About IBD: Recent Episodes

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Episode transcript and more information at: https://bit.ly/AIBD207 Alicia Aiello, president of Girls With Guts, shares her journey with IBD, which began in childhood. She discusses major surgeries, including a proctectomy that resulted in an unexpected loss of her fallopian tubes and an ovary, and the early onset of perimenopause. Alicia opens up about navigating rectovaginal fistulas, feeling dismissed, and the importance of knowing when to switch providers.

What you'll learn:

• The impact of inflammatory bowel disease (IBD) on women's health.
• Why proctectomy surgery might be used, how it affects women, and some potential complications.
• The challenges of rectovaginal fistulas and their effects on intimacy and mental health.
• The importance of self-advocacy and seeking second opinions.
• Some of the gaps in healthcare for women with IBD, especially regarding reproductive health and menopause.
• The role of community support and organizations such as Girls With Guts.
• How multidisciplinary approaches are important in managing women's health issues.
• Some personal coping strategies and hobbies outside of IBD advocacy.
• Upcoming events and resources for women living with IBD.

Key Chapters & Timestamps:

• [01:12]: Introduction to Alicia Aiello, president of Girls With Guts (GWG).
• [03:01]: Alicia describes her abrupt diagnosis with ulcerative colitis at age 14.
• [04:36]: Alicia explains a proctectomy and details her surgical history, including rectovaginal fistulas.
• [07:26]: Alicia discusses her decision to seek a permanent ostomy.
• [09:19]: Alicia shares the unexpected outcome of her proctectomy surgery.
• [13:43]: Alicia talks about the lack of mental health support and reproductive care.
• [22:40]: Alicia shares the physical and mental toll of fistulas.
• [25:34]: Alicia offers advice on trusting your gut and advocating for yourself when you feel invalidated or rushed by a provider.
• [35:42]: Alicia outlines how providers can improve care for their patients.
• [38:24]: Gaps in care, including isolation and lack of information on aging with IBD.
• [40:49]: Alicia details the upcoming GWG annual retreat and highlights the Cedars-Sinai Women's Health Conference.
• [45:54]: Alicia shares about her hobbies outside of advocacy.

Resources:

• What is a Fistula? — Amber Tresca via Verywell Health: https://www.verywellhealth.com/what-is-a-fistula-1941776
• Girls With Guts retreat information and registration — https://girlswithguts.org/calendar/gwg2026/
• IBD & Women's Health Conference — https://www.eventbrite.com/e/your-life-your-hormones-your-ibd-womens-health-at-every-stage-tickets-1977517412815

Find Alicia Aiello at:

• Instagram: @alicia_aiello
• Facebook: @AliciaMarieAiello

Find Girls With Guts at:

• Instagram: @ibdgirls
• Facebook: https://www.facebook.com/IBDgirls
• TikTok: @ibdgirls
• LinkedIn: @ibdgirls
• Web: www.girlswithguts.org
• YouTube: @IBDgirls

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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The truth about inflammatory bowel disease (IBD) is that it goes beyond the gut. In this first ever live recording of About IBD, Amber talks with Dr. Puja Khanna from Cedars-Sinai to explore the extra-intestinal impacts of IBD, from skin conditions and eye inflammation to debilitating fatigue. Learn how sex-specific factors affect women and why building a multi-disciplinary care team is the best strategy for long-term health.

Episode transcript and more information at: https://bit.ly/AIBD206

Chapters:

• (00:01): Amber introduces the first-ever live recording of the "About IBD" podcast, recorded at an event in Los Angeles.
• (01:31): Amber and guest expert Dr. Puja Khanna are introduced, detailing their backgrounds and expertise in the IBD space.
• (03:26): Dr. Khanna discusses common extra-intestinal manifestations of IBD, including issues with the eyes, liver, skin, and joints.
• (05:45): A discussion on how women are uniquely affected by IBD, including hormonal influences during puberty, pregnancy, and menopause.
• (06:30): Dr. Khanna explains the importance of a multidisciplinary care team and open communication with your gastroenterologist about all symptoms.
• (08:00): The importance of discussing reproductive health early, even in adolescence, to gather information and make informed decisions later.
• (10:18): Dr. Khanna offers advice on managing fatigue by addressing sleep, mood, nutrition, and energy conservation, even when labs are normal.
• (14:23): Amber and Dr. Khanna discuss the fine line between pushing through illness and recognizing one's capacity to avoid overexertion.
• (15:47): Dr. Khanna advises focusing on trends rather than daily details to avoid anxiety while still providing useful data to doctors.
• (20:04): Guidance on when to send a portal message versus seeking immediate care, emphasizing that patients should not hesitate to reach out.
• (22:41): How patients can understand that issues like joint pain or eye problems can be connected to their IBD.
• (26:01): Dr. Khanna explains the detective work involved in distinguishing between medication side effects and extra-intestinal manifestations of IBD.
• (30:00): Dr. Khanna discusses a multidisciplinary treatment approach that incorporates nutrition, mental health, and physical therapy alongside medication.
• (32:27): A discussion on the long-term safety of modern IBD medications and the genetic risk of passing Crohn's to children.
• (35:34): Dr. Khanna explains the role of diet, the microbiome, and specialized nutrition in managing IBD for human patients.
• (38:31): Dr. Khanna shares personal details about her family, her life in Southern California, and her experience as a triathlete.

Concepts discussed:

• Women Experience IBD Differently Than Men: Why It Matters
• Inflammatory bowel disease's gender bias
• 5 ways inflammatory bowel disease affects women differently

Find Dr Puja Khanna at:

• Twitter: @PujaKhannaMD
• Bluesky: @pujakhannamd.bsky.social
• LinkedIn: Puja Khanna, MD
• Instagram: @pujakhannamd
• Cedars Sinai: Dr Khanna

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Emergency room visits are a source of stress and can lead to fragmented care. Amber speaks with psychologist Dr Stephen Lupe to learn why inflammatory bowel disease (IBD) patients avoid the ER, the reality of medical trauma, and how a multi-disciplinary approach like the IBD Medical Home can revolutionize patient care. Transcript and more information at: https://bit.ly/AIBD205 Sponsored by: Johnson & Johnson: http://tremfyaradio.com/ Find Stephen Lupe, PsyD at: * Cleveland Clinic: https://providers.clevelandclinic.org/provider/stephen-lupe/4826753 * Twitter: @Psylupe * LinkedIn: @stephen-lupe Resources mentioned: * Cleveland Clinic's Digestive Disease & Surgery Institute: Explore the multidisciplinary healthcare programs where integrated care models such as the IBD Medical Home are being used and expanded. https://clevelandcliniclondon.uk/clinical-institutes/digestive-disease-surgery/inflammatory-bowel-disease

• Posttraumatic Stress in Patients With Inflammatory Bowel Disease: Read the full foundational study on IBD-related medical trauma co-authored by Dr. Tiffany Taft in the journal Inflammatory Bowel Diseases, which highlights the psychological impacts and the 90% prevalence statistic discussed by Dr. Lupe. https://pubmed.ncbi.nlm.nih.gov/34137449
• The Crohn's & Colitis Foundation: Access educational materials and find vetted local peer support groups. https://www.crohnscolitisfoundation.org/myibdlearning
• Digital Health: Discover the digital collaborative care platform mentioned by Dr. Lupe that uses clinical care teams, evidence-based dietary interventions, and behavioral therapies to support chronic GI health. https://pmc.ncbi.nlm.nih.gov/articles/PMC12534582

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

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Amber Tresca talks with Andrew Giffin, a product manager in Toronto who was diagnosed with Crohn's disease at 19 after years of symptoms in high school. Andrew shares his experience navigating three major surgeries, adjusting his career path away from law enforcement, and learning to manage stress as part of living with a chronic illness. He also discusses developing apps, including Brown Note, a free, anonymous peer-support app for people with digestive diseases. Brown Note was inspired by his own feelings of isolation while preparing for his third surgery and is available on Apple, Android, and the web.

Transcript and more at: https://bit.ly/AIBD204

What you'll learn:

• Personal journey with Crohn's disease, including challenges in high school and college and the impact surgery has on personal and professional life.
• What goes into developing apps to support individuals with digestive diseases.
• What goes into creating a bathroom finder app such as "Flusher."
• Explanation of Brown Note, an anonymous peer support app for people with IBD.
• Importance of community and support for those with chronic illnesses.
• Coping strategies for managing stress and emotional challenges related to illness, such as reading and music.

Key Chapters & Timestamps:

• [00:00:05] — Introduction to Andrew Giffin
• [00:01:49] — Early Symptoms and Diagnosis Journey
• [00:03:53] — The Challenge of University Life
• [00:07:09] — First Surgery and Recovery
• [00:09:30] — A Ruptured Appendix Emergency
• [00:12:28] — Changing Career Aspirations
• [00:15:53] — Coping with Life Changes
• [00:18:32] — Developing the "Flusher" App
• [00:21:14] — Lessons Learned from "Flusher"
• [00:24:54] — The Creation of "Brown Note"
• [00:27:50] — The Goal of the "Brown Note" App
• [00:30:12] — Andrew's Current Reading Obsession
• [00:33:59] — How to Find "Brown Note"

Find Andrew Giffen at:

• LinkedIn: https://www.linkedin.com/in/giffen/

Find Brown Note at:

• Web: https://www.brownnote.app/
• Apple Store: https://apps.apple.com/app/id6759183219
• Google Play: https://play.google.com/store/apps/details?id=com.brownnote.app

Resources discussed on this episode: * Melsheimer R, Geldhof A, Apaolaza I, Schaible T. Remicade® (infliximab): 20 years of contributions to science and medicine. Biologics. 2019;13:139-178. doi:10.2147/BTT.S207246 https://pmc.ncbi.nlm.nih.gov/articles/PMC6679695/ * Anal Fissure vs. Fistula: What Are the Differences * First Signs of Appendicitis and Symptoms You Shouldn't Ignore * IBD in College or Grad School: Coping With Stress, Flares, and Feeling Left Behind * Got2Go — New York City Bathroom Finder * We Can't Wait: Restroom Finder App — Crohn's and Colitis Foundation * GoHere® Washroom Access — Crohn's and Colitis Canada

Pop culture references:

• The Smiths: https://www.amazon.com/s?k=the+smiths&rh=p_lbr_music_artists_browse-bin%3AThe%2BSmiths
• The Wheel Of Time Series: https://www.amazon.com/Wheel-Time-Book-Set-Crossroads/dp/B00132BG7U/
• Frank Herbert's Dune Saga: https://www.amazon.com/Frank-Herberts-Dune-6-Book-Boxed/dp/0593201884/

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

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Certified travel advisor, business owner, and ulcerative colitis patient Sarah McGovern joins Amber to give tips and tricks on traveling with IBD. Sarah relates her IBD journey, including a rare medication side effect that landed her in the hospital. Now in remission, Sarah breaks down her blueprint for traveling with an invisible illness. On this episode, you'll learn concrete, practical strategies for traveling with IBD and how a travel advisor can help you relax on your next trip. Transcript and more information at: https://bit.ly/AIBD203 Chapters: * 00:04 — Introduction to Sarah McGovern * 02:16 — Sarah's Ulcerative Colitis Journey * 04:18 — Medication-Induced Pancreatitis * 09:03 — Planning Travel with IBD * 14:23 — Packing Tips for IBD Travelers * 20:39 — Managing Food Restrictions While Traveling * 25:38 — The Value of a Travel Advisor * 33:00 — Traveling to Disney with IBD * 37:03 — Disney's Disability Access Service * 43:46 — Travel Hacks * 48:16 — Essential Travel Programs * 55:07 — Where to Find Sarah Online

Resources:

• IBD Specific Travel Information: https://www.ibdpassport.com
• Delta SkyMiles® Gold American Express Card: https://americanexpress.com/en-us/referral/delta-skymiles-gold-american-express-card?ref=AMBERTxPsU&xl=cp01
• Foldie Bag: https://amzn.to/4uUkk85
• Packing Cubes: https://amzn.to/4euki0U

Find Sarah McGovern at:

• Instagram: @halcyontravelco
• Facebook:@halcyontravelco
• LinkedIn: @halcyontravelco
• Website: https://halcyontravel.co
• Sarah's Personal Instagram: @sarahmcgovern99

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Episode transcript and more information at: https://bit.ly/AIBD202

Katie Neu and Amber Tresca talk over the results of the IBD Social Circle white paper, "The Power of Community in Inflammatory Bowel Disease." A survey of more than 500 patients puts a spotlight on the ways IBD affects body image, relationships, intimacy, and mental health. Amber and Katie discuss masking symptoms, the difficulties of working a corporate job, and why having community is critical. Chapters * 00:05 — Host Amber Tresca introduces the podcast and her guest, Katie Neu, who lives with Crohn's disease. * 01:25 — Amber and Katie discuss the IBD Social Circle, a community for patients, caregivers, and healthcare professionals. * 04:25 — The conversation turns to the experience of "faking being well" to manage social and professional expectations with an invisible illness. * 10:17 — Katie shares her experiences with the stigma surrounding IBD, from high school and college to the workplace. * 13:59 — The discussion focuses on the significant barriers to maintaining a career while living with IBD, including needing accommodations. * 23:20 — Amber and Katie discuss the impact of IBD on body image, dating, and intimate relationships. * 31:26 — The hosts talk about why people hesitate to join support groups and the mental health benefits of finding community. * 37:08 — Katie shares where listeners can find her online, including her Instagram and Substack, to connect and learn more.

The IBD Social Circle White Paper: The power of community in inflammatory bowel disease

Find Katie Neu of Badass With a Bad Ass at:

• Instagram: @badass.w.a.bad.ass
• LinkedIn: @badasswithabadass

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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After a devastating Crohn's disease flare, marketing executive Bari Gratton traded a high-stress career for the healing path of yoga therapy in California. Bari joins Amber Tresca to discuss the "Five Layers of Being," the toxicity of "pushing through," and how she is building community for the next generation of IBD patients.

Episode transcript and more information at: https://bit.ly/AIBD201

Key Chapters & Timestamps:

• [00:00:00] – Welcome to About IBD with Amber Tresca
• [00:04:40] – Diagnosis in the late 90s: Life as a teen with Crohn's
• [00:12:35] – The 2017 Crisis: Three surgeries and a temporary ostomy
• [00:19:40] – The Barn Door Moment: Finding safety in a yoga studio
• [00:23:00] – Healing the Next Generation: Camp Oasis and teen advocacy
• [00:30:30] – Intro to the Pancha Maya Kosha (The 5 Layers of Being)
• [00:32:15] – Layer 1: Annamaya Kosha (The Physical Body)
• [00:34:10] – Layer 2: Pranamaya Kosha (The Energy/Breath Body)
• [00:36:45] – Layer 3: Manomaya Kosha (The Mental/Emotional Body)
• [00:39:50] – Layer 4: Vijnanamaya Kosha (The Wisdom/Witness Body)
• [00:42:30] – Layer 5: Anandamaya Kosha (The Bliss/True Nature Body)
• [00:52:00] – Why "Pushing Through" is a toxic practice for chronic illness
• [01:03:00] – Girls with Guts and the "Om My Guts" community

What you'll learn:

• Why the "pushing through" mentality can exacerbate IBD and how to shift toward acceptance.
• Bari's journey from a high-stress NYC marketing career to becoming a yoga instructor.
• The profound impact of the Pancha Maya Kosha (Five Layers of Being) on managing chronic pain and anxiety.
• How a devastating flare led Bari to overhaul her life and work towards remission.
• The unique benefits of clinical yoga therapy for those with IBD.
• The importance of community through organizations like Girls with Guts and the Crohn's & Colitis Foundation.

Resources mentioned in this episode:

• Team Om My Guts
• Bari Gratton Take Steps
• Greater Los Angeles/Orange County Chapter of the Crohn's and Colitis Foundation

Find Girls With Guts at:

• Facebook: @IBDgirls
• Web: https://girlswithguts.org/
• LinkedIn: @ibdgirls
• Instagram: @ibdgirls
• Annual Retreat: October 23 - October 26

Find the Crohn's & Colitis Foundation Los Angeles/Orange County Chapter at:

• Web: Greater Los Angeles/Orange County Chapter of the Crohn's and Colitis Foundation
• Instagram: @crohnscolitisfoundationla_oc
• Facebook: @ccflaoc

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Did you know that inflammatory bowel disease (IBD) isn't only a digestive condition? It can also attack your vision. Your host, Amber J Tresca, breaks down some of the most common eye-related extra-intestinal manifestations (EIMs) of Crohn's disease and ulcerative colitis. Learn how to identify the warning signs of episcleritis, uveitis, and scleritis, and find out when you need to see an ophthalmologist right away to protect your eyesight.

Episode transcript and more information at: https://bit.ly/AIBD200

Key Chapters & Timestamps * 00:00 - Introduction: Protecting your vision with IBD * 02:07 - What are Extra-Intestinal Manifestations (EIMs)? * 04:21 - How common is eye disease in IBD patients? * 05:43 - Condition 1: Episcleritis (Symptoms and treatments) * 07:15 - Why episcleritis often tracks with IBD flares * 10:14 - Condition 2: Uveitis (Red flags and risks of vision loss) * 13:58 - Condition 3: Scleritis (Rare but severe complications) * 16:51 - Condition 4: Dry Eyes * 18:23 - Risk Factors: Who is most likely to develop IBD eye issues? * 20:10 - When to call your doctor and why you need an ophthalmologist * 23:25 - Practical tips: Keeping eye drops in the fridge

Sources: * Vavricka SR, Schoepfer A, Scharl M, Lakatos PL, Navarini A, Rogler G. Extraintestinal Manifestations of Inflammatory Bowel Disease. Inflamm Bowel Dis. 2015;21(8):1982-1992. doi:10.1097/MIB.0000000000000392 * Mintz R, Feller ER, Bahr RL, Shah SA. Ocular manifestations of inflammatory bowel disease. Inflamm Bowel Dis. 2004;10(2):135-139. doi:10.1097/00054725-200403000-00012 * Crohn's & Colitis Foundation. Eye complications in IBD. * Rosenbaum JT, Bodaghi B, Couto C, et al. New observations and emerging ideas in diagnosis and management of non-infectious uveitis: A review. Semin Arthritis Rheum. 2019;49(3):438-445. doi:10.1016/j.semarthrit.2019.06.004 * World Health Organization. Vitamin A deficiency and ocular health. * Rufo PA, Denson LA, Sylvester FA, et al. Health supervision in the management of children and adolescents with IBD: NASPGHAN recommendations. J Pediatr Gastroenterol Nutr. 2012;55(1):93-108. doi:10.1097/MPG.0b013e31825959b8

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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T.L. Wright, known as The IBD Athlete and author of The SCD Athlete Cookbook, tells Amber about her frustrating decades-long journey to a Crohn's disease diagnosis. She explains the health reasons behind her pivot from triathlons and Ironman races to competitive bodybuilding. You'll leave this episode with a better understanding of how to fuel for your sport or workout while managing an immune-mediated condition.

Episode transcript and more information at: https://bit.ly/AIBD199

The SCD Athlete Cookbook: Amazon and Bookshop.org

Chapters: * 00:00 - Introduction to the IBD Athlete * 02:39 - A Lifetime of Unexplained Symptoms * 04:18 - The "Go Hard" Endurance Sports Trap * 08:09 - The Overlooked Connection Between IBD and Oral Health * 11:04 - The 3-Year Promise * 14:26 - Can IBD Patients Compete at an Elite Level? * 21:21 - The Pivot to Natural Bodybuilding * 26:54 - 5 Tips for Consistency on the SCD Diet * 33:04 - The Dangers of AI Recipe Generation * 35:29 - The Accidental Influencer * 40:44 - Where to Find the IBD Athlete

What You'll Learn: * How upper GI Crohn's disease can be missed or misdiagnosed. * Why the "tough it out" culture in endurance sports can be dangerous for athletes with chronic illnesses. * How to transition athletic goals to better support a healing body. * Practical tips for managing the Specific Carbohydrate Diet (SCD) as an active person. * The importance of advocating for your health and understanding the connection between diet and IBD.

More resources:

• Breaking the Vicious Cycle: Intestinal Health Through Diet
• Specific Carbohydrate Diet Association
• Special IBD diets via The Crohn's and Colitis Foundation

Find T.L. Wright at:

• Web: The IBD Athlete
• Facebook: The IBD Athlete
• Threads: @theibdathlete
• Instagram: @theibdathlete
• Tik Tok: @TheIBDAthlete

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Episode transcript and more information at: https://bit.ly/AIBD198

What does a pregnant woman do when they need a biologic medication, but pregnancy isn't included in drug trials? Dr. Sonia Grandi and Dr. Christina Longo talk to Amber Tresca about the BIONIC study, a groundbreaking project using decades of real-world data to understand how biologics affect a pregnant woman and her baby. The BIONIC study is designed to empower patients to make confident, evidence-based decisions about their own health and their children's future.

Timestamps * 00:00 – Introduction to Dr. Sonia Grandi and Dr. Christina Longo. * 04:14 – What exactly is an Epidemiologist? * 06:33 – Why childhood asthma research led to the BIONIC Study. * 11:05 – Why children and pregnant women are historically excluded from trials. * 13:00 – Defining "Remission" in children: Why it's more than just labs. * 17:01 – The BIONIC Study explained: Safety and biologics in pregnancy. * 22:04 – The Patient Advisory Committee: Why lived experience matters. * 25:52 – The "Grind" of Research Funding: How projects actually get built. * 32:21 – Fun & Hobbies: Puzzles, running, and the "BIONIC" spirit.

Find Sonia Grandi, MSc, PhD at:

• The Hospital for Sick Children (SickKids): Sonia Grandi, MSc, PhD
• Dalla Lana School of Public Health: Sonia Grandi, MSc, PhD
• Lab: IMPOWER Lab at The Hospital for Sick Children (SickKids)
• LinkedIn: @sonia-grandi

Find Cristina Longo , PhD at:

• Université de Montréal: Cristina Longo , PhD
• CHU Sainte-Justine: Cristina Longo , PhD
• LinkedIn: @cristina-longo-67656040

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Everyone needs sleep, but so many of us struggle to get enough. People living with IBD know that a good night's sleep can feel like a distant dream, whether it's pain, urgent bathroom trips, or racing thoughts keeping you up. But why exactly does IBD disrupt our sleep even during remission? And what is your sleep telling you about the risks of a flare-up?

Episode transcript and more information at: https://bit.ly/AIBD197

Chapters: 00:04 Introduction and Host Background 01:32 IBD and Sleep: The Problem 03:00 Why Sleep Matters for IBD 04:14 Defining Sleep Disturbance in IBD 05:23 Inflammation's Role in Sleep Disruption 07:08 Wearables and Sleep Research in IBD 08:29 Mental Health, Pain, and Medication Effects 11:06 Why Prioritizing Sleep is Crucial 12:30 Practical Tips for Better Sleep 14:57 Communicating Sleep Issues and Seeking Support 16:12 Episode Wrap-Up and Resources 16:20 Credits and Outro More Information on Sleep:

• Alien: How IBD Inspired an Iconic Movie:
• 10 Tips to Get More Sleep
• Talking to Your Doctor About Sleep
• I Am So Tired
• Have You Tried Yoga? – An IBD Community Poll
• A Meditation Journey – Week 1
• Struggling to Sleep? These 11 Foods Could Help You Rest Better
• 13 Foods to Eat Instead of Taking Melatonin for Better Sleep
• The Best Time to Eat Dinner for Better Digestion and Sleep

Sources:

• Su XY, Wang YN, Huang YH, Dai C. The sleep quality and its association with disease activity in patients with inflammatory bowel disease: a meta-analysis. Rev Esp Enferm Dig. doi:10.17235/reed.2025.11305/2025.
• Zhang JZ, Song XZ, Song XN, Shen YL, Tang H, Li H. Prevalence and risk factors of sleep disorders in inflammatory bowel disease: a cross-sectional study. Int J Colorectal Dis. 2024;39(1):140. doi:10.1007/s00384-024-04712-w.
• Chaemsupaphan T, Pimolsri C, Subdee N, et al. Poor sleep quality is common and independently associated with disease activity and poor quality of life in inflammatory bowel disease: a long-term follow-up study. Therap Adv Gastroenterol. 2025;18:17562848241311142. doi:10.1177/17562848241311142.
• Kuzoian S, Jerson B, Brimacombe M, Schneeberg L, Hyams JS. Sleep tracking and sleep hygiene counseling improve fatigue in pediatric patients with inflammatory bowel disease. J Pediatr Gastroenterol Nutr. 2025;81(1):62-68. doi:10.1002/jpn3.70066.
• Xu TY, Zhang Y, Zhao SL. Association of Poor Sleep Quality With Adverse Outcomes in Patients With Inflammatory Bowel Disease: A Systematic Review and Meta-Analysis. J Dig Dis. 2024;25(11-12):664-673. doi:10.1111/1751-2980.13328.

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Artificial intelligence (AI) is being utilized in healthcare for many purposes. Patients are wondering how they can safely and effectively use AI tools to educate themselves and to manage their health. Amber and guest Michael Tresca discuss what AI is, how it works, and why skepticism and source verification are essential. They highlight practical, lower-risk ways patients might use AI, such as organizing personal health data, drafting appointment questions, and explaining medical terms. The emphasis is on ongoing education, privacy concerns, responsible use, and the importance of "trust but verify" when using AI for critical health decisions without professional input.

Episode transcript and more information at: https://bit.ly/AIBD196

Sign up for Mike's AI newsletter: AI Unplugged on LinkedIn

Timestamps:

• 00:05 — Introduction and Guest Welcome
• 01:20 — Recap of Previous Episode and Relationship Disclosure
• 02:16 — Defining AI and Common Misconceptions
• 04:14 — AI in Clinical and Patient Use
• 05:11 — AI in Everyday Search and Unintentional Use
• 06:39 — AI Hallucinations: What They Are and Why They Happen
• 10:13 — Importance of AI Showing Its Work and Sources
• 10:58 — Challenges in Understanding AI's Reasoning
• 14:33 — AI Training Data and Source Reliability
• 15:31 — Risks of Outdated or Inaccurate Health Information
• 21:35 — AI's Responsibility in Providing Answers
• 23:13 — Tolerance for Error and Regulation in AI
• 24:02 — Transition to Patient Use Cases
• 24:19 — Using AI to Organize Medical Information
• 26:23 — Drafting Questions for Appointments with AI
• 27:19 — Tracking Symptoms or Diet with AI
• 28:22 — AI for Coping with Brain Fog or Fatigue
• 31:10 — Listener Feedback: Avoiding AI
• 32:31 — Listener Feedback: Privacy, Data Breaches, and Environmental Concerns
• 34:45 — Listener Feedback: Worry About Errors
• 36:29 — Listener Feedback: Using AI for Definitions and Basic Research
• 37:24 — Listener Feedback: Using AI to Explain Test Results
• 40:31 — Listener Feedback: Healthcare Providers Using AI for Notetaking
• 43:30 — Ethics of Recording Medical Visits
• 44:42 — Conclusion and Final Thoughts
• 46:25 — Outro and Credits

Find Michael Tresca at World of Welstar: * Twitter: @WorldofWelstar * Instagram: @world_of_welstar * Facebook: @worldofwelstar * MeWe: http://tinyurl.com/MeWeTRPG * Threads: http://tinyurl.com/threadsWOW * Bluesky: https://blskyl.ink/worldofwelstar * Amazon: http://amzn.to/41jMn5h * EN World: http://tinyurl.com/ENWRPG * Drive Through RPG: http://tinyurl.com/DTRPGMNT * Patreon: https://www.patreon.com/talien

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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The bedroom can be a place of anxiety for people of all genders living with inflammatory bowel disease (IBD). How can you boost your confidence and deepen your connection with your partner while living with IBD? Dr. Stacy Friedman is a clinical sexologist and intimacy coach living with ulcerative colitis. She explains how IBD affects intimacy, body image, dating, and relationships. Dr. Stacy shares her personal experiences and professional advice, with a focus on communication, trust, and how to know if a partner will be supportive. In this episode, we talk about why intimacy is more than sex and give tips about how to manage challenges. Dr. Stacy also encourages listeners to seek out support and embrace connection in the ways that work for them. Transcript and more at: https://bit.ly/AIBD195 Get Dr Stacy's book "Confessions & Lessons of a Sexpert: The Ultimate Guide to Intimacy and Better Sex" Timestamps 00:00 — Introduction and Episode Overview 03:10 — Dr. Stacy's IBD Journey 05:30 — Sex and Intimacy Coaching Explained 07:44 — Body Image and IBD 09:59 — Fear, Embarrassment, and Communication 12:26 — Intimacy Beyond Sex 14:32 — Communication and Relationship Dynamics 17:18 — Trust and Emotional Safety in Relationships 17:49 — Embracing Unpredictability 20:38 — Disclosing IBD or Ostomy to Partners 22:53 — Personal Stories of Disclosure 25:12 — Sex Coach vs. Sex Therapist 27:09 — Who Benefits from Sex Coaching 28:51 — Getting Started with Sex Coaching 30:43 — Changing Mindsets About Intimacy 31:32 — What to Expect from Coaching Sessions 33:37 — Resources and The Purple Passion Project 35:13 — Pelvic Floor Therapy and Additional Support 36:54 — Closing Remarks and Appreciation 38:01 — Outro and Credits Key Topics * Impact of inflammatory bowel disease (IBD) on intimacy and relationships * Personal experiences of living with ulcerative colitis * Effects of IBD on mental health and body image * Communication and trust in relationships for individuals with IBD * Navigating dating and intimacy challenges related to IBD * Importance of open discussions about medical conditions with partners * Strategies for building supportive and understanding relationships * Redefining intimacy beyond sexual intercourse * Role of sex coaching versus sex therapy in addressing intimacy issues * Resources and support available for individuals seeking to improve intimacy and relationships while managing IBD

Find Dr Stacy Friedman on: * Web: DrStacyFriedman.com * Apple Podcasts: Purple Passion Project * Spotify: Purple Passion Project * YouTube: @DrStacyFriedman * TikTok: @drstacyfriedman * Facebook: @drstacyfriedman * Instagram: @drstacyfriedman * LinkedIn: @drstacyfriedman

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Artificial intelligence (AI) is here to stay. How can we approach AI with both curiosity and caution, especially as it becomes more integrated into daily life? If we're not aware of it and looking for it, AI could become inserted into spaces where we aren't comfortable with it. Amber talks with her son Brenden, a computer science student, about recognizing AI-generated content, the importance of media literacy, and the ethical challenges technology brings. This conversation offers some practical uses for AI, such as learning new skills or automating mundane tasks, while pointing out that creativity and critical thinking are human pursuits. We stress how AI isn't a replacement for expertise and that we should all question what we see online to encourage the responsible use of AI tools.

Episode transcript and more information at: https://bit.ly/AIBD194

Find Brenden Tresca at:

• LinkedIn: Brenden Tresca
• WHNU 88.7: Tech Fest radio show

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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We explore the idea of setting intentions instead of resolutions in the new year, which are more adaptable for people living with IBD. Amber shares clips from guests who explain their intentions, such as prosper, discipline, generosity, consistency, and the importance of taking breaks. Each guest highlights how intentions guide actions and mindset, emphasizing personal growth, resilience, and kindness, despite unpredictability.

Episode transcript and more information at: https://bit.ly/AIBD193

Chapters: 00:05 — Introduction to Intentions Clip Show 01:14 — Why Intentions Over Resolutions 02:31 — Lisa: Prosper and Uplift 04:48 — Rachel: Discipline, Accountability, Generosity 06:46 — Stacey: Grounded Goals and Consistency 10:57 — Jen Hubley: Give Yourself a Break 12:06 — Episode Wrap-Up and Call to Action Find Lisa Zawrotny of Positively Productive Systems at:

• Web: Positively Productive
• LinkedIn: Positively Productive Systems
• Facebook: Positively Productive
• Twitter: Positively Lisa
• Instagram: Positively Lisa
• YouTube: Positively Lisa
• TikTok: Positively Living
• Pinterest: Positively Productive

Find Rachel Bee of Infusion Hero at:

• Web: InfusionHero.com
• LinkedIn: Rachel Bee
• Facebook: @infusionhero
• Instagram: @infusion_hero
• TikTok: @infusion.hero

Find Stacey Collins, MA, RDN/LDN at:

• Web: Stacey Collins Nutrition
• Twitter: @staceynellc_rd
• Instagram: @staceynellc_rd
• LinkedIn: @stacey-cutler-collins

Find Jen Hubley Luckwaldt and The Job Hopper at:

• Web: The Job Hopper
• Bluesky: @jenlucky.bsky.social
• Substack: Old Mom Things
• LinkedIn: @jen-hubley-luckwaldt

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Looking for your next great read? Host of About IBD, Amber Tresca, gives her year-end roundup of books, with brief summaries and her reflections on each. The selections cover a mix of genres, from speculative fiction and psychological thrillers to memoir and dark fantasy, often touching on themes of trauma, community, self-acceptance, and chronic illness. Amber shares how the stories resonated with her experience as a GenX mom living with a chronic illness, offering both recommendations and caveats. She also discusses practical tips for accessing books affordably through libraries and apps, and encourages exploring local bookstores or thrift shops to boost your reading journey and sense of community.

Episode transcript and more information at: https://bit.ly/AIBD192

Find Amber's 2025 books at Bookshop.org

Chapters:

• 00:05 — Introduction and Episode Overview — Amber introduces herself, the podcast, and the year-end book review episode.
• 01:08 — Book 1: Beautyland by Marie Helene Bertino — Summary, themes, and reflections on the coming-of-age story of an alien observing human life.
• 03:35 Book 2: The Book of Two Ways by Jodi Picoult — Summary, dual timelines, ancient Egypt, and personal frustrations with the main character.
• 06:10 — Book 3: Doctor Sleep by Stephen King — Summary, differences between book and movie, trauma, and post-Shining life for Danny Torrance.
• 09:57 — Book 4: We Used to Live Here by Marcus Kliewer — Summary, psychological horror, reality distortion, and the challenges of ambiguous endings.
• 12:23 — Book 5: The Midnight Library by Matt Haig — Summary, alternate lives, regret, self-acceptance, and critique of the book's premise.
• 16:07 — Library Resources and Digital Media Tips — Amber shares how she accesses books via library apps and encourages listeners to use library resources.
• 17:36 — Book 6: A Sorceress Comes to Call by T. Kingfisher — Summary, dark fantasy, abuse, coming of age, and resilience in a retelling of Goose Girl.
• 20:40 — Book 7: Death Valley by Melissa Broder — Summary, magical realism, chronic illness depiction, and reflections on escapism and coping.
• 24:21 — Book 8: One of Us Knows by Alyssa Cole — Summary, dissociative identity disorder, pandemic context, and a unique take on the locked-room thriller.
• 27:07— Book 9: A Man Called Ove by Fredrik Backman — Summary, community, connection, and critique of the book's tone and humor.
• 31:06 — Book 10: A Very Punchable Face by Colin Jost — Summary, comedic memoir, personal anecdotes, and recommendation of the audiobook version.
• 33:44 — Book Shopping, Thrifting, and Community Reflections — Amber discusses supporting bookstores, thrifting, and the importance of reading for community and personal growth.
• 36:07 — Closing Remarks and Call to Action — Amber wraps up, encourages listener engagement, and provides information about show notes and future book clubs.

Books Amber Contributed to in 2025:

• Living with Fire: A Patient's Guide to Thriving with Autoimmune and Inflammatory Diseases
• Wellness Through Words: A Multivocal Anthology on Healthcare, Patient Safety, and Wellness

Library apps mentioned in this episode:

• Libby
• Hoopla
• Freegal Music

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @AboutIBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Episode transcript and more information at: https://bit.ly/AIBD191

Kinsey Beagley, a pediatric medical assistant diagnosed with ulcerative colitis at 15, shares about her experiences with IBD, including struggling with symptoms, multiple medication failures, and eventually having J-pouch surgery. Kinsey shares how reframing difficult experiences and adopting a positive mindset—her mantra is "I can do hard things"—has helped her cope.

Chapters

• 00:04 Introduction and Guest Introduction
• 02:05 Kinsey's Diagnosis Story
• 04:42 Initial Treatments and Medication Journey
• 06:06 Decision for Surgery
• 07:09 Emotional Impact of Taking a Gap Year
• 09:05 How and When Surgery Was Discussed
• 10:12 Life After J-Pouch Surgery
• 12:30 Reframing Difficult Experiences
• 14:04 Advice on Positive Mindset
• 15:35 Inspiration for a Healthcare Career
• 17:38 Applying Patient Experience to Her Work
• 18:52 Hiking and Bathroom Anxiety
• 21:19 Managing Hydration and Pouch Function
• 22:29 Coping with Bathroom Anxiety in Daily Life
• 26:24 Practicing Pouch Control and Mental Adjustment
• 27:26 Where to Find Kinsey Online
• 28:07 Closing Remarks and Outro

Some of the topics discussed include:

• Personal journey of living with ulcerative colitis from diagnosis to treatment.
• Decision-making process regarding surgical options and the emotional impact of surgery.
• Experiences and challenges of living with a J-pouch post-surgery.
• Importance of maintaining a positive mindset and reframing difficult experiences.
• Strategies for managing anxiety in social situations and daily activities.
• Tips for outdoor activities and managing bathroom access while hiking.
• The significance of community support and patient-centered care in chronic illness management.

Find Kinsey Beagley at:

• TikTok: @unifyinguc
• Instagram: @unifyinguc

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Katryna Loewen, a registered nurse diagnosed with ulcerative colitis in 2020, shares her journey through severe flare-ups, incontinence, and her decision to have a colectomy and ileostomy in 2024. She discusses the emotional and physical challenges of living with IBD, the stigma of ostomies, and how these experiences shaped her life, relationships, and career. Katryna also describes managing her mental health, planning her wedding, and preparing for motherhood, offering hope and practical advice to others with IBD.

Episode transcript and more information at: https://bit.ly/AIBD190

Chapters:

• 00:04 Introduction and Guest Background
• 02:09 Katrina's Nursing Career
• 03:08 Ulcerative Colitis Diagnosis
• 04:48 Remission and Flare-Ups
• 05:09 Severe Flare in 2023
• 07:08 Decision for Surgery
• 10:36 Facing Ostomy Surgery
• 14:08 Acceptance and Life with an Ostomy
• 16:08 Impact of IBD on Mental Health
• 17:18 Incontinence Experiences
• 23:31 Tracking Symptoms and Advocacy
• 26:23 Wedding with IBD
• 28:45 Therapy and Emotional Recovery
• 32:06 Pregnancy After Ostomy Surgery
• 37:50 Preparing Pets for Baby
• 41:54 Support Networks and Advice
• 43:32 Where to Find Katrina
• 43:38 Closing Remarks

Find Katryna Loewen at:

• Instagram: @goingpains88

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Samantha Sauer, BCPA, president of Gastroparesis Patient Association for Cures and Treatments (G-PACT), uncovers the challenges of living with gastroparesis and how it can overlap with IBD or other conditions. Sam shares her personal journey with gastroparesis and gives insights on symptoms, diagnosis, misconceptions, and the daily impact on patients' lives. Topics include the difficulties in getting the right diagnosis, the emotional toll of dietary restriction, and the importance of support communities. Sam also highlights resources offered by G-PACT, including support groups and educational outreach, while encouraging self-advocacy and perseverance for those seeking answers or support for their condition.

Timestamps on this episode:

• 0:04 – Introduction and Guest Background
• 1:25 – Samantha's Diagnosis Journey
• 4:17 – What is Gastroparesis? Symptoms and Diagnosis
• 7:19 – Misdiagnosis and Overlapping Conditions
• 10:50 – Inflammation and Gastroparesis
• 12:18 – Impact on Daily and Social Life
• 16:22 – Social Challenges and Stigma
• 18:47 – Common Myths and Misconceptions
• 22:00 – Gastroparesis and IBD Overlap
• 24:57 – Diagnostic and Treatment Challenges
• 27:32 – GPACT Resources and Support
• 31:32 – Advice for Suspected Gastroparesis Patients
• 33:09 – How to Connect with GPACT
• 36:18 – Samantha's Treadmill and Movement Routine
• 38:42 – Closing Remarks and Gratitude

More information on the topics discussed:

• Surviving Out of Spite Podcast via YouTube
• Esophagogastroduodenoscopy (EGD) Is a Procedure to Examine Your GI Tract via Verywell Health
• Metoclopramide: Treatment for Nausea & Vomiting
• Relationship Between Gastroparesis and Inflammatory Bowel Disease: A United States Nationwide Sized Database Analysis
• Gastroparesis in patients with inactive Crohn's disease: a case series
• Surviving Out of Spite Podcast

Find Samantha Sauer, BCPA and Gastroparesis Patient Association for Cures and Treatments (G-PACT) on:

• Web: www.g-pact.org
• Facebook: @GPACT
• Instagram: @4gpact
• YouTube: @GPACT_nonprofit
• LinkedIn: @gpact

Find Amber J Tresca at:

• AboutIBD.com
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• YouTube: @MacCooneyComposer
• Theme music: IBD Dance Party, © Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber and Mariah discuss how women with chronic illnesses cope with advice on medication use in pregnancy—especially in light of the confusion around acetaminophen. Mariah shares her experiences with rheumatoid arthritis and pregnancy, focusing on changes in medication safety data. They talk about the pressure, stigma, and lack of support for pregnant women, the need for nuanced guidance, and provide resources.

Episode transcript and more information at: https://bit.ly/AIBD188

This episode sponsored by Fathom Care! Fathom is an AI-powered wellness companion made for patients with inflammatory bowel disease. Over 2.4M people in the United States are navigating IBD alone, and Fathom is here to change that. Learn more at: https://fathom.care/

Chapters:

• 00:04 Intro & Guest Introduction
• 01:26 FDA Statement on Acetaminophen & Pregnancy
• 02:55 Concerns About Acetaminophen Guidance
• 04:03 Mariah's RA & Pregnancy Experience
• 07:13 Impact of Medication Decisions
• 07:33 Biologics & Medication Safety
• 09:45 Pressure to Avoid Medications
• 10:05 Balancing Risks: Medication vs. Flare
• 12:06 Stigma & Judgment Around Medication Use
• 13:19 Authority Statements & Social Stigma
• 15:10 "Tough It Out" Mentality
• 17:11 Societal Judgment & Pregnancy Experiences
• 17:53 Infusion Appointments While Pregnant
• 19:09 Sponsor: Fathom Care App
• 20:59 History of Blaming Mothers & Autism
• 22:17 Societal Support & Pregnancy Discrimination
• 24:04 Expectations vs. Realities of Pregnancy
• 25:58 Reframing Autism & Neurodiversity
• 28:15 Resources for Pregnancy & Chronic Illness
• 30:01 Importance of Up-to-Date Data & Planning
• 33:20 Medication Changes & Specialist Involvement
• 34:49 Changing Data & Continuing Education
• 36:25 Mamas Facing Forward: Community & Support
• 38:48 Peer Support & Parenting with Chronic Illness
• 40:08 Mariah's Background & Expertise
• 41:19 Personal Updates & Closing
• 42:42 Final Thoughts & Outro

Concepts discussed on this episode:

• About IBD Podcast Episode 71- I Evaluated What Was Really Important to Me
• Screaming on the Inside: The Unsustainability of American Motherhood — Jessica Grose
• Notice to Physicians on the Use of Acetaminophen During Pregnancy — US FDA
• The IBD Parenthood Project
• Does taking Tylenol during pregnancy cause autism? The evidence says 'no.' — UCHealth
• MotherToBaby, a service of the Organization of Teratology Information Specialists
• Drugs and Lactation Database (LactMed®)
• PIANO (Pregnancy Inflammatory bowel disease And Neonatal Outcomes) Study

Find Mariah Leach, JD, MS at:

• Web: MamasFacingForward.com
• Instagram: @mamasforward
• Facebook: @mamasfacingforward
• LinkedIn: @mariahzebrowski

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Sean Lochran, who lives with IBD and an ileostomy, describes his IBD journey, including complications such as blood clots and adrenal insufficiency. Sean shares advice for staying active on difficult days, including the importance of personalization, hydration, and tracking health data. He debunks misconceptions about exercise with IBD or an ostomy and describes his client-centered approach to fitness coaching, grounded in empathy and lived experience.

Episode transcript and more information at: https://bit.ly/AIBD187

This episode sponsored by Fathom Care! Fathom is an AI-powered wellness companion made for patients with inflammatory bowel disease. Over 2.4M people in the United States are navigating IBD alone, and Fathom is here to change that. Learn more at: https://fathom.care/

Chapters in this episode:

• 00:04 – Introduction and Guest Welcome
• 01:20 – Sean’s Diagnosis Journey
• 02:59 – Complications: Adrenal Insufficiency and Prednisone
• 04:08 – Living with Adrenal Insufficiency
• 05:34 – Blood Clots and IBD
• 08:36 – Mental Impact of Complications
• 10:20 – Pre-Diagnosis Fitness and Lifestyle
• 12:29 – Managing Fatigue and Flare-Ups
• 14:23 – Sponsor Message: Fathom Care App
• 16:15 – Coaching Clients: Fatigue vs. Tiredness
• 17:32 – Tracking and Adjusting Fitness Plans
• 18:55 – Practical Tips for Staying Active During Flares
• 23:47 – Weekly Averages and Progress Tracking
• 25:21 – Misconceptions About Fitness and IBD
• 26:50 – What It’s Like to Work with Sean
• 30:38 – Learning to Understand Your Body
• 31:45 – Visiting Scotland: Local Recommendations
• 34:27 – How to Connect with Sean
• 36:04 – Closing Remarks and Credits

Find Sean Lochran at:

• Instagram: @seanlochrancoaching

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Every person living with inflammatory bowel disease (IBD) can help change public policy by sharing their story and participating in advocacy events, such as visiting legislators in Washington, D.C. Amber talks to Kelly E. Dwyer, who teaches us how to prepare an elevator speech and gives us practical tips for Hill Day logistics, working within teams, staying emotionally resilient, and following up with staffers. Advocacy is for everyone, and persistence and collaboration can lead to real policy changes to benefit the IBD and chronic illness communities. By the end of the episode, you'll have the real resources you can use to do this work as a patient advocate both locally and nationally. This episode is sponsored by Connecting to Cure. Transcript and more information: https://bit.ly/AIBD186 Chapters: * 00:05 Introduction and Guest Background * 01:23 The Role and Nature of Patient Advocacy * 02:37 The Long Game of Advocacy: Successes and Challenges * 04:37 Advocacy vs. Activism and Personal Motivation * 06:05 The Importance of Patient Stories in Advocacy * 06:52 Crafting and Delivering Your Elevator Speech * 11:46 Managing Emotions and Practicing Your Story * 15:42 Preparing for Advocacy Day: Research and Teamwork * 18:07 Training and Building Confidence for Hill Visits * 20:58 Coordinating with Your Advocacy Team * 22:38 Practical Logistics: What to Wear and Security * 24:42 Navigating Capitol Hill: Accessibility and Facilities * 29:26 Managing the Day: Scheduling and Flexibility * 32:17 During the Meeting: Structure and Communication * 36:04 Group Dynamics and Respectful Storytelling * 40:29 Building Relationships and Following Up * 42:12 How to Get Involved with Advocacy Groups * 44:42 Financial Considerations and Accessibility * 45:17 Encouragement and Closing Thoughts on Advocacy * 47:12 Lessons Learned the Hard Way * 50:33 Closing Remarks and Gratitude * 51:22 Outro and Credits

Topics on this episode: * Overview of inflammatory bowel disease (IBD), including Crohn's disease and ulcerative colitis. * Personal experiences of living with IBD and the impact on daily life. * The role of patient advocacy in improving healthcare policies and patient rights. * Challenges faced by patients regarding insurance barriers and treatment access. * Importance of sharing personal stories with legislators to influence policy change. * Distinction between activism and advocacy in the context of healthcare. * Strategies for effective communication and preparation for advocacy efforts. * The significance of teamwork and collaboration in advocacy initiatives. * Resources and organizations that support IBD advocacy and patient education. * Emotional aspects of sharing health experiences and the importance of building relationships with legislative staff.

Find Kelly E. Dwyer at: * Web: https://www.keepingmyshittogether.com * Twitter: @keepingmyshitTG * Instagram: @keepingmyshittogether

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

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Amber interviews artist Daniel Leighton, who shares his journey living with Crohn's disease from childhood. Daniel tells us how he didn't think of himself as an artist, but painting became a vital tool for expressing emotions and coping with complex PTSD related to chronic illness. He offers some advice for those intimidated by starting a journey into creativity and describes how art validates the experiences of people with chronic illness. Daniel's artwork, inspired by his medical journey, helps others with IBD feel seen and less alone, highlighting the role of art in emotional healing and community connection.

This episode contains a discussion of medical trauma and complex PTSD (post-traumatic stress disorder), so please take care when listening. Check the show notes for a description and time stamps, in case you want to skip certain sections.

Episode transcript and more information at: https://bit.ly/AIBD185

Chapters: * 00:01 Intro & Content Warning * 2:40 Daniel’s IBD Journey & Surgeries * 5:15 Early J-Pouch Surgery * 6:24 Discovering Art as an Outlet * 11:24 Art for Processing Trauma * 15:21 Getting Started with Art * 17:23 Art, PTSD & Chronic Illness * 18:43 Connecting to Cure * 19:57 Evolution of Artwork * 21:30 Depicting Pain in Art * 22:39 Trying New Things * 23:44 Specific Artworks & Meanings * 29:24 First Surgery & Trauma * 33:12 Evolving Trauma Over Time * 34:22 Art as a Bridge * 38:08 Medical Restraint Trauma * 40:52 Power of Not Feeling Alone * 42:15 Lessons Learned the Hard Way * 43:56 “Here Comes the Flood” * 46:49 Self-Compassion & Healing Timelines * 47:55 Ballroom Dancing & New Experiences * 50:38 Where to Find Daniel’s Art * 51:44 Closing & Credits

Topics discussed on this episode: * The role of art as an outlet for expressing emotions related to living with inflammatory bowel disease (IBD). * Personal experiences of living with Crohn's disease, including diagnosis and surgeries. * The therapeutic benefits of using art to process trauma and cope with chronic illness. * Practical advice for using art as a form of emotional expression, regardless of artistic skill level. * The importance of self-compassion and recognizing individual healing timelines. * The impact of trauma on emotional expression and the need for safe spaces to feel emotions. * The evolution of personal artwork and its connection to experiences with IBD. * Encouragement to embrace intimidating activities as a means of personal growth and healing. * The significance of creating visual representations of emotions, such as "pain charts." * The importance of community and connection in the journey of living with chronic illness.

Links to information mentioned in this episode: * Miller-Ocuin JL, Dietz DW. The Evolution of Pelvic Pouch Surgery: Optimal Pouch Design for an Ileal Pouch Anal Anastomosis. Clin Colon Rectal Surg. 2022;35(6):453-457. doi:10.1055/s-0042-1758135. * Morgan Check, NP: @morgancheckgastronp * Taft TH, Bedell A, Craven MR, Guadagnoli L, Quinton S, Hanauer SB. Initial Assessment of Post-traumatic Stress in a US Cohort of Inflammatory Bowel Disease Patients. Inflamm Bowel Dis. 2019;25(9):1577-1585. doi:10.1093/ibd/izz032. * Gomez DA, Ahmad-Waqar M, Brookes MJ, Kumar A. IBD-related mental health disorders: where do we go from here? Frontline Gastroenterol. 2023;14(6):512-520. doi:10.1136/flgastro-2023-102403.

Find Daniel Leighton at:

• Facebook: @DanielLeightonArt
• Instagram: @DanielLeightonArt
• Substack: @danielleightonart
• Artwork: https://danielleighton.com/art-inspired-by-living-with-crohns-disease-ulcerative-colitis-a-deep-dive-into-personal-experiences/
• YouTube: https://www.youtube.com/channel/UCdxRCTh6aPaaEgX07agRsFg
• Web: https://danielleighton.com/

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Episode transcript and more information at: https://bit.ly/AIBD184 Amber talks with Aaron Blocker, a Crohn’s disease patient and advocate, about the importance of finding and creating community for people touched by IBD. Online and in-person groups offer support and serve as platforms to share practical tips and counter misinformation. Aaron points out that it’s important to find a balance between advocacy, health, and personal life when offering support to others. Both emphasize the value of authenticity and learning from mistakes. The conversation stresses the importance of caring for mental health, the power of connection, and staying true to one’s own reasons for taking part in community. Topics discussed on this episode: * Importance of community for people living with inflammatory bowel disease (IBD) * Challenges and rewards of sharing disease experiences online * Navigating negative comments and misinformation in online communities * Strategies for engaging with IBD communities and providing support * Balancing community involvement with personal health and family life * Mental health considerations when participating in online discussions * Importance of authenticity and passion in advocacy work * Addressing misinformation and promoting accurate health information within the community

Chapters: * 0:05 Intro & Sponsor * 1:23 Aaron’s Background & Group Origin * 5:30 Power of Community * 8:08 Support in Community * 11:44 Getting Involved in IBD Communities * 15:16 Before Sharing Online * 16:15 Motivation & Authenticity * 19:10 Combating Misinformation * 25:20 Boundaries & Balance * 31:52 Mental Health & Selective Sharing * 34:55 Handling Criticism & Mistakes * 38:11 Referring Out & Collaboration * 39:18 Responding to Criticism * 40:13 Aaron’s Socials & Closing * 41:53 Outro & Credits

Find Aaron Blocker at:

• Facebook: @SupportIBD
• YouTube: @aaronblocker
• Instagram: @AaronBlocker_
• Web: https://www.aaronblocker.com

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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We get back to the basics of inflammatory bowel disease (IBD), including the differences between Crohn’s disease, ulcerative colitis, and how IBD is different than irritable bowel syndrome (IBS). IBDologist Dr Katie Dunleavy explains common symptoms, the diagnostic process, and treatment options, focusing on patient advocacy, regular screenings, and open communication with physicians and other healthcare providers. Also included is the importance of diet, stress management, second opinions, and multidisciplinary care in managing IBD. If you or your loved one lives with IBD, you will learn something new, and if there's someone in your life who could use help in understanding IBD, this is the episode to share with them. Episode transcript and more information at: https://bit.ly/AIBD183 Topics discussed on this episode: * Definition and overview of inflammatory bowel disease (IBD) * Differences between IBD and irritable bowel syndrome (IBS) * Types of IBD: Crohn's disease, ulcerative colitis, indeterminate colitis, and microscopic colitis * Common symptoms associated with IBD * Diagnostic processes and tests for IBD * Treatment options and the importance of personalized care * Role of diet and lifestyle changes in managing IBD * Importance of mental health and stress management in IBD care * Ongoing monitoring and screening for colorectal cancer in IBD patients * Advocacy for patient-centered care and the need for multidisciplinary approaches in IBD management

More information on the topics discussed: * Understanding Toxic Megacolon: https://www.verywellhealth.com/toxic-megacolon-1943111 * How Inflammatory Bowel Disease (IBD) Is Diagnosed: https://www.verywellhealth.com/ibd-diagnosis-1942637 * IBD vs. IBS: Understanding the Differences: https://www.verywellhealth.com/ibd-vs-ibs-11714235 * Inflammatory Bowel Disease (IBD) Medications & Treatment: https://www.verywellhealth.com/comparing-biologic-medications-for-ibd-4116127 * Understanding Indeterminate Colitis: https://www.verywellhealth.com/what-is-indeterminate-colitis-4142657 * Types of Colitis: Everything You Should Know: https://www.verywellhealth.com/types-of-colitis-5198817

Find Katie Dunleavy, MB, BCh, BAO at: * Web: Massachusetts General Hospital * Twitter/X: @dunleavy_katie * Research Gate: Katie Dunleavy, MB, BCh, BAO

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD * Bluesky: @aboutibd.bsky.social

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio

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Stress is a huge problem for people who live with immune-mediated conditions like Crohn's disease or ulcerative colitis. The condition causes tension in all the parts of our lives. We can't get rid of it, so we need to find ways to either minimize it or manage it. I talk to Dr. Jin Lee, neuropsychologist and CEO of IMIdeology, about managing stress while living with chronic inflammatory diseases like IBD and lupus. We discuss the impact of chronic stress on health, the challenges of fragmented care, and the benefits of a multidisciplinary, holistic approach. Dr. Lee shares practical, easy-to-implement stress management tips that you can do even when sitting at a stoplight! Plus, we tell you about the upcoming "Bridging Autoimmunity: Patient Forum" taking place on September 13th in Dobbs Ferry, NY. You'll come away from this episode understanding how integrated care, community support, and small daily habits can improve quality of life with chronic illness. Episode transcript and more: https://bit.ly/AIBD182 Register for the Bridging Autoimmunity: Patient Forum on September 13th, 2025! 0:04 Intro & Guest Background 2:55 Motivation & Clinic Model 4:53 Illness & Stress 5:16 Stress in Chronic Illness 7:28 Invisible Illness & Advocacy 8:38 Stress Management & Pilot Program 10:40 Wearables & Health Coaching 12:18 Research vs. Real Life 16:13 Building Habits 18:43 Autoimmunity Forum 22:34 About the Clinic 24:49 Connect & Learn More 26:20 Closing & Resources Topics in this episode include: ✨ Managing stress while living with chronic illness ✨ Impact of chronic inflammatory conditions on physical and emotional health ✨ Importance of a multidisciplinary care approach for chronic illnesses ✨ Challenges of fragmented healthcare and communication among specialists ✨ Stress management strategies for patients with chronic pain ✨ Role of small, manageable habits in building resilience ✨ Addressing the gap between research and real-life patient experiences ✨ Upcoming Bridging Autoimmunity Patient Forum and its offerings ✨ Integrated, patient-centered care for chronic inflammatory diseases ✨ Community support and resources for individuals with autoimmune conditions Find IMIDeology at: * Web: https://www.imideology.com/ * Instagram: @imideology1 * Facebook: @IMIDeology * Tik Tok: @imideology * LinkedIn: IMIDeology

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio

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A children's book leads to this conversation, which bridges the worlds of chronic illness, creativity, and connection. I talk with MB (Britt) Mooney, author of "The Mouse Who Couldn't Eat Cheese," a children's book inspired by a young woman named Alex who lived with severe Crohn's disease. MB, a science fiction and fantasy author, stepped outside his usual genre to create a story that helps kids and families understand invisible illnesses and the power of friendship. You'll hear behind-the-scenes insight on MB's creative process, the lessons learned from working with Alex's family, and the message he hopes every reader takes away—whether they live with inflammatory bowel disease or not. Episode transcript and more information at: https://bit.ly/AIBD181 Topics in this episode include: 🦉 Representation of chronic illness, specifically Crohn's disease, in children's literature. 🦉 The importance of empathy and understanding in friendships, especially for children with chronic illnesses. 🦉 The challenges faced by children with Crohn's disease and the need for social inclusion. 🦉 The creative process involved in writing a children's book and the balance required in storytelling. 🦉 The role of creativity in problem-solving and fostering community. 🦉 The significance of raising awareness about chronic illnesses through literature. 🦉 The broader themes of connection, support, and validation for children facing health challenges. Find MB Mooney at: * Buy The Mouse Who Couldn't Eat Cheese * Web: https://www.mbmooney.com/ * Instagram: @authormbmooney * Facebook: @MooneyMB * LinkedIn: @britt-mooney-89820b52

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Episode transcript and more information at: https://bit.ly/AIBD180 Grassroots organizations are an important part of the IBD landscape, helping fill in the many gaps in our underserved community. Amber talks with Angela Clark, president and CEO of Propel a Cure, a grassroots nonprofit that funds research projects looking for the causes of Crohn's disease. They discuss the challenges of finding cures for IBD and the importance of supporting innovative, early-stage research. Angela explains their grant selection process, highlights current research they fund, and shares how the organization communicates complex science to the IBD community. Topics in this episode include: * Origins and mission of Propel a Cure, a nonprofit organization focused on Crohn's disease research. * Angela Clark's personal connection to Crohn's disease and her role in Propel a Cure. * The grassroots nature of Propel a Cure and its all-volunteer structure. * Challenges and rewards of running a nonprofit organization dedicated to IBD research. * Funding strategies for innovative research projects related to Crohn's disease. * Importance of raising awareness and combating misconceptions about Crohn's disease. * Overview of current research projects funded by Propel a Cure and their scientific approaches. * The role of a scientific advisory board in evaluating research proposals. * Communication strategies for making complex scientific research accessible to the IBD community. * Future goals for expanding funding capacity and building partnerships within the IBD space.

More information: * Propel a Cure Videos (interviews with leading IBD researchers) * Propel a Cure Newsletter * Donate to Propel a Cure

Find Propel a Cure at: * Web: PropelACure.org * Twitter: @propelacure * Instagram: @propelacure * Facebook: @propelacure * LinkedIn: @propel-a-cure-for-crohn-s-disease * YouTube: @propelacure

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio

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Amber speaks with Hindy Klein, a member of the Orthodox Jewish community living with Crohn’s colitis. Hindy shares how she manages IBD while observing Jewish laws, discussing challenges with diet, fasting, and hospital care during Shabbat and holidays. She also talks about overcoming stigma, the importance of community support, and how her faith helps her cope. The episode highlights the need for cultural sensitivity in healthcare and the value of sharing personal stories to support others with chronic illness. Episode transcript and more information at: https://bit.ly/AIBD179 ✨ Intersection of inflammatory bowel disease (IBD) and religious faith ✨ Personal experiences of managing Crohn's colitis within the Orthodox Jewish community ✨ Challenges related to diet, fasting, and hospital care during religious observances ✨ Cultural tendencies towards privacy regarding chronic illness in the Jewish community ✨ Importance of community support and mutual aid in times of health crises ✨ Navigating healthcare communication with providers unfamiliar with religious customs ✨ The role of spirituality and trust in G-d as coping mechanisms for chronic illness ✨ Advocacy and openness about health experiences to combat stigma ✨ Balancing personal health needs with religious obligations ✨ The impact of social media in connecting with others and finding support within the IBD community Topics discussed in this episode: * Ulcerative Colitis vs. Crohn's Disease: What's the Difference? * Crohn's Colitis: A Type of Crohn's Disease

Find Hindy (Tauber) Klein at: * Instagram: @Hopeinhindy * Tik Tok: @hopeinhindy

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber interviews Dr. Ali Navidi, a gastropsychologist specializing in mental health for people with gastrointestinal disorders. They discuss the importance of addressing mental health alongside conditions like IBD and IBS, highlighting the stigma surrounding these issues. Dr. Navidi explains cognitive behavioral therapy (CBT) and clinical hypnosis, emphasizing their effectiveness in managing symptoms. He also shares insights on the challenges of accessing mental health care and introduces a new therapeutic group program for IBD patients developed in collaboration with the Crohn's and Colitis Foundation, aimed at making treatment more accessible and affordable. Episode transcript and more information at: https://bit.ly/AIBD178 * Mental health challenges associated with inflammatory bowel disease (IBD) * Stigma surrounding mental health in gastrointestinal disorders * The connection between mental and physical health in digestive disorders * Disorders of gut-brain interaction and their implications * Importance of seeking support and building a network for mental health * Role of cognitive behavioral therapy (CBT) in treating GI disorders * Use of clinical hypnosis for managing pain and anxiety * Access to specialized mental health care for patients with GI disorders * Development of therapeutic groups for IBD patients * Need for specialized training for mental health professionals in GI disorders

Find Dr. Ali Navidi and GI Psychology at: * Web: https://www.gipsychology.com/ * Facebook: @GIPsychology * Instagram: @gipsychusa

More information on the topics we discussed: * IBD Psychotherapy Group: https://www.gipsychology.com/ibdgroup/ * PsyPact: https://psypact.gov/ * Dr. Navidi’s discussion with Dr. Mark Mattar (Medstar Georgetown) and Kate Wheeling of The Atlantic about the impact of Clinical Hypnosis on IBS: https://www.gipsychology.com/2023/11/30/gi-psychology-and-the-atlantic-discuss-clinical-hypnosis-for-ibs/ * Dr. Navidi’s interview with Elizabeth Chang of the Washington Post to talk Clinical Hypnosis and IBS: https://www.gipsychology.com/2022/10/04/gi-psychology-director-dr-ali-navidi-talks-to-the-washington-post/

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Elizabeth Coldrick, a nutritional therapist and breathwork facilitator living with IBD and a permanent ostomy shares her experiences living in Bali, the challenges and benefits of managing IBD abroad, and the importance of nutrition and breathwork for mental and physical health. She explains how breathwork can reduce stress and inflammation, offers a simple breathing exercise, and discusses her new nutrition e-book for people with ostomies. The episode highlights self-care, community, and practical strategies for living well with IBD. Episode highlights * The connection between breathwork and mental health, particularly for individuals with inflammatory bowel disease (IBD). * The significance of breathwork in managing stress and promoting overall well-being. * Personal experiences of living with IBD and an ostomy, including challenges faced while living abroad. * The impact of lifestyle changes, such as diet and exercise, on health while living in a different country. * The physiological effects of breathwork, including its ability to lower cortisol levels and reduce inflammation. * Different types of breathwork practices and their emotional and physical effects. * The importance of finding qualified breathwork practitioners and creating a safe environment for participants. * The role of nutrition in managing IBD and the development of resources tailored for individuals with ostomies. * The benefits of community support for individuals living with chronic health conditions. * A simple breathing exercise to encourage listeners to incorporate breathwork into their daily routines.

Find Elizabeth Coldrick and Wildly Brave Wellness at: * Web: https://wildlybravewellness.com/ * Instagram: @wildlybravewellness_ * Free Happy Gut Guide: https://go.wildlybravewellness.com/happy-gut-guide * Stoma Recipe eBook: https://wildlybravewellness.com/delicious-stoma-ibd-recipe-nutrition-ebook * Sound Healing Videos: https://www.youtube.com/watch?v=62yWpuNrSgI

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD177 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Jonathan Stewart, co-founder of Evergreen Adventures, a nonprofit focused on connecting the chronic illness community with outdoor activities, shares his journey with type one diabetes, ulcerative colitis, and sarcoidosis. Jonathan emphasizes the importance of staying active despite health challenges, describes the need for planning outdoor adventures, and encourages everyone to find joy in nature, no matter the circumstances. Concepts discussed on this episode: * Personal experiences with chronic illnesses, including ulcerative colitis and type one diabetes. * The journey of misdiagnosis and the challenges of managing chronic conditions. * The emotional impact of surgical decisions, such as colectomy and living with an ileostomy. * The importance of community support and advocacy for individuals with chronic illnesses. * The significance of restroom access and related laws for those with inflammatory bowel disease (IBD). * The role of outdoor activities in promoting physical and mental well-being for people with chronic conditions. * The founding and mission of Evergreen Adventures to facilitate outdoor experiences for the chronic illness community. * The complexities of living with multiple overlapping health conditions. * The importance of self-advocacy and collaboration with healthcare providers. * Encouragement to redefine personal adventures and find joy in small moments despite health challenges.

Information on Restroom Access Laws: * Digital I Can't Wait Card via Bladder and Bowel Support Company * I Can't Wait Card with membership via the Crohn’s & Colitis Foundation * This Can’t Wait card via Guts UK Charity * What is The Restroom Access Act? via United Ostomy Associations of America * Help Pass a Local Restroom Access Law in Your Community via the Crohn’s & Colitis Foundation * State Legislature Websites

Find Jonathan Stewart and EverGreen Adventures at: * Web: https://www.egadventures.org/ * Instagram: @evergreen_adventures_mt

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD176 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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In this episode, Victoria, founder of GetYourBellyOut, shares her journey with ulcerative colitis and the importance of community support for those with inflammatory bowel disease (IBD). She discusses her diagnosis experience, the challenges of navigating healthcare, and the need for better patient advocacy. Victoria highlights the organization's growth, its initiatives like the IBD Nurse Helpline leaflets, and the significance of connecting patients with healthcare providers. She emphasizes the importance of funding to expand their services and create more opportunities for support, while also reflecting on the personal connections that drive her passion for this work. Topics covered on this episode: * Personal journey with ulcerative colitis and diagnosis experience * Emotional and physical challenges of living with inflammatory bowel disease (IBD) * Importance of community support and connection for individuals with chronic illnesses * Founding and evolution of the organization "GetYourBellyOut" * Advocacy and awareness efforts for IBD and its impact on patients * Family dynamics and the effects of IBD on relationships * Role of social media in connecting individuals with IBD * Challenges of being a public figure in the IBD community * Importance of patient feedback in improving care and resources * Future goals and initiatives for expanding support and resources for those affected by IBD

Find GetYourBellyOut on: * Web: https://getyourbellyout.org.uk/ * Facebook: @getyourbellyout * Twitter: @getyourbellyout * Instagram: @getyourbellyout_official * LinkedIn: @getyourbellyout-cic * Tik Tok: @getyourbellyout_official

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD175 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber and gastroenterologist Dr Neil Parikh discuss technology’s impact on IBD management. Dr Parikh emphasizes the importance of patient diaries and open communication between patients and providers. They also address concerns about data privacy, integrating holistic approaches in patient care, and the potential of wearable technology in gastroenterology. Find Neil D. Parikh, MD at: * Web: Connecticut GI * LinkedIn: Neil D. Parikh, MD

Find The Gut Doctor Podcast at: * RSS feed * Apple Podcasts * Spotify * All other podcast apps

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD174 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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People with Crohn's disease or ulcerative colitis (forms of inflammatory bowel disease, or IBD) were told for many decades that diet didn't affect the disease. Even today, some patients are still told this, even though there is now significant evidence that diet absolutely matters in IBD. Stacey Collins, MA, RDN/LDN describes how her journey with ulcerative colitis led to j-pouch surgery. Her philosophy as a registered dietician is one of “nutrition by addition" rather than by dietary restriction. Stacey also focuses on the emotional aspects of eating with IBD, including the understandable fear and anxiety around food. Topics discussed: * The role of diet in managing inflammatory bowel disease (IBD). * Personal experiences with ulcerative colitis and dietary management. * The misconception that diet does not impact IBD management. * The philosophy of "nutrition by addition" versus dietary restrictions. * The importance of individualized dietary approaches for IBD patients. * The impact of food on gut health and bacterial diversity. * Emotional aspects of eating with IBD, including fear and anxiety around food. * The significance of finding joy in cooking and eating. * Practical dietary recommendations for IBD patients, including the Mediterranean diet. * The importance of community support and connection in managing IBD.

Find Stacey Collins, MA, RDN/LDN at: * Stacey Collins Nutrition: https://www.staceycollinsnutrition.com/ * Twitter: @staceynellc_rd * Instagram: @staceynellc_rd * LinkedIn: @stacey-cutler-collins

Publications from Stacey Collins, MA, RDN/LDN: * Scarlata K, Zickgraf HF, Satherley RM, et al. A Call to Action: Unraveling the Nuance of Adapted Eating Behaviors in Individuals with GI Conditions. Clin Gastroenterol Hepatol. Published online December 14, 2024. doi:10.1016/j.cgh.2024.11.010 * Collins S, DIGID Inflammatory Bowel Diseases Workgroup. Iron in GI conditions. Patient.Gastro.org. 2024. https://patient.gastro.org/iron-in-gi-conditions/ * Collins S, Castelan VC, Wernick R, et al. Effects of nutrition status and perioperative nutrition supplement completion on postoperative outcomes in patients with inflammatory bowel disease undergoing surgery. Gastroenterology. 2024;166(3):S22-S23. doi:10.1053/j.gastro.2023.11.081 * Collins S. Surgery and Nutrition. Crohn’s & Colitis Foundation. 2024. https://www.crohnscolitisfoundation.org/patientsandcaregivers/diet-and-nutrition/surgery-and-nutrition. * Nishioka H, Hasegawa Y. Addressing sarcopenia in people with disabilities: definition, assessment, and nutritional care. Medical Nutrition Matters. Reviewed by Collins S. October 1, 2024. https://www.eatrightstore.org/dpg-and-mig-products/dmnt/addressing-sarcopenia-in-people-with-disabilities-definition-assessment-and-nutritional-care.

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD 173 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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IBD patients are innovative, resilient, and powerful. My guest, Rachel Bee, is an incredible example of all these virtues. Rachel is a remarkable 17-year-old entrepreneur who was diagnosed with Crohn's disease at just 13 years old. She turned her experiences with IBD into a mission to help others by founding Infusion Hero, a company that designs innovative hoodies specifically for young patients receiving infusions. Infusion Hero hoodies provide comfort and feature a unique design that allows for easy access during medical treatments. Rachel shares her story of navigating the challenges of her diagnosis, balancing high school, and running a business—all while maintaining her health and staying connected with friends. Don't miss Rachel's insights on how to turn personal challenges into opportunities for growth and innovation. Discussion points include: * Personal health journeys related to inflammatory bowel disease (IBD) * Experiences of living with Crohn's disease as a teenager * The impact of chronic illness on daily life and activities * The importance of education and support for young patients with IBD * The creation and purpose of Infusion Hero, a clothing line for infusion patients * Balancing health, school, and entrepreneurial endeavors * The role of mentorship and resources for young entrepreneurs * Emotional aspects of managing chronic illness during adolescence * The significance of community support and relationships with peers and teachers * Future aspirations and educational goals for young patients and entrepreneurs

Find Rachel Bee of Infusion Hero at: * Web: https://www.infusionhero.com/ * LinkedIn: Rachel Bee * Facebook: Infusion Hero * Instagram: @infusion_hero * Tik Tok: @infusion.hero

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD172 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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It's not easy to manage both a career and chronic illness like inflammatory bowel disease (IBD, Crohn's disease, or ulcerative colitis). We need tools and tips in order to keep everything moving and succeed at work while caring for ourselves. I talk with Jen Hubley Luckwaldt about how freelancing can be a valid way of meeting both goals. Jen shares her journey from traditional employment to freelancing, including how it offers her flexibility in balancing work, health, and family. We talk about the importance of setting boundaries with clients, how to identify your marketable skills, and building a supportive community. Jen emphasizes the value of an abundance mindset in freelancing and offers practical tips for finding work and managing time effectively. If you've ever wondered how you can manage to work while still making it to infusions and appointments: we have a roadmap for you. Episode highlights: * Managing a career while living with inflammatory bowel disease (IBD) * Challenges of maintaining traditional full-time employment with chronic illness * Advantages of freelancing, including flexibility and work-life balance * Importance of setting boundaries with clients * Identifying marketable skills for freelancing * The role of community and support in a freelance career * Strategies for effective communication and feedback in professional settings * Tools and resources for freelancers to enhance productivity * The concept of an abundance mindset in freelancing

Find Jen Hubley Luckwaldt and The Job Hopper at: * The Job Hopper: https://thejobhopper.substack.com * Bluesky: @jenlucky.bsky.social * Old Mom Things: https://oldmomthings.substack.com/ * LinkedIn: @jen-hubley-luckwaldt

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD 171 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Do you find it difficult to find the time and energy to deal with mental or physical clutter? Lisa Zawrotny, a productivity coach and founder of Positively Productive Systems, helps us learn how to manage clutter, even when flaring. We discuss practical strategies for decluttering both your physical space and mental load, and how to celebrate even the smallest victories in your day-to-day life. Plus, Lisa reveals her insights on creating systems that work for you, no matter your circumstances. If you’ve ever felt weighed down by expectations or struggled to find balance, this episode is packed with valuable takeaways that can help you reclaim your time and energy. Key points: * Intersection of productivity and chronic illness * Challenges faced by caregivers and individuals with chronic conditions * Personal journey of caregiving and its impact on productivity coaching * Importance of compassion and realistic approaches to productivity * Strategies for managing stress and clutter * Prioritization of tasks and setting boundaries * Techniques for decluttering and energy management * Celebrating small wins and acknowledging achievements * The role of journaling in emotional healing and reflection * Building community and support for individuals with chronic illnesses

Episode sponsored by Connecting to Cure Crohn's and Colitis. Find Lisa Zawrotny of Positively Productive Systems at: * Web: www.positivelyproductive.com * LinkedIn: @positivelyproductive * Facebook: @positivelyproductive * Twitter: @positively_lisa * Instagram: @positively_lisa * YouTube: @positively_lisa * Tik Tok: @positivelylivingpodcast * Pinterest: @positivelyproductive

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD170 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Danielle Barlieb was diagnosed with Crohn's disease in childhood. She discusses her experiences with diagnosis, surgeries, and becoming a mother, including the challenges of a permanent ileostomy. Danielle emphasizes the importance of mental health, sharing her struggles and the support she received from her family. She also talks about dating with an ostomy, encouraging others not to let fear hold them back. Finally, she highlights her son's interests and the joy he brings to her life, along with resources for women with inflammatory bowel disease. Information and resources discussed on this episode include: * National Alliance on Mental Illness * Suicide Hotlines and Prevention Resources Around the World * Girls with Guts * Camp Oasis * IBD Parenthood Project * PIANO (Pregnancy Inflammatory bowel disease And Neonatal Outcomes) Study

Find Danielle Barlieb at: * Tik Tok: @always.danielle.barlieb * Instagram: @always.danielle.barlieb

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD169 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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There's a need for more research addressing social determinants of health in the inflammatory bowel disease (IBD) community. Cass Condray, an IBD researcher who also lives with an IBD, points out the lack of information and resources focused on the unique experiences of LGBTQ patients. Cass also talks about the significance of representation in research, and the impact that intersecting identities have on people's health outcomes. Plus, we talk about Cass' web site, PrideAndPoop.com, what his hopes are for the future, and what there is to do in Oklahoma. Find Cass Condray at: * Web: Pride and Poop * Bluesky: @cdalecondray.bsky.social * LinkedIn: Cass Condray * Google Scholar: Cass Dale Condray

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD168 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber hands over hosting duties to Jamie Holland, a patient advocate with Crohn's disease. They discuss their personal experiences with inflammatory bowel disease (IBD). They focus on Amber's decision to have j-pouch surgery after being diagnosed with dysplasia and the effects it had on her fertility. Jamie asks Amber to share about the emotional and physical challenges of motherhood with IBD, including fatigue and guilt. They also touch on the possibility of passing IBD on to children and the importance of community and support. Concepts discussed on this episode: * Xue M, Leibovitzh H, Jingcheng S, et al. Environmental Factors Associated With Risk of Crohn's Disease Development in the Crohn's and Colitis Canada - Genetic, Environmental, Microbial Project. Clin Gastroenterol Hepatol. 2024;22(9):1889-1897.e12. doi:10.1016/j.cgh.2024.03.049. * Singh N, Bernstein CN. Environmental risk factors for inflammatory bowel disease. United European Gastroenterol J. 2022;10(10):1047-1053. doi:10.1002/ueg2.12319. * Oh SJ, Kim HJ, Lee CK; Big Data Research Group (BDRG) of the Korean Society of Gastroenterology. A dose-dependent increase in the risk of inflammatory bowel disease after exposure to broad-spectrum antibiotics: A national population study in Korea. Aliment Pharmacol Ther. 2023;58(2):191-206. doi:10.1111/apt.17542 * Growing Up With a Dog Might Lower Crohn’s Risk * My IBD Life Parenthood Project * Inflammatory Bowel Disease (IBD): Everything You Need to Know

Find Jaime Holland at: * Facebook: @prettyrottenguts * Instagram: @prettyrottenguts * Tik Tok: @prettyrottenguts * Bluesky: @prettyrottenguts.bsky.social

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD167 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber is joined by her husband, Mike, who recently underwent robotic hernia surgery. In this candid conversation, they explore the entire experience—from the initial discovery of the hernia to the surgery itself and the recovery process that followed. Mike shares his insights on the challenges he faced, including unexpected pain, dietary adjustments, and the importance of having a supportive caregiver. They also discuss the nuances of patient-provider communication and how to navigate the complexities of post-surgery life. Whether you’re considering surgery or simply curious about the process, this episode offers valuable lessons and firsthand experiences that might resonate with you. Episode transcript and more information at: https://bit.ly/AIBD166 Find Michael Tresca at World of Welstar: * Twitter: @WorldofWelstar * Instagram: @world_of_welstar * Facebook: @worldofwelstar * MeWe: http://tinyurl.com/MeWeTRPG * Threads: http://tinyurl.com/threadsWOW * Bluesky: https://blskyl.ink/worldofwelstar * Amazon: http://amzn.to/41jMn5h * EN World: http://tinyurl.com/ENWRPG * Drive Through RPG: http://tinyurl.com/DTRPGMNT * Patreon: https://www.patreon.com/talien

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber shares some of the books she read over the previous year including biographies, young adult fiction, bestsellers, and romance. Hear about Amber's reading list from 2024, which was truly a mixed bag. The good news is that it contains something for everyone. Plus: learn about how you can read or listen to books for free using your local library — maybe without even leaving your house. Library apps mentioned in this episode: * Libby * Hoopla * Freegal Music

Books mentioned in this episode: * Leave the World Behind by Rumaan Alam * The Giver by Lois Lowry * Warrior Girl Unearthed by Angeline Boulley * The Woman in Me by Britney Spears * My Sister, the Serial Killer by Oyinkan Braithwaite * Yellowface by R. F. Kuang * Everyone Here Is Lying by Shari Lapena * The Cloisters by Katy Hays * Rebel Rising by Rebel Wilson * I am Not Your Perfect Mexican Daughter by Erika L. Sanchez * Once There Were Wolves by Charlotte McConaghy * Hello, Molly! by Molly Shannon * Leslie F*cking Jones by Leslie Jones * Everything, Everything by Nicola Yoon * Funny Story by Emily Henry * Snowglobe by Soyoung Park

Find Katie Connelly and the Chronically Ch(ill) Book Club at: * Instagram * Discord Server

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD165 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What's the difference between ulcerative colitis and Crohn's disease? We talk about them like they're two distinct sides of a spectrum, but there are people who don't have a firm place on that continuum. Amber Tresca talks with Michael Ornelas, host of the "Fine" Dining podcast, about his journey with IBD. Michael was first diagnosed with proctitis, then Crohn's disease, and later, maybe, with ulcerative colitis. Michael shares his experiences with symptoms, treatments, and the impact IBD has on life. But it's not all serious! Michael also talks about his comedy podcast, "Fine" Dining, which encompasses the search for mediocrity in chain restaurants. Maybe an unexpected choice for a project for person with IBD, so they also discuss Michael's unique perspectives on food. Find Michael Ornelas and the "Fine" Dining Podcast at: * Web: https://www.finediningpodcast.com/ * Tik Tok: @finediningpodcast * Instagram: @finediningpodcast * YouTube: @finediningpodcast * Spotify: https://open.spotify.com/show/0YQGBigjvjtme7rYqrHZRw? * Apple Podcasts: https://podcasts.apple.com/us/podcast/fine-dining/id1649646224

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD164 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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For people living with inflammatory bowel disease (IBD), the path to pursuing our dreams can look different from that of our peers. Stand-up comedian Dave Piontkowski, lives with not only ulcerative colitis, but also chronic kidney disease. He developed a one-man show called "Three Kidneys, No Colon," which describes his journey with both of these conditions. Dave talks about how and why his comedy actually improved while he was fighting for his life with kidney disease. He also tells us how his comedy is connecting the chronic illness community, but there are some audience members who find it can be too much.

Find Dave Piontkowski at:

• YouTube: @dpcomedy
• Instagram (check his bio for show tickets): @davepcomedy
• Get tickets to 3 Kidneys No Colon in Tampa, FL on December 7 at 8:00 p.m (The Commodore, 811 E. 7th Ave. Tampa, FL 33602)

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD163

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Alicia and Robin, co-hosts of the "Bowel Moments" podcast, join Amber for a discussion about podcasting in the IBD community. Robin shares her IBD journey, including her diagnosis of ulcerative colitis, the complications that led to an ileal anal anastomosis, the later diagnosis of Crohn's disease, and evebtyak J-pouch surgery. They also talk about the challenges of producing the podcast, the importance of therapy, and keeping up a social media presence. The conversation highlights the emotional and logistical aspects of creating a podcast about IBD. Select episodes of Bowel Moments: * Bowel Moments Episode 1: Get to know your co-host Robin and Alicia! * Bowel Moments Episode 6: A Tale of 2 Surgeries * Bowel Moments Episode 20: Meet Robin's Daughters - Logan & Baylee!

Find Robin and Alicia on Bowel Moments at: * Web: BowelMomentsPod.com * Facebook: @thebmpodcast * Twitter: @bowelmomentspod * Instagram: @bowelmomentspod * LinkedIn: Bowel Moments Pod

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD * YouTube: @AboutIBD * Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * YouTube: @MacCooneyComposer * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD162 These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Stephanie Gish, host of the Crohn's Fitness Food podcast, gives the details of her journey with Crohn's disease and IGA nephropathy. Stephanie's Crohn's symptoms began in 2003, but she was initially misdiagnosed with an anal fissure. After being discharged from the Army for medical reasons unrelated to IBD, she went through years of fragmented care, and finally received a Crohn's diagnosis in 2009. Stephanie brought her knowledge of health and fitness to bear in managing Crohn's, but the diagnosis of IGA nephropathy had her changing course and rethinking her approach.

Buy "Crohn's, Fitness, Food and My Rock Road to Health" at Amazon:

• Paperback
• Ebook
• Audiobook

Find Stephanie Gish at:

• Web: Crohn's Fitness Food
• Facebook: @crohnsfitnessfood
• Podcast: Crohn's Fitness Food
• LinkedIn: @stephlivsey
• Instagram: @crohnsfitnessfood

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD161

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber interviews Alison McGauley, a teacher and author of "Kenzie's Little Tree," a children's book about a girl whose mother lives with chronic illness. Alison shares her journey with ulcerative colitis, irritable bowel syndrome (IBS), and ankylosing spondylitis, and how her hospitalization impacted her two daughters. She emphasizes the importance of talking about illness with children to help them process their emotions. Alison’s book, set to release in March 2025, aims to provide a narrative for families dealing with chronic illness. Pre-orders are available, with proceeds donated to Crohn's and Colitis Canada and the Arthritis Society.

Buy Alison's book: https://www.alisonmcgauley.com/books/my-books

Find Alison McGauley at:

• Web: https://www.alisonmcgauley.com
• Facebook: @author.alison.mcgauley
• Twitter: @AlisonMcgauley
• YouTube: @AlisonMcGauleyAuthor
• Instagram: @alisonmcgauley

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD160

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Is it surprising to learn that some people living with IBD choose to have ostomy surgery? Hannah, a 24-year-old woman, shares her journey through the initial symptoms of IBD at the age of 15, to getting a diagnosis of ulcerative colitis. She describes how her symptoms worsened after diagnosis, including bleeding, bowel urgency, and fatigue, which led to multiple hospitalizations. Hannah advocated for surgery to treat her pancolitis, despite an initial difference of opinion with her medical team. After surgery, Hannah's symptoms were significantly improved and she regained a sense of normalcy in her life. Hannah discusses the pros and cons of choosing an ostomy over a J-pouch, the importance of quality of life, and how surgery could impact her future fertility.

Concepts discussed on this episode:

• Yang X, He M, Tang Q, et al. Assessment of anti-inflammatory efficacy of acupuncture in patients with inflammatory bowel disease: A systematic review and meta-analysis. Complement Ther Med. 2023;74:102946. doi:10.1016/j.ctim.2023.102946.
• Bao C, Wu L, Wang D, et al. Acupuncture improves the symptoms, intestinal microbiota, and inflammation of patients with mild to moderate Crohn's disease: A randomized controlled trial. EClinicalMedicine. 2022;45:101300. doi:10.1016/j.eclinm.2022.101300.
• Bae JH, Kang SY, You SE, Jeong HI, Jang S, Kim KH. The Effects of Acupuncture on Crohn's Disease: a systematic review and meta-analysis. J Pharmacopuncture. 2023;26(3):211-226. doi:10.3831/KPI.2023.26.3.211.

Find Hannah Martin-Spencer on:

• Instagram: @hans_colitisjourney

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD
• https://www.threads.net/@about_ibd

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD159

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Christina King shares her journey with being diagnosed with Crohn's disease in 2021. She was misdiagnosed with gastritis and hemorrhoids, until her severe symptoms of rectal bleeding and weight loss, plus multiple trips to the emergency department led to a hospitalization. An in-patient colonoscopy finally led to a diagnosis of Crohn's, and she was finally able to get treatment and improve. She was unable to go to school with her high school graduating class, and is now ready to start pursuing her dream of becoming a nurse. Christina tells Amber where she went for information in the early days after diagnosis and how she's approaching accommodations for IBD as she begins school.

Find Christina King at:

• Twitter: @cking5498
• Instagram: @christina_king227
• SnapChat: @christinaking16

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell Health: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Instagram: @about_IBD
• YouTube: @AboutIBD
• Threads: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD158

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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The relationship between patient and physician in inflammatory bowel disease (IBD, Crohn's disease, ulcerative colitis) is so critical to the success of the management of the disease. Both the patient and the physician have roles to play in developing and maintaining a good working relationship. One such example of a truly special and inspirational patient-physician relationship is illustrated here between Dr Julie Spivack, a gastroenterologist with Connecticut GI, and Rosa, her patient. Rosa and Dr Spivack discuss their close bond and how the listening, empathy, honesty, and open-mindedness work to build trust and achieve successful outcomes in patient-physician relationships

Find Julie Spivack, MD at:

• Web: Connecticut GI

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD157

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber Tresca and Katie Connelly discuss the challenges and importance of workplace accommodations for individuals with inflammatory bowel disease (IBD). Katie has been through the process of asking for accommodations with different employers and shares her personal experience, emphasizing the need for understanding the Americans with Disabilities Act (ADA). She relates her experience and gives advice to both employers and employees on how to manage the accommodation journey. Plus, she gives the resources that she found most helpful to help her learn about her rights as an employee.

Find Katie Connelly at:

• Spotify: Katie Connelly
• Web: Badass With a Bad Ass
• LinkedIn: Katie Connelly
• Instagram: @badass.w.a.bad.ass

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD156

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Amber is joined by Stacy Dylan, co-founder and executive director of Connecting to Cure Crohn's and Colitis (CtoC). CtoC is a patient advocacy group focused on addressing unmet needs in the IBD community. Stacy founded CtoC to help other families after her son was diagnosed with Crohn's disease. CtoC offers support groups, mentorship programs, and gut-friendly workouts. Stacy offers advice to parents of children with IBD, encouraging them to take things one step at a time and not be overwhelmed by information from the internet.

Follow Connecting to Cure:

• Web: https://www.connectingtocure.org
• Twitter: @connecttocure
• Instagram: @connectingtocure
• Facebook: @ConnectingToCure

Follow Stacy’s Medium page at: https://stacyjdylan.medium.com.

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD155

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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There tend to be more women than men who share their journey with inflammatory bowel disease (IBD, Crohn's disease, ulcerative colitis). The reasons are challenging to uncover, but what's clear is that more can be done to raise the visibility of men living with an IBD, ostomy, or other digestive condition. My guest is Jordan William Henry Aggen, also known as Crohn's Trooper. Jordan emphasizes the importance of open communication, pre-planning, and finding support from friends, family, and social media to cope with the disease.

Concepts discussed on this episode:

• Which is Nerdier: Star Wars or Star Trek?

Find Jordan William Henry Aggen at:

• Facebook: @JWHA2011
• Instagram: @crohnstrooper

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD154

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Dr Iris Wang, assistant professor in the division of Gastroenterology and Hepatology and the Associate Program Director of the GI fellowship at Mayo Clinic in Rochester, Minnesota and Amber Tresca discuss the stigma surrounding gut health and poop. Dr Wang shares the experience of writing a children's book focused on preventing and managing constipation titled "Boo Can't Poo!" They also discuss the challenges of publishing a book on gut health and the potential benefits of talking about poop and toileting, emphasizing the importance of open communication and personalized treatment. Listen to learn about where you can get "Boo Can't Poo!" and how parents with IBD can manage their anxiety around the idea of their kids developing IBD.

Order "Boo Can't Poo!": * Mayo Clinic Press * Amazon * Barnes and Noble * Bookshop.org * Target * Walmart

Find Xiao Jing "Iris" Wang, MD at:

• Twitter: @IrisWangMD
• LinkedIn: @xiao-jing-wang-b755339
• Instagram: @iriswangmd

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD
• YouTube: @AboutIBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• YouTube: @MacCooneyComposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD153

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What is being done to help prevent inflammatory bowel disease (IBD) in the next generation? The Genetic, Environmental, Microbial (GEM) Project is a research study from Crohn's and Colitis Canada (CCC) focused on finding possible causes for Crohn’s disease by following healthy people who are at a higher risk for developing the disease. To talk about GEM, Amber interviews CCC volunteer Chantel Wicks. Chantel is the chapter president for the Durham Region in Ontario and the Chair of their Gutsy Walk, which is a fundraiser and event that takes place every year in the first weekend of June. Learn more about how the GEM Project is uncovering important information on the development of IBD and how to get involved in CCC and The Gutsy Walk.

Find Chantel Wicks on the Guts and Glory Podcast at:

• Web: https://gutsnglory.ca/
• Facebook: @GtsNGlry
• Twitter: @GtsNGlry
• Instagram: @gtsnglry

Find Crohn's and Colitis Canada at:

• Web: https://crohnsandcolitis.ca/
• The Gutsy Walk: https://gutsywalk.ca/
• Facebook: @getgutsycanada
• Twitter: @getgutsycanada
• Instagram: @getgutsycanada

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD152

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Did you notice that suddenly one year you started paying more for your healthcare? Crohn's disease and ulcerative colitis are sometimes treated with medications that are expensive. Manufacturers create programs to help patients afford these drugs. In the beginning, these payments from assistance programs counted toward a yearly health insurance deductible. Then, suddenly: they stopped counting. Overnight, patients found themselves responsible for more costs, while insurance carriers received what amounts to double payments. A 2023 court ruling says that this practice should be reversed again, but it's not happening. Amber McCown tells her story of how a copay accumulator program took her by surprise and why she's partnering with the HIV+Hepatitis Policy Institute and working with legislators and agencies to advocate for change. * Aimed Alliance. How a Loophole in the Patient Protection and Affordable Care Act Can Impact Access To Your Necessary Treatments: https://aimedalliance.org/wp-content/uploads/2022/07/Aimed-Alliance-Non-EHB-Fact-Sheet-FINAL-1.pdf * Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2021; Notice Requirement for Non-Federal Governmental Plans: https://www.federalregister.gov/documents/2020/05/14/2020-10045/patient-protection-and-affordable-care-act-hhs-notice-of-benefit-and-payment-parameters-for-2021 * Copay Accumulator Programs: https://cga.ct.gov/2024/rpt/pdf/2024-R-0034.pdf?t=1713267305928 * State Insurance Departments: https://content.naic.org/state-insurance-departments

From the HIV+Hepatitis Policy Institute: In 2022, the HIV+Hepatitis Policy Institute, two diabetes groups, and individual chronic disease patients filed a lawsuit in the U.S. District Court for the District of Columbia challenging the federal rule that allowed "copay accumulators." Insurers use "copay accumulator" programs to avoid counting the value of copay coupons that patients get from drug manufacturers toward a patient's deductible and out-of-pocket costs -- effectively double charging the patients. In 2023, the court ruled in favor of the plaintiffs and struck down the federal rule that had allowed health insurers to avoid counting copay assistance from drug manufacturers toward a patient's out-of-pocket cost. But the government isn't enforcing the court's ruling, so patients are still subject to copay accumulator schemes. It's bad enough that the federal government is effectively ignoring a court ruling. Far worse is the fact that patients are still being unjustly subjected to copay accumulators that prevent them from being able to afford their prescription drugs as a result. Patients need the federal government to issue a new rule ASAP. Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD151 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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People with IBD are more likely to live with anxiety, depression, or other mood disorders than people who don't live with one of these conditions. For that reason, caring for mental health is as important as caring for physical health. But it doesn't always work out that way, as patients may not know how important their mental health is to their physical health, or may not have access to a mental health professional. Abri Bernstein shares her personal journey with ulcerative colitis (UC) and how somatic psychotherapy helped her cope with living with the disease. Abri explains somatic psychotherapy as a holistic approach to healing that focuses on the body and nervous system regulation. She describes various modalities, such as somatic experiencing, sensorimotor psychotherapy, and acceptance and commitment therapy (ACT), emphasizing the importance of addressing trauma stored in the body for healing to occur.

Resources and information discussed in this episode:

• What Is Somatic Therapy?
• Trauma and the Nervous System: A Polyvagal Perspective
• Polyvagal Institute
• The Trauma Foundation
• Bonaz B, Sinniger V, Pellissier S. Therapeutic Potential of Vagus Nerve Stimulation for Inflammatory Bowel Diseases. Front Neurosci. 2021;15:650971. Published 2021 Mar 22. doi:10.3389/fnins.2021.650971.
• Polyvagal Theory: A Science of Safety

Find Abri Bernstein at:

• Web: Healing With Abri
• LinkedIn: Abri Berstein
• Email: abribern@gmail.com

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD150

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Diagnosed with attenuated familial adenomatous polyposis (AFAP), retired Navy veteran Dan "Dry Dock" Shockley shares his remarkable journey of service, diagnosis, and advocacy. Following his diagnosis, Shockley became a passionate advocate for early detection and reducing the stigma associated with living with an ostomy. He emphasizes the importance of proactive medical care and maintaining a positive attitude in the face of adversity. Through his advocacy work and personal journey, Shockley serves as an inspiration, demonstrating resilience, determination, and a commitment to making a difference for others. Find Dan "Dry Dock" Shockley at: Twitter: @Dryshockley Instagram: @DanDryDock LinkedIn: @Dan Dry Dock Shockley Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD149 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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We can hold two truths: Crohn’s disease is funny. It is also not funny. I speak with Matt Nagin, who has many talents, but we focus on his work as a comedian and actor living with Crohn’s disease. Our discussion focuses on how people need laughter and comedy in their lives. Yet, living with an illness like inflammatory bowel disease (IBD), it can be challenging to find those comedic moments. Especially when most people don’t know what IBD is, and even among those who do, they kind of don’t want to hear about it sometimes. Get tips from Matt on how to form a sense of humor about illness, keep people from getting burned out on you, and think outside the box when it comes to symptoms. Find Matt Nagin at: * Web: mattnagin.com * Facebook: @naginplease * Twitter: @naginplease * Instagram: @naginplease * TikTok: @naginplease * LinkedIn: Matt Nagin

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * LinkedIn: @macooney * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What did you read over the past year? If you made a reading goal: did you hit it? The books I read in 2023 included biographies, fantasy, fiction, and romance. Plus, I had several authors who live with Crohn’s disease or ulcerative colitis on the show this year, so I read their books as well. Hear more about some of the books I enjoyed in 2023, how you can hear more from authors with IBD, and ways that you can hit those reading goals this year.

IBD Author Episodes: * The Plant-Based Crohn’s and Colitis Cookbook – About IBD Podcast Episode 127 * Up and Adam: A Patient’s Experience on Winning with IBD — About IBD Podcast Episode 130 * I Pooped My Pants With April Michelle Harris – About IBD Podcast Episode 133 * Positivity Beats IBD With Josef Miller – About IBD Podcast Episode 143

Books mentioned in this episode: * Why Not Me? - Mindy Kaling * Yes Please - Amy Poehler * Bossypants - Tina Fey * Orange Is the New Black - Piper Kerman * Spare - Prince Harry * Born With Teeth - Kate Mulgrew * Where the Deer and the Antelope Play - Nick Offerman * Fan Fiction - Brent Spiner, Jeanne Darst * Wrong Place Wrong Time - Gillian McAllister * Tomorrow, and Tomorrow, and Tomorrow - Gabrielle Zevin * The Dead Romantics - Ashley Poston * Where the Crawdads Sing - Delia Owens * The House in the Pines - Ana Reyes * The Testaments - Margaret Atwood * The Heart Goes Last - Margaret Atwood * Maid - Stephanie Land * Class - Stephanie Land * Under the Whispering Door - TJ Klune * In the Lives of Puppets - TJ Klune * Long Way Down - Jason Reynolds * Red at the Bone - Jackeline Woodson * Hatchet - Gary Paulsen * The Plant-Based Crohn’s and Colitis Cookbook - Helena Rose Murphy * The Purple Rose - Josef Alexander Miller * I Pooped My Pants - April Michelle Harris * Up and Adam: A Patient's Experience on Winning with IBD - Adam Finkelstein

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * LinkedIn: @macooney * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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A diagnosis of inflammatory bowel disease (Crohn’s disease, ulcerative colitis, IBD) affects the entire family. When it’s a child that’s diagnosed, it changes so many things and brings a host of challenges. Families experience many unmet needs related to IBD. My guest is Lisa Fournier of IBD Connect. Lisa is the mother of two children who live with IBD. Her experiences in helping them manage IBD at different stages in life compelled her to be a support for others. She worked with her local hospital to start a support group and eventually founded IBD Connect. Learn about the programs IBD Connect offers and how the community can support their important mission. Concepts on this episode: * Very Early Onset Inflammatory Bowel Disease (VEO-IBD) * UMass Chan Medical School Center for Applied Nutrition * Methicillin-resistant Staphylococcus aureus (MRSA)

Find IBD Connect at: * Instagram: @ibdconnectinc * Facebook: @IBDConnectInc * Web: IBD Connect, Inc.

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD146 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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My guest is Stephanie Brenner of Chronic Illness Psychotherapy. Stephanie is a Licensed Clinical Social Worker who has experience in working with clients with chronic illnesses. She has also taken on a variety of roles in GI space, including previously serving on both the advisory team for the Pediatric Crohn’s Guidebook and the recruitment committee for the Rome Foundation’s GastroPsych organization.

Stephanie lives with Crohn’s disease and a permanent ileostomy and is also a cancer survivor. I asked her to help us better understand PTSD and PTS as they relate to having a chronic illness like IBD. She defines PTSD and why it can happen with IBD, what some of the signs and symptoms might look like, and what patients can do to address their mental health.

Episode transcript and more information at: https://bit.ly/AIBD145

Find Stephanie Brenner, LCSW, MSW at:

• Web: https://chronicillnesspsychotherapy.com/
• Facebook: https://www.facebook.com/chronicillnesspsych

Concepts discussed:

• An Overview of Rectovaginal Fistula: https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356
• An Overview of Anal or Rectal Abscess: https://www.verywellhealth.com/perirectal-abscess-2328821
• Proctectomy Surgery for Inflammatory Bowel Disease: https://www.verywellhealth.com/proctectomy-surgery-for-inflammatory-bowel-disease-4122490
• Sacha McBain, PhD: https://www.linkedin.com/in/sachamcbain/
• What Is Post-Traumatic Stress Disorder (PTSD)?: https://www.verywellhealth.com/what-is-ptsd-5084527
• The Psychology of the Sickbed: https://www.amazon.com/Psychology-Sickbed-J-H-Berg/dp/B004NMY0RK
• Taft TH, Quinton S, Jedel S, Simons M, Mutlu EA, Hanauer SB. Posttraumatic Stress in Patients With Inflammatory Bowel Disease: Prevalence and Relationships to Patient-Reported Outcomes. Inflamm Bowel Dis. 2022;28(5):710-719. doi:10.1093/ibd/izab152
• What Is EMDR Therapy?: https://www.verywellhealth.com/emdr-therapy-5212839
• Understanding Diaphragmatic Breathing: https://www.verywellhealth.com/diaphragmatic-breathing-how-to-benefits-and-exercises-5219974
• All About Grounding: Techniques to Connect to Nature: https://www.verywellhealth.com/grounding-7494652
• Self-Report PTSD Checklist for DSM-5 (PCL-5): https://www.ptsd.va.gov/professional/assessment/documents/PCL5_Standard_form.pdf (other checklists https://www.ptsd.va.gov/professional/assessment/adult-sr/ptsd-checklist.asp#obtain)
• Rome Foundation: https://romegipsych.org/
• Samantha Irby: https://www.samanthairby.com/
• Tig Notoro: https://tignation.com/
• Hannah Gatsby: https://hannahgadsby.com.au/
• Cameron Esposito: https://www.instagram.com/cameronesposito/

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• LinkedIn: @macooney
• Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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As an assistant professor of medicine in the Division of Gastroenterology at the University of Miami Miller School of Medicine, and the Director of Translational Studies for the Crohn’s and Colitis Center, Dr. Damas sheds light on the misconception that IBD only affects certain ethnicities. Her extensive research explores the connection between of environment and genetics in the development of IBD, with a special focus on its impact on immigrants from Latin America. Dr. Damas shares insights into the challenges of studying the role of diet in IBD, revealing key findings from her research and explaining how her work is reshaping our understanding of these diseases.

Find Oriana Damas, MD at:

• University of Miami: Oriana Mazorra Damas, M.D.
• Twitter: @oridamas

Dr Damas' Research:

• The Current State of Care for Black and Hispanic Inflammatory Bowel Disease Patients
• Social barriers influence inflammatory bowel disease (IBD) outcomes and disproportionally affect Hispanics and non-Hispanic Blacks with IBD
• Low-Fat, High-Fiber Diet Reduces Markers of Inflammation and Dysbiosis and Improves Quality of Life in Patients With Ulcerative Colitis
• Ethnicity influences risk of inflammatory bowel disease (IBD)-associated colon cancer: a cross-sectional analysis of dysplasia prevalence and risk factors in Hispanics and non-Hispanic whites with IBD

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD143

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What is it like to be a teen living with Crohn’s disease? If you’re like Josef Miller, you channel the challenges of the diagnosis and management of IBD into action. Josef has written a book about his experiences, entitled "The Purple Rose," and created an initiative called "Positivity Beats IBD," which creates inspirational cards for people living with IBD and other conditions. Learn about Josef's journey with Crohn's, his multicultural background, and how and why he decided to write a book.

Find Josef Miller at:

• Instagram — Positivity Beats IBD: @positivity_beats_ibd
• Instagram — Josef Miller: @josefjm13
• Book: The Purple Rose
• Book: The Axolotl That Lost Himself
• Connecting to Cure

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD143

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What options are you wiling to try to manage your ulcerative colitis or Crohn’s disease? How about putting someone else’s stool into your own colon? Fecal microbiota transplants (FMTs) — using stool from a donor to repopulate bacteria in the colon — are being studied for use in treating inflammatory bowel disease (IBD). Filmmaker Saffron Cassady decided to try do-it-yourself FMT to treat her ulcerative colitis, using stool from the healthiest person she could find: her husband. The journey is captured in her film, Designer $hit, which explores both the science and potential behind FMT. Learn about why she decided to take a chance on FMT, how it has impacted her life, and where you can see Designer $hit. Learn where you can attend a screening: https://designershit.eventive.org/schedule Episode transcript and more information at: https://bit.ly/AIBD142 Find Saffron Cassaday and Designer $hit at: * Web: Designer $hit * Twitter: @Designer_Shit_ * TikTok: @designershitdocumentary * YouTube: Designer $hit * Facebook: @Designer Shit * Instagram: @designershtdocumentary

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * LinkedIn: @macooney * Theme music, IBD Dance Party, is from ©Cooney Studio.

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What do all the new oral drugs available for treating IBD have to do with military service? Being diagnosed with IBD might mean leaving the military for some service members. Part of the reason is that it’s not possible to be deployed while receiving a drug that’s an injection or an infusion. But when a medication works well and happens to be in pill form: that’s a game-changer. Dr Anish Patel, the Medical Director of the Inflammatory Bowel Disease Center at Brooke Army Medical Center gives an update on how IBD is treated in the military, what he sees on the horizon for IBD, and his best advice for every patient living with a chronic illness. Episode transcript and more information at: https://bit.ly/AIBD141 Find Anish Patel, DO, LTC, FACG, FAGA at: * Facebook: https://www.facebook.com/anish.patel.31392/ * Facebook: https://www.facebook.com/profile.php?id=100089635157883 * Instagram: https://www.instagram.com/anishpa81/ * Twitter: https://twitter.com/FocusGI2022 * LinkedIn: https://www.linkedin.com/in/anishpa-armyibd/ * Web: https://www.focusgi.org/

Resources:

• Crohn’s and Colitis Foundation, Veterans with IBD: https://www.crohnscolitisfoundation.org/veterans
• Facebook Support Group for Veterans with IBD: https://www.facebook.com/groups/525843515658644
• VA Podcast Network: https://news.va.gov/va-podcast-network/
• My HealtheVet: https://www.myhealth.va.gov/mhv-portal-web/home
• Veterans Crisis Line: https://www.veteranscrisisline.net/

Research:

• Fragmented care and IBD: Outcomes in U.S. veterans: https://ihpi.umich.edu/news/fragmented-care-and-ibd-outcomes-us-veterans
• Irritable Bowel Syndrome in U.S. Veterans: https://www.verywellhealth.com/ibs-in-veterans-1944720
• Kent KG. Prevalence of gastrointestinal disease in US Military Veterans under outpatient care at the Veterans Health Administration. SAGE Open Med. 2021;9:20503121211049112. doi:10.1177/20503121211049112 https://pubmed.ncbi.nlm.nih.gov/34646564/
• Bookwalter DB, Roenfeldt KA, LeardMann CA, Kong SY, Riddle MS, Rull RP. Posttraumatic stress disorder and risk of selected autoimmune diseases among US military personnel. BMC Psychiatry. 2020;20(1):23. doi:10.1186/s12888-020-2432-9 https://pubmed.ncbi.nlm.nih.gov/31941473/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutIBD/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credits: Sound engineering courtesy Mac Cooney:

• Facebook: https://www.facebook.com/maccooneycomposer
• Instagram: https://www.instagram.com/maccooneycomposer/
• "IBD Dance Party" Single: https://maccooney.bandcamp.com/track/ibd-dance-party-single
• ©Cooney Studio: http://cooneystudio.com/

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Being diagnosed with a chronic condition is a major adjustment. Digestive conditions like IBD (Crohn’s disease and ulcerative colitis) wind up affecting every part of our lives. Learning to accept the ways in which the disease affects life can be helpful. But it’s important to make the distinction between acceptance and complacency. Maalvika Bhuvansunder, a young adult patient living with Crohn’s disease, uses her experiences to help bring the concept of acceptance into focus for other people who are living with a chronic condition. Concepts discussed on this episode: * What Is a Bowel Obstruction?: https://www.verywellhealth.com/what-is-a-bowel-obstruction-1943010 * Bowel Obstruction Surgery: Everything You Need to Know: https://www.verywellhealth.com/surgery-for-a-bowel-obstruction-796815 * 6 Types of Colectomy Surgery: https://www.verywellhealth.com/types-of-colectomy-surgery-1943059 * Parasites - Amebiasis - Entamoeba histolytica Infection: https://www.cdc.gov/parasites/amebiasis/general-info.html * Gargallo-Puyuelo CJ, Alfambra E, García-Erce JA, Gomollon F. Iron Treatment May Be Difficult in Inflammatory Diseases: Inflammatory Bowel Disease as a Paradigm. Nutrients. 2018;10(12):1959. Published 2018 Dec 11. doi:10.3390/nu10121959 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6316243/

Episode transcript and more information at: https://bit.ly/AIBD140 Find Maalvika Bhuvansunder at: * Adventure and Travel with Chronic Illness: https://youtu.be/yw1KNhSyVLg * LinkedIn: http://linkedin.com/in/maalvika-bhuvansunder * Instagram: https://www.instagram.com/maalvika_bhuvansunder * Web: https://www.ccyanetwork.org/fellow-projects

Find Amber J Tresca: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutIBD/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credits: * Sound engineering courtesy Mac Cooney: https://www.facebook.com/maccooneycomposer * "IBD Dance Party" Single: https://maccooney.bandcamp.com/track/ibd-dance-party-single * ©Cooney Studio: http://cooneystudio.com/

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Menopause is a topic that's not well understood in general and there's even less information when it comes to menopause and inflammatory bowel disease (IBD, Crohn’s disease and ulcerative colitis). October is World menopause Awareness Month. World Menopause Day is on October 18 every year. The purpose of the day is to raise awareness of menopause and the support options available for improving health and well being. Learn more about how IBD may affect perimenopause and menopause, as well as the reverse. Concepts discussed on this episode: * World Menopause Day: https://www.imsociety.org/education/world-menopause-day/ * The North American Menopause Society: https://www.menopause.org/home * Menopause and IBD: What a Gastroenterologist Wants You to Know: https://gastrogirl.com/menopause-and-ibd/ * Living Well with IBD: Women's Health and IBD: https://www.youtube.com/watch?v=sWcQsiQDvKk * Can You Treat Menopause Symptoms With Over-the-Counter Medications: https://www.goodrx.com/conditions/menopause/over-the-counter-relief-options * Maya Minding Menopause: A 4-Part Series: https://mayafellernutrition.com/maya-minding-menopause/

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * LinkedIn: @macooney * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD139 Sources:

1. Rolston VS, Boroujerdi L, Long MD, et al. The influence of hormonal fluctuation on inflammatory bowel disease symptom severity—a cross-sectional cohort study. Inflamm Bowel Dis. 2018;24:387–393. doi:10.1093/ibd/izx004

2. Lichtarowicz A, Norman C, Calcraft B, Morris JS, Rhodes J, Mayberry J. A study of the menopause, smoking, and contraception in women with Crohn's disease. Quarterly Journal of Medicine. 1989;72:623–631.

3. Kane SV, Reddy D. Hormonal replacement therapy after menopause is protective of disease activity in women with inflammatory bowel disease. Am J Gastroenterol. 2008;103:1193–1196. doi:10.1111/j.1572-0241.2007.01700.x

4. “The 2022 Hormone Therapy Position Statement of The North American Menopause Society” Advisory Panel. The 2022 hormone therapy position statement of The North American Menopause Society. Menopause. 2022;29(7):767-794. doi:10.1097/GME.0000000000002028

5. Lungaro L, Costanzini A, Manza F, et al. Impact of Female Gender in Inflammatory Bowel Diseases: A Narrative Review. J Pers Med. 2023;13(2):165. Published 2023 Jan 17. doi:10.3390/jpm13020165

6. Lewandowski K, Kaniewska M, Więcek M, et al. Risk Factors for Osteoporosis among Patients with Inflammatory Bowel Disease-Do We Already Know Everything?. Nutrients. 2023;15(5):1151. Published 2023 Feb 24. doi:10.3390/nu15051151

7. Schüle S, Rossel JB, Frey D, et al. Widely differing screening and treatment practice for osteoporosis in patients with inflammatory bowel diseases in the Swiss IBD cohort study. Medicine (Baltimore). 2017;96(22):e6788. doi:10.1097/MD.0000000000006788

8. Hidalgo DF, Boonpheng B, Phemister J, Hidalgo J, Young M. Inflammatory bowel disease and risk of osteoporotic fractures: A meta-analysis. Cureus. 2019;11:e5810. doi:10.7759/cureus.5810

9. Palomba S, Manguso F, Orio F Jr, et al. Effectiveness of risedronate in osteoporotic postmenopausal women with inflammatory bowel disease: a prospective, parallel, open-label, two-year extension study. Menopause. 2008;15(4 Pt 1):730-736. doi:10.1097/gme.0b013e318159f190

Additional Sources:

• Gold EB. The timing of the age at which natural menopause occurs. Obstet Gynecol Clin North Am. 2011;38:425–440. doi:10.1016/j.ogc.2011.05.002
• Sheth T, Pitchumoni CS, Das KM. Musculoskeletal manifestations in inflammatory bowel disease: a revisit in search of immunopathophysiological mechanisms. J Clin Gastroenterol. 2014;48:308–317. doi:10.1097/MCG.0000000000000067
• Harbord M, Annese V, Vavricka SR, et al. The first European evidence-based consensus on extra-intestinal manifestations in inflammatory bowel disease. J Crohns Colitis. 2016;10:239–254. doi:10.1093/ecco-jcc/jjv213

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Colon cancer is being diagnosed more frequently in younger people. It’s now recommended that most people get a screening colonoscopy at the age of 45. For people who have a family history of colon cancer, the first screening should be when they are 10 years younger than the family member was when they were diagnosed. My guest is my husband, Michael Tresca, who recently had a screening colonoscopy after turning 50. He details his experiences in using a newer prep and how he managed the process. If there is a person in your life that is due for their screening, I hope you’ll share this with them. And if you’re someone who is involved in administering screening colonoscopies, I hope you’ll listen to get an unfiltered perspective. Find Michael Tresca at World of Welstar: * Twitter: @WorldofWelstar * Instagram: @world_of_welstar * Facebook: @worldofwelstar * Patreon: https://www.patreon.com/talien

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * LinkedIn: @macooney * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD138 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Diet does matter in inflammatory bowel disease (IBD). Not only in how it affects the digestive system, but also in overall health. Adults with IBD have greater incidences of heart disease, lung disease, cancer, diabetes, arthritis, kidney disease, liver disease, and ulcers than do people without IBD. For those reasons and more: thinking about diet and how it affects all these other body systems, as well as the IBD, is important. To discuss how diet relates to IBD, Amber talks to Clemmie Oliver, IBD Specialist Registered Associate Nutritionist and Nutritional Therapist (MSc, ANutr, Dip ION, mBANT, CNHC). Clemmie shares her personal journey of living with ulcerative colitis from the age of 9, undergoing surgery, and ultimately receiving a j-pouch. She covers the impact of her condition on her family, particularly her parents and siblings. Clemmie also emphasizes the importance of nutrition in maintaining health and how dietary choices can influence j-pouch function. She provides practical advice for navigating social situations, such as parties and work dinners, where dietary restrictions may apply. She encourages open communication with healthcare professionals and offers thoughts on adapting food textures to better suit those with stomas or internal pouches. Find Clemmie Oliver and the Lifestyle Medicine Clinic Ltd at: * Facebook: @nalmclinic * Instagram: @clemmieolivernutrition * Web: nalmclinic.com

Find Amber J Tresca at: * AboutIBD.com: About IBD * Verywell: Verywell Health * Facebook: @aboutIBD * Twitter: @aboutIBD * Pinterest: @aboutibd * Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at: * Facebook: @maccooneycomposer * Instagram: @maccooneycomposer * Web: Cooney Studio * LinkedIn: @macooney * Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD137 These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds.

One of the barriers to addressing disparities is money. It's an unfortunate fact that the healthcare system in the United States is intertwined with money. In some cases, access to care and other equity issues might be solved by putting some funding towards the problems. That's why I asked my guests a really broad question: If you received grant money, where would you allocate it in order to address disparities?

You'll hear from Dr Aline Charabaty, Melodie Narain-Blackwell, Dr Cedric Pulliam, Dr Fasika Shimeles Teferra, and Brooke Abbott to find out what this panel says about where we should be focusing our efforts in combating healthcare disparities in the IBD space.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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Healthcare is political. That's why it's important to push legislators to ensure care is available and accessible to all patients, regardless of their socioeconomic status. Brooke Abbott, of the Crazy Creole Mommy Chronicles and co-founder of IBDMoms helps illustrate the aspects of public policy that are important in achieving equity in healthcare. In this discussion you'll learn how lack of access to educational opportunities affects the healthcare space, how some provisions in the Affordable Care Act help reduce disparities, and why access to technology is an important part of healthcare.

Find Brooke Abbott on her blog, Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds.

IBD is still considered rare in some parts of the world, but incidence is increasing. Fasika Shimeles Teferra, MD of Ethiopia describes her journey to a diagnosis of Crohn’s disease. Being a medical doctor, she has been able to make connections in order to help other IBD patients in her country. Patients face stigma, less than optimal care, and a lack of educational resources for themselves and their friends and family members.

Dr Teferra was helping patients as best she could but discovered she needed a bigger platform. She founded a nonprofit, Crohn’s and Colitis Ethiopia, in order to better support Ethiopian patients with IBD.

Find Dr Teferra on LinkedIn and Twitter and Crohn’s and Colitis Ethiopia on Facebook and their web site.

More about Dr Teferra and IBD in Ethiopia:

• Interview with Dr Teferra on Lights, Camera, Crohn's
• Inflammatory bowel disease: an emergent disease among Ethiopian Jews migrating to Israel
• Inflammatory bowel disease in Africa: what is the current state of knowledge?

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds.

What is it like to not have anyone on your medical team that looks like you or understands your concerns? The diversity of the human experience is often not reflected in the healthcare system. In fact, there's little research into some areas of IBD, including the experience of LGBTQIA+ patients.

Dr Cedric Pulliam, Senior Public Health Advisor at the Centers for Disease Control and Prevention, had a long journey to a diagnosis of Crohn's disease, punctuated by less than helpful advice from specialists. His experiences as a public health advocate, a patient, and a gay male have brought him to be an open advocate for those in the LGBTQ community. Dr Pulliam has advice on how the IBD community can learn from other disease states in how to truly meet the needs of patients.

Find Dr Pulliam on LinkedIn and Twitter.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds.

Nutrition is a major component of managing digestive disease. Yet people living with Crohn's disease, ulcerative colitis, or indeterminate colitis may not be offered access to help managing their diet.

Dr Selvi Vasudevan, founder of Dr Selvi's Keys to Ease Crohn's, discusses her Crohn's disease journey and how it led her to pursue the role diet and nutrition play in wellness as well as the cultural influence on our food choices. A child of immigrants from southern India to the United States, she is discovering how best to integrate family life, her culture, and her needs as a person with IBD.

Find Dr Selvi on Facebook, Instagram, Twitter, and on DrSelvi.com.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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Inflammatory bowel disease (IBD) affects people from all ethnic and cultural groups. In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds.

Why do women of color encounter so many barriers when accessing care? Where are the spaces for black and brown patients to share their knowledge, experiences, and support around Crohn's disease, ulcerative colitis, and other immune-mediated and autoimmune conditions?

Melodie Narain-Blackwell, founder of Color of Crohn's and Chronic Illness, discusses her Crohn's disease journey and how it led her to become a voice for the IBD community. She tells us why outreach to minority groups sometimes fails, how she approaches patient education, her ideas on giving patients improved access to care, and how motherhood affects her disease journey.

Find Color of Crohn's and Chronic Illness at COCCI.org, Facebook, Twitter, and Instagram.

Find Melodie Narain-Blackwell at Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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In this limited series, we'll explore how inequalities in the healthcare system affect people from diverse backgrounds who live with IBD.

Why is there a lack of people of diverse backgrounds who live with Crohn's disease or ulcerative colitis represented in clinical trials? Why are there so many barriers for people of color in accessing IBD care?

Dr Aline Charabaty, Director of the IBD Center at Johns Hopkins Sibley Memorial Hospital and founder of Monday Night IBD on Twitter discusses the scope of inequalities in research and access to care in IBD. What's more: she offers solutions that can be used to address disparities.

Find Aline Charabaty, MD on Facebook, Twitter, Instagram, and at Monday Night IBD.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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Pregnancy while living with inflammatory bowel disease (IBD) feels scary. But thanks to the groundbreaking Pregnancy Inflammatory bowel disease And Neonatal Outcomes (PIANO) study, there is now so much more data and information to help moms and their doctors make decisions. Dr Mahadevan began the PIANO registry in 2007, which followed women and their babies through pregnancy and after. What was learned from this registry was how IBD medications, and especially biologics, affected pregnancy, birth, and infants. Learn how Dr Mahadevan has grown PIANO over the years, the most important findings so far, and how pregnant women can join the study and help the next generation of moms with IBD and their babies.

Find the PIANO Study at:

• Twitter: @PIANOIBD
• Web: PIANOStudy.org

Find Uma Mahadevan, MD at:

• Twitter: @UmaMahadevanIBD
• LinkedIn: @uma-mahadevan-ibd
• Web: University of California San Francisco

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• LinkedIn: @macooney
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD136

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Desiree Schmidt, a 500-hour yoga instructor and owner of a personal training business, shares her passion for helping people with chronic illnesses, which is inspired by her own experience with Crohn's disease. She discusses how yoga has been key in her journey, both physically and mentally.

Amber and Desiree discuss the benefits of different yoga forms and how to choose the right practice based on whether one is in a flare-up or in remission. Desiree points out how it is important to modify poses when living with a health condition, including IBD, to ensure comfort and safety during classes. She offers insights into providing options for different needs, making the yoga accessible for everyone.

Gain valuable insights into the world of yoga, its benefits for chronic illness, and how to embark on your own yoga practice with confidence and guidance.

Find Desiree (Schmidt) VanDaalwyk, NASM-CPT, FNS at:

• Facebook: @desiree.schmidt.566
• LinkedIn: @Desiree VanDaalwyk
• Instagram: @desireevandaalwyk
• Radect Health: Desiree Schmidt

Find Dutchmen Kettlebells at:

• Facebook: @Dutchmenkettlebells
• Instagram: @dutchmenkettlebells
• Web: https://www.dutchmenkettlebells.com/

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD135

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Brad Watson-Davelaar, founder of Gaming for Guts, shares his experiences in living with Crohn’s disease and how he found support and community through his IBD journey. He talks about his ostomy surgery and how for him, it is a beginning rather than an end.

Brad describes the upcoming fundraising event sponsored by Gaming for Guts to celebrate World IBD Day on May 19th. It will feature Canadian-themed activities in support of Crohn's and Colitis Canada. The IBD and gaming communities are encouraged to get involved with the fun. Brad also shares his thoughts on how the gaming community helps people with IBD connect to form meaningful relationships.

Find Brad Watson-Davelaar at:

• Facebook: @bwdphoto
• Facebook: @crohnsawarenessproject
• Twitter: @bwdphotocanada
• Instagram: @bwdphoto

Find Gaming4Guts at:

• Facebook: @gaming4guts
• Twitter: @gaming4guts
• Instagram: @gaming4guts
• Web: www.gaming4guts.com
• Discord: https://discord.gg/BpXcmz7
• About IBD Episode 83: The Streamers from Gaming4Guts

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD134

These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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When is the last time you pooped your pants? Amber speaks with April Michelle Harris, who lives with ulcerative colitis, a type of inflammatory bowel disease (IBD), for over 13 years. April shares her journey, from her initial diagnosis to her struggles with depression and anxiety, and how she has managed to build a fulfilling life despite the many challenges that come with living with a chronic illness.

We also dive into April's new book "I Pooped My Pants", where she shares her story and those of 20 other IBD warriors who have bravely shared their experiences with living with the disease. April's book provides a refreshing and honest perspective on what it's like to live with IBD, and it's a must-read for anyone who wants to learn more about the disease and how it affects people on a daily basis.

Tune in to hear April's inspiring story and learn more about living with a chronic illness, and how you can build a fulfilling life despite the challenges that may come your way.

Find April Michelle Harris at:

• Web: "I Pooped My Pants"
• Web: VirtuallyAprilMichelle
• Instagram: @VirtuallyAprilMichelle
• Instagram: @IPoopedMyPantsBook
• Facebook: Virtually April Michelle
• Book: "I Pooped My Pants" at Amazon

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD133

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Going to a movie can be a frustrating experience for anyone with a digestive or urinary condition. Not only are the bathrooms sometimes far from the theaters, it’s difficult to know when to duck out if nature calls. Enter RunPee. The RunPee app is designed to help moviegoers know when the best time is to use the restroom (a peetime) during a movie without missing any important scenes. The creator, Dan Gardner, discusses how he and his team choose the best times to use the restroom while still ensuring that users do not miss any critical moments in the film. Additionally, Gardner talks about the other features of the app, such as movie ratings and reviews, and the importance of understanding the needs of different demographic groups.

Find RunPee at:

• Web: RunPee.com
• Twitter: @RunPee
• LinkedIn: @runpee
• RunPee Android: Android App Store
• RunPee iPhone: iPhone App Store

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD131

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What happens when your professional life and your IBD overlap? Sari Grossman is a research scientist, Crohn's disease patient, and advocate for patients with chronic illnesses. She shares her experience with Crohn's disease, including her family history of IBD, diagnosis at a young age, her unusual symptoms, and the impact it had on her life. She speaks candidly about the physical and emotional challenges of living with a chronic illness, and how she has learned to cope with the ups and downs of her condition.

Find Sari Grossman at:

• Twitter: @saribari99
• Instagram: @saribari99
• LinkedIn: @Sari Grossman

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD131

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Is it possible for kids to look at their touchpoints with medical care as empowering experiences? Adam Finkelstein, a medical student and author, shared his experiences of living with IBD from a young age, and how he coped with surgeries and doctor's appointments as a child. Adam provides tips for helping kids develop positive associations with going to the doctor, which include building trust with healthcare professionals, being honest about what to expect during appointments, and creating a comfortable environment for kids. Adam's book, "Up and Adam," is a resource for children with IBD and their families.

Contact Adam Finkelstein at adamibdstory@gmail.com.

Get "Up and Adam: A Patient's Experience on Winning with IBD" at Barnes and Noble.

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD130

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Caitlin McGinnis, LCSW was diagnosed with ulcerative colitis at the age of 22 and had her entire colon removed. This experience prompted her to become a social worker and specialize in providing mental health support for patients with various digestive health issues. Through her own experiences and connecting with support groups, Caitlin has learned the importance of creating communities, bringing awareness, and being a source of support for those going through similar struggles. She strives to provide her patients with the support she did not have when she was diagnosed.

Find Caitlin McGinnis, LCSW on:

• Psychology Today
• Alma

Concepts discussed on this episode:

• United Ostomy Associations of America Support Group Finder
• Crohn’s and Colitis Foundation Support Groups

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD129

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Are we getting close to predicting how Crohn's disease might change over time? Dr. Corey Siegel, co-director of the Inflammatory Bowel Disease Center at the Dartmouth Hitchcock Medical Center in Lebanon, New Hampshire, and Jessica Caron, a patient key opinion leader who lives with Crohn's, discuss a prognostic tool called CDPATH. This tool may help patient and healthcare providers understand how the disease may change over the next few years, and better inform a discussion of treatment options.

Find Corey Siegel, MD on:

• Twitter: @DrCoreySiegel

Find Jessica Caron at:

• Instagram: @chronicallyjess_
• Twitter: @ChronicallyJess
• Facebook: @ChronicallyJess
• Web: Chronically Jess
• LinkedIn: @jessica-caron

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @maccooneycomposer
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https://bit.ly/AIBD128

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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For years we were told that diet doesn’t matter in inflammatory bowel disease (IBD). We know now that diet is important in IBD. What’s still not clear is how we should be thinking about it in terms of management. Helena Murphy is a photographer, yoga teacher, and Crohn’s disease patient who brought her skills and experience to writing a book entitled, "The Plant-Based Crohn’s and Colitis Cookbook." She shares her secret to publishing her book, as well as how her life has changed since being diagnosed with Crohn’s disease.

Find Helena Murphy at:

• Instagram: @helenarose_photography
• Web: Helena Rose Murphy.net
• Buy: The Plant-Based Crohn’s and Colitis Cookbook

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @michaelandrewcooney
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https:/bit.ly/AIBD127

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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Caring for pelvic health is important for people of all genders who live with an inflammatory bowel disease (Crohn’s disease or ulcerative colitis). Dr. Amanda Olson, who holds a doctorate in physical therapy and is the President and Chief Clinical Officer for Intimate Rose, has dedicated her professional life to helping people improve their pelvic health. Learn more about pelvic therapy and how she has developed resources and tools to help people living with all types of conditions.

Find Amanda Olson, DPT, PRPC at:

• Instagram: @intimaterose
• Twitter: @IntimateRose
• Web: Intimate Rose
• Buy: Restoring The Pelvic Floor: How Kegel Exercises, Vaginal Training, And Relaxation, Solve Incontinence, Constipation, And Heal Pelvic Pain To Avoid Surgery

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @michaelandrewcooney
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https:/bit.ly/AIBD126

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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What did you read over the past year? If you made a reading goal: did you hit it? The books I read this year ranged from self-help to true crime to science fiction. Hear more about some of the books I enjoyed in 2022 (and in the year after I was diagnosed with ulcerative colitis) and if you’ll want to pick them up for yourself.

• Creativity: A Short and Cheerful Guide
• The Comfort Book
• Born a Crime: Stories from a South African Childhood
• It’s Trevor Noah: Born a Crime: Stories from a South African Childhood (Adapted for Young Readers)
• The House in the Cerulean Sea
• Killers of the Flower Moon: The Osage Murders and the Birth of the FBI
• The Case of the Murderous Dr. Cream: The Hunt for a Victorian Era Serial Killer
• Dune
• The Scarlet Letter
• Slapstick or Lonesome No More!: A Novel
• Hocus Pocus
• Turtles All the Way Down
• Project Hail Mary: A Novel
• Artemis: A Novel
• Feed

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @michaelandrewcooney
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https:/bit.ly/AIBD125

These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

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For some people living with Crohn’s disease or ulcerative colitis, the disease puts roadblocks in the way when it comes to going to school, having a career, and participating in sports. For Lauren Thibodeau, a diagnosis of ulcerative colitis led to a complication of medical catatonia, which derailed her life and her career as a college golfer. However, with her family, her medical team, and her teammates around her, she made her way back to the golf course and in fact, wound up playing better than ever. Lauren shares what kept her motivated during the long and difficult recovery and how it changed her perspective on her golf game as well as her outlook on life.

Find Lauren Thibodeau at:

• Instagram: @lauren_t_99
• Twitter: @LTgolf247
• LinkedIn: Lauren Thibodeau
• Awards: Lauren Thibodeau Named Class of 2022 Honda Inspiration Award Winner, Thibodeau Wins Kim Moore Spirit Award

Find Amber J Tresca at:

• AboutIBD.com: About IBD
• Verywell: Verywell Health
• Facebook: @aboutIBD
• Twitter: @aboutIBD
• Pinterest: @aboutibd
• Instagram: @about_IBD

Find Mac Cooney (mix, sound design, and theme music) at:

• Facebook: @michaelandrewcooney
• Instagram: @maccooneycomposer
• Web: Cooney Studio
• Theme music, IBD Dance Party, is from ©Cooney Studio.

Episode transcript and more information at: https:/bit.ly/AIBD124

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Does living with Crohn’s disease or ulcerative colitis make a person more resilient? And is resilience something that should be a part of management plan for people with inflammatory bowel disease (IBD) or other chronic illnesses? Mara Shapiro, healthcare journalist and Crohn’s disease patient, has had no other choice but to find a way towards resilience in her life, having lived through grief and loss early in life, followed by the diagnosis of several chronic illnesses. She provides deep insight on coping mechanisms and resilience, including the various ways we can look at these ideas to fit our own needs.

Find Mara Shapiro (and Morty) at:

• Instagram: https://www.instagram.com/marajshapiro/ and https://www.instagram.com/morty.the.red.corgi/
• Twitter: https://twitter.com/marajshapiro
• Trellis Health: https://www.your.trellushealth.com/post/mara-s-journey-part-2
• Crohn’s and Colitis Young Adult Network: https://www.ccyanetwork.org/news/w04wrzo2fa3a04qc7vg1667k12zxyy
• Blogspot: https://futuremdwithibd.blogspot.com/2020/12/a-reflection-on-2020.html

Find Amber J Tresca at:

• AboutIBD.com: http://aboutibd.com/
• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Facebook: https://www.facebook.com/aboutIBD
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney, https://www.instagram.com/maccooneycomposer/
• Theme music, IBD Dance Party, is from ©Cooney Studio: https://maccooney.bandcamp.com/track/ibd-dance-party-single

Episode transcript and more information at: https:/bit.ly/AIBD123

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When it comes to people with Crohn’s disease or ulcerative colitis serving in the military, the usual policy is that the two things are incompatible. The reason being that people living with an inflammatory bowel disease (IBD) need care and treatments that are incompatible with being deployed. However, sometimes there are other considerations, as Dr Daniel Rausa describes. Dr Rausa was diagnosed with Crohn’s disease while serving in the Navy, and he has advice for people who live with an IBD and want to serve or who want to pursue a medical career. He also describes why it’s so important to follow up and stay on top of transition of care when leaving military service.

Find Daniel Rausa, DO at:

• Twitter: https://twitter.com/danielrausado

Find Amber J Tresca at:

• AboutIBD.com: http://aboutibd.com/
• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Facebook: https://www.facebook.com/aboutIBD
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney
• Theme music, IBD Dance Party, is from ©Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single

Episode transcript and more information at: https:/bit.ly/AIBD122

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When it comes to people with Crohn’s disease or ulcerative colitis serving in the military, the usual policy is that the two things are incompatible. The reason being that people living with an inflammatory bowel disease (IBD) need care and treatments that are incompatible with being deployed. However, sometimes there are other considerations, as Dr Daniel Rausa describes. Dr Rausa was diagnosed with Crohn’s disease while serving in the Navy, and he has advice for people who live with an IBD and want to serve or who want to pursue a medical career. He also describes why it’s so important to follow up and stay on top of transition of care when leaving military service.

Find Daniel Rausa, DO at:

• Twitter: https://twitter.com/danielrausado

Find Amber J Tresca at:

• AboutIBD.com: http://aboutibd.com/
• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Facebook: https://www.facebook.com/aboutIBD
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney
• Theme music, IBD Dance Party, is from ©Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single

Episode transcript and more information at: https:/bit.ly/AIBD122

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What if we knew which patients would have severe Crohn’s disease or ulcerative colitis? And which wouldn’t? How about if we could tell which drug would work best in which patient? Knowing these things would change how inflammatory bowel disease (IBD) is diagnosed and treated. Plus, more importantly: it would improve lives. Dr Andres Hurtado-Lorenzo, Vice President of Translational research and IBD Ventures at the Crohn's and Colitis Foundation explains biomarkers and how they may play into the future of how IBD is diagnosed, managed, and treated.

Resources:

• Crohn’s & Colitis Foundation:https://www.crohnscolitisfoundation.org/
• IBD Plexus:https://www.crohnscolitisfoundation.org/research/current-research-initiatives/ibd-plexus/about
• RISK Study:https://www.crohnscolitisfoundation.org/research/current-research-initiatives/pediatric-risk-stratification
• IBD Ventures:https://www.crohnscolitisfoundation.org/research/grants-fellowships/entrepreneurial-investing/portfolio
• Olink: https://www.olink.com
• Foundation for the National Institutes of Health: https://www.fnih.org
• Genedata: https://www.com
• Glycominds: https://www.glycominds.com/blood-tests-1
• PredictImmune:https://www.predictimmune.com/

Research:

• Honig G, Heller C, Hurtado-Lorenzo A. Defining the Path Forward for Biomarkers to Address Unmet Needs in Inflammatory Bowel Diseases. Inflamm Bowel Dis. 2020;26(10):1451-1462. doi:10.1093/ibd/izaa210. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7500521/pdf/izaa210.pdf
• Honig G, Larkin PB, Heller C, Hurtado-Lorenzo A. Research-Based Product Innovation to Address Critical Unmet Needs of Patients with Inflammatory Bowel Diseases. Inflamm Bowel Dis. 2021;27(Suppl 2):S1-S16. doi:10.1093/ibd/izab230. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8922161/pdf/izab230.pdf
• Kugathasan S, Denson LA, Walters TD, et al. Prediction of complicated disease course for children newly diagnosed with Crohn's disease: a multicentre inception cohort study. Lancet. 2017;389(10080):1710-1718. doi:10.1016/S0140-6736(17)30317-3. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5719489/pdf/nihms923305.pdf
• Biasci D, Lee JC, Noor NM, et al. A blood-based prognostic biomarker in IBD. Gut. 2019;68(8):1386-1395. doi:10.1136/gutjnl-2019-318343. https://www.predictimmune.com/wp-content/uploads/2020/09/Biasci-et-al-A-blood-based-prognostic-biomarker-in-IBD-Gut-2019.pdf
• de Bruyn M, Ringold R, Martens E, et al. The Ulcerative Colitis Response Index for Detection of Mucosal Healing in Patients Treated With Anti-tumour Necrosis Factor. J Crohns Colitis. 2020;14(2):176-184. doi:10.1093/ecco-jcc/jjz125. https://doi.org/10.1093/ecco-jcc/jjz125

Find Amber J Tresca at:

• AboutIBD.com: http://aboutibd.com/
• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Facebook: https://www.facebook.com/aboutIBD
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney
• Theme music, IBD Dance Party, is from ©Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single

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There aren’t as many men who are vocal in the inflammatory bowel disease (IBD) space as there are women. Crohn’s disease and ulcerative colitis affect men as often as they do women, but fewer men seem comfortable being public about their disease. That’s why Carlos “CJ" Cabrera, who also goes by CJ Papuro, entered the IBD community after his diagnosis of Crohn’s. He gives an overview of how difficult it was to be diagnosed as a US veteran using the Veterans Health Administration, his struggles with finding his way with nutrition, the ways in which IBD has affected him as a man, and his advice for other men. Concepts discussed on this episode include: * Athletic Greens — AG1: https://athleticgreens.com/ibdpod * Fragmented Care and IBD: Outcomes in U.S. Veterans: https://ihpi.umich.edu/news/fragmented-care-and-ibd-outcomes-us-veterans * The Incidence and Prevalence of Inflammatory Bowel Disease Among U.S. Veterans: A National Cohort Study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3972034/ * Maltodextrin, Modern Stressor of the Intestinal Environment: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6409436/ * How IBD Affects Fertility in Men: https://www.verywellhealth.com/how-ibd-affects-fertility-in-men-4125878 * How to Recognize and Diagnose Crohn’s Disease in Men: https://www.verywellhealth.com/crohns-symptoms-male-5215367 * Arthritis and Inflammatory Bowel Disease: https://www.verywellhealth.com/arthritis-and-inflammatory-bowel-disease-1941772 * Should You Exercise If You Have IBD?: https://www.verywellhealth.com/exercising-with-ibd-4582068

Find CJ Papuro at: Instagram: https://www.instagram.com/papuro Instagram: https://www.instagram.com/papurosmokes Instagram: https://www.instagram.com/chill.ghost YouTube: https://www.youtube.com/c/Papuro Find Amber J Tresca at AboutIBD.com: http://aboutibd.com/ Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Facebook: https://www.facebook.com/aboutIBD Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/ Credits: Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney Theme music, IBD Dance Party, is from Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single Episode transcript and more information at: https:/bit.ly/AIBD120

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Have you ever been out in public and needed a toilet — but there wasn’t one available?

This has happened to everyone who lives with an inflammatory bowel disease (IBD, Crohn’s disease or ulcerative colitis), which is why so many of us have “bathroom accident” stories. Needing to use the bathroom is a basic human need, but it’s treated like an afterthought. That’s where the Restroom Access Act comes into play: a law passed in several states that allows people to request access to a toilet when they live with certain conditions.

There is no such law currently in California. That’s hopefully going to change thanks to the efforts of Ashlyn Saltzburg and Kelly Silk. Ashlyn is a teenager living with IBD and Kelly is her mom. Their effort to get a law passed in California is nothing short of heroic. Learn about how they got started on this journey to have the Restroom Access Act passed in California, and how you can help.

More information and a transcript: https://bit.ly/AIBD119

Concepts discussed on this episode:

• Athletic Greens AG1: https://athleticgreens.com/ibdpod
• How the Restroom Access Act Helps Those With IBD: https://www.verywellhealth.com/the-restroom-access-act-1942432
• California Assembly Bill 1632: https://legiscan.com/CA/bill/AB1632/2021
• Akilah Weber, Assmblymember, District 79: https://a79.asmdc.org/2021-2022-legislation
• Shervin Rabizadeh, MD, MBA: https://bio.cedars-sinai.org/rabizadehsx/index.html

Find Amber J Tresca at:

• AboutIBD.com: http://aboutibd.com/
• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Facebook: https://www.facebook.com/aboutIBD
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney
• Theme music, IBD Dance Party, is from ©Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single

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There are significant unmet needs for IBD patients that include pain control, sleep disturbances, anxiety, and depression. Some patients turn to medical cannabis for these symptoms. But is that a good idea, does it work, and what should patients and their doctors know about medical cannabis? To answer these questions and more, Amber talks to cannabis and IBD expert Dr Jami Kinnucan, who is a Senior Associate Consultant in the Section of Gastroenterology and Hepatology at the Mayo Clinic in Jacksonville, Florida.

Concepts discussed on this episode include:

• Athletic Greens — AG1: https://athleticgreens.com/ibdpod
• The Sherman Prize: https://shermanprize.org/
• Hemp Production and the 2018 Farm Bill: https://www.fda.gov/news-events/congressional-testimony/hemp-production-and-2018-farm-bill-07252019
• Sleep Specialists: Everything You Need to Know: https://www.verywellhealth.com/sleep-specialist-5221561
• What You Should Know About CBD and Methotrexate: https://www.verywellhealth.com/cbd-oil-and-methotrexate-5095473
• Cannabinoids: Benefits, Side Effects, Dosage, and Interactions: https://www.verywellhealth.com/cannabinoids-4847186
• Cannabinoid Hyperemesis Syndrome: https://www.verywellhealth.com/cannabinoid-hyperemesis-syndrome-5072414
• The Rome Criteria for Irritable Bowel Syndrome (IBS): https://www.verywellhealth.com/the-rome-criteria-for-ibs-1941670
• Canna Research Foundation: https://cannaresearchfoundation.org/
• Medical Cannabis: https://www.crohnscolitisfoundation.org/complementary-medicine/medical-cannabis
• Kinnucan J. Use of medical cannabis in patients with inflammatory bowel disease. Gastroenterol Hepatol (N Y). 2018;14:598–601. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6366240/
• Medical Marijuana for IBD: https://www.verywellhealth.com/medical-marijuana-for-ibd-5115675
• How to Talk to Your Doctor About Marijuana: https://www.verywellhealth.com/talking-to-doctor-about-marijuana-use-5113836

Find Jami A. Kinnucan, MD at:

• Mayo Clinic: https://www.mayoclinic.org/biographies/kinnucan-jami-a-m-d/bio-20527092
• Twitter: https://twitter.com/ibdgijami
• Facebook: https://www.facebook.com/ibdgijami

Find Amber J Tresca at:

• AboutIBD.com: http://aboutibd.com
• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Facebook: https://www.facebook.com/aboutIBD
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney
• Theme music, IBD Dance Party, is from Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single

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When you think of Crohn’s disease or ulcerative colitis, you might not think of physical therapy. But physical therapy and pelvic floor therapy can be integral to helping with function, pain, and having better bowel movements. To learn more, I connected with Nancy Cullinane, who is a Board-Certified Women’s Health Clinical Specialist at Overlake Hospital and Clinics Outpatient Rehab in Washington State, and Christine Morgan, who is a Board-Certified Sports Clinical Specialist and the Director of Clinical Education at the Florida Southern College School of Physical Therapy. They describe the ways in which a physical therapist can help with some of the issues that crop up with inflammatory bowel disease (IBD) and how you can find a physical therapist to help you. Concepts discussed on this episode include: Athletic Greens — AG1: https://athleticgreens.com/ibdpod The Sherman Prize: https://shermanprize.org/ Academy of Pelvic Health Physical Therapy: https://aptapelvichealth.org American Physical Therapy Association: https://www.choosept.com/ Herman & Wallace Pelvic Rehabilitation Institute: https://hermanwallace.com/ Social Media: Nancy Cullinane, PT, MHS, DPT, WCS on LinkedIn: https://www.linkedin.com/in/nancy-cullinane-pt-mhs-dpt-wcs-405866b1/ FSC School of Physical Therapy on Instagram: https://www.instagram.com/fsc.dpt/ Overlake Medical Center & Clinics on Facebook: https://www.facebook.com/overlakemedicalcenter Find Amber J Tresca at: AboutIBD.com: http://aboutibd.com/ Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Facebook: https://www.facebook.com/aboutIBD Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/ Credits: Mix and sound design is by Mac Cooney: https://www.facebook.com/michaelandrewcooney Theme music, IBD Dance Party, is from Cooney Studio: https://michaelandrewcooney.bandcamp.com/track/ibd-dance-party-single Episode transcript and more information at: https:/bit.ly/AIBD117

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There are tools available to address the psychosocial impact of inflammatory bowel disease (IBD). Learn what’s available to you from Dr Jessica Naftaly, a GI behavioral health fellow at the University of Michigan and Amy Bugwadia, higher education coordinator for Generation Patient, Teaching Assistant at Stanford University School of Medicine, ulcerative colitis patient, and key opinion leader in the IBD community.

Concepts discussed on this episode include:

• The Rome Foundation Gastropsych Directory
• Psychology Today Find a Therapist
• Diaphragmatic Breathing [Video] With Megan Riehl, Psy.D.
• National Council of College Leaders
• Crohns & Colitis Foundation's Power of Two Program

Find Jessica Naftaly, PhD on Twitter.

Find Amy Bugwadia on Instagram, Facebook, LinkedIn, and at Generation Patient.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https:/bit.ly/AIBD116

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Whether in remission or not, the day-to-day of life with IBD can be challenging. Living with Crohn’s disease or ulcerative colitis, even when feeling well, might mean making lifestyle changes, going to doctor’s appointments, and taking medications. Many people are diagnosed young, at a time when their friends aren’t going through anything similar. To understand how people might deal effectively with these changes, Amber talks with Dr Sandra Quezada, a gastroenterologist who specializes in IBD at the University of Maryland Medical Center and Varada Srivastava, a Crohn’s disease patient and biotechnology major who is also a 2022 Crohn’s and Colitis Young Adults Network fellow

Concepts discussed on this episode include:

• Crohn’s and Colitis Young Adults Network
• Your Guide to Preparing for College with IBD
• IBD in College: 10 Easy Ways Students Can Manage
• Effects of Drinking Alcohol With IBD

Find Sandra Quezada, MD on Twitter and at University of Maryland School of Medicine.

Find Varada Srivastava on Instagram and at Crohn’s and Colitis Young Adults Network (CCYAN).

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https:/bit.ly/AIBD115

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Myths and misconceptions about IBD are common. Even amongst patients, there’s things that take time and education to understand because the things that swirl around in the public consciousness are not always true. To help understand why we can’t get rid of some of these common misconceptions, Amber Tresca is joined by gastroenterologist and IBDologist Siobhan Proksell, MD, and ulcerative colitis and irritable bowel syndrome (IBS) patient advocate Molly Dunham-Friel, MPH of Better Bellies By Molly.

Concepts discussed on this episode include:

• IBD Parenthood Project
• How Gut-Directed Hypnosis Helps IBS, IBD and Other GI Disorders
• What Is Perianal Crohn’s Disease?
• Does Stress Cause Inflammatory Bowel Disease?
• Hypnotherapy as an IBS Treatment Option

Find Siobhan Proksell, MD on Twitter, and at University of Miami.

Find Molly Dunham-Friel, MPH at Better Bellies By Molly, Facebook, YouTube, Instagram, and LinkedIn.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https:/bit.ly/AIBD114

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People who live with chronic illness don’t get training on how to deal with health insurance. Yet it is a major part of living with conditions such as Crohn’s disease or ulcerative colitis. Plus, it not only affects patients living with IBD, but our doctors and other healthcare providers are also frustrated and overburdened with dealing with red tape such as prior authorizations. Dr Shubha Bhat, a gastroenterology clinical pharmacist at the Cleveland Clinic and Jaime Holland, who is a healthcare activist and Crohn’s disease patient tell me how they handle health insurance complications and what we can do to change the system.

Concepts discussed on this episode include:

• 13 Million Americans Per Year Skip Medicine Due to High Prescription Cost
• What You Need to Know About Coinsurance
• How Prior Authorization Works
• Tips to Get a Health Insurance Prior Authorization Request Approved
• IBD Insurance Checklist
• Understanding Health Insurance

Find Shubha Bhat, PharmD on Twitter, LinkedIn, and Cleveland Clinic.

Find Jaime Holland at Pretty Rotten Guts, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https:/bit.ly/AIBD113

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People who live with Crohn’s disease or ulcerative colitis don’t want to feel like a burden. They may feel guilty about changing or canceling plans. Sometimes, people with IBD may not even want to make plans in the first place. A strong support system can help overcome these issues and help patients manage their new normal. Dr Alexandra Fuss, a clinical health psychologist and an Assistant Professor of Psychiatry in the Department of Psychiatry at Yale School of Medicine and Brooke Abbott, ulcerative colitis patient, founder of The Crazy Creole Mommy Chronicles, and co-founder of IBDMoms tell me how they have productive conversations with friends and family surrounding IBD.

Concepts discussed on this episode include:

• What to Know Before You Eat Out When You Have IBD
• How to Share a College Dorm Bathroom
• 7 Tips for Keeping IBD at Bay on Big Days
• Navigating Daily Life with IBD

Find Alexandra Fuss, PhD on Instagram, LinkedIn and at Yale School of Medicine.

Find Brooke Abbott at The Crazy Creole Mommy Chronicles, Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https:/bit.ly/AIBD112

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Ulcerative colitis and Crohn’s disease are complicated. There are choices to make along the treatment journey, which means that patients and their healthcare providers need to work together to find the right path. That’s where shared decision-making comes into play.

Healthcare providers can help patients learn about their options but patients need to speak up and help their doctors understand what they want from their treatment options, because it's not always obvious. To better understand shared decision-making in IBD, I speak to Dr Rajeev Jain, a gastroenterologist in private practice in Dallas, Texas and Caitlyn Smith, ulcerative colitis patient and editor at The Mighty.

Concepts discussed on this episode include:

• IBD Parenthood Project
• Shared Decision-making in IBD
• IBD Surgery Shared Decision-Making Toolkit
• Shared Decision-Making: Benefits to Care
• Shared Decision-Making: Being Prepared
• American Gastroenterological Association GI Patient Center

Find Rajeev Jain, MD on Twitter, Texas Digestive Disease Consultants.

Find Caitlyn Smith at The Mighty, Facebook, Twitter, LinkedIn, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https:/bit.ly/AIBD111

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After being diagnosed with a form of IBD, it can be a real challenge to understand that treatment is ongoing. Which might mean taking medications for long periods of time. It also means adding in lifestyle changes such as focusing on nutrition and diet, sleep, exercise, stress reduction, and learning about complimentary treatments that might be helpful.

There are a lot of barriers to getting treatment, though, including cost and access. Some people might not realize that not only can their healthcare team can help with accessing and understanding treatment choices, but that complimentary therapies have a valid place in the management of Crohn’s disease and ulcerative colitis.

Dr Badr Al-Bawardy, a gastroenterologist specializing in IBD and Assistant Professor of Medicine at Yale University School of Medicine and Tina Haupert, an ulcerative colitis patient, Certified Nutrition Coach, Functional Diagnostic Nutrition Practitioner, and founder of Carrots ‘N’ Cake uncover the ways medication and lifestyle changes can meet in the middle to help people with IBD live a better quality of life.

Concepts discussed on this episode include:

• How the Fecal Calprotectin Test Is Used in IBD
• Complementary Medicine with Dr. Badr Al Bawardy (YouTube)
• Causes and Risk Factors of Colon Cancer
• Why IBD Affects Your Sleep
• Yoga for Inflammatory Bowel Disease
• Acupuncture for Ulcerative Colitis (UC)
• Should You Exercise If You Have IBD?
• The IBD Anti-Inflammatory Diet

Find Badr Al-Bawardy, MD on Twitter, Yale Medicine, and LinkedIn.

Find Tina Haupert, FDN-P at Carrots ’N’ Cake, Instagram, Facebook, and the Carrots ’N’ Cake Podcast.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https:/bit.ly/AIBD110

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Setting goals is an important part of managing IBD. But after controlling symptoms: what other goals do patients have? They can be anything from being able to go up and down the stairs, to cooking a meal, to going back to an exercise program.

Treating to target is a concept that helps in goal-setting. But patients might not be using this method with their clinicians. Dr Neilanjan Nandi, Associate Professor of Clinical Medicine and IBD specialist at the University of Pennsylvania, Perelman School of Medicine and Jacklyn Green, ulcerative colitis patient, writer, and IBDMom, dig deeper into the idea of treat to target from both sides of the equation.

Concepts discussed on this episode include:

• How the Fecal Calprotectin Test Is Used in IBD
• What Is a C-Reactive Protein (CRP) Test?
• Erythrocyte Sedimentation Rate (Sed Rate) Overview
• The Effect of Nicotine on IBD
• A Gutsy Feeling

Find Neilanjan Nandi, MD at FITWITMD.com, Facebook, Instagram, and Twitter.

Find Jacklyn Green at www.jacklynhopes.com, Instagram, and Twitter.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Episode transcript and more information at https://bit.ly/AIBD109

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Inflammatory bowel disease (IBD) affects our quality of life. What that means, however, is going to be different for each person. It may depend on many factors including disease severity, access to care, and support structure.

The symptoms of ulcerative colitis such as diarrhea can prevent people from taking part in activities that aren’t near a bathroom. Bleeding can cause anemia, leaving people feeling tired and unable to go about regular activities. Not to mention the effects on mental health, relationships, and finances.

Danielle Gulden, ulcerative patient, ileostomate, and co-founder of Double Baggin’ It and Dr Nana Bernasko, IBD Nurse Practitioner and Assistant Professor of Medicine in the Division of Gastroenterology and Hepatology at Penn State Health, discuss how to manage the effects of IBD on everyday life.

Concepts discussed on this episode include:

• Rectal Bleeding and Inflammatory Bowel Disease
• The Impact of UC: Quality of Life
• The Impact of UC: Complications
• Types of Ulcerative Colitis (UC)
• What Inflammatory Bowel Disease Pain Feels Like
• Can a Gastropsychologist Help With Inflammatory Bowel Disease?

Find Dr Nana Bernasko on Instagram, LinkedIn, and Facebook.

Find Danielle Gulden of Double Baggin' It on Instagram, Twitter, and Facebook, and Tik Tok.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Transcript available at: https://bit.ly/AIBD108

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Once people understand that symptoms like ongoing diarrhea and bloody stools are not normal, they need a way to overcome embarrassment and talk their symptoms over with a health care provider. Having an open and honest conversation will help ensure a quicker diagnosis of ulcerative colitis and getting the right treatment.

On this episode, Rasheed Clarke, ulcerative colitis and j-pouch patient and author of Three Tablets Twice Daily and Dr Christina Ha, an IBDologist at the IBD Center at Cedars Sinai, provide support and guidance to patients with IBD symptoms, newly diagnosed patients, and anyone who is looking for a new way to speak with their health care providers about IBD treatments.

Concepts discussed on this episode include:

• Jimmy Kimmel Gets a Colonoscopy with Katie Couric (and Dr Ha)
• The Impact of UC: Quality of Life
• How to Find the Best Doctor for Ulcerative Colitis
• Types of Ulcerative Colitis (UC)
• Signs and Symptoms of Ulcerative Colitis
• Comparing 6 Biologic Drugs Used to Treat IBD

Find Dr Christina Ha at Cedars-Sinai, LinkedIn, and Twitter.

Find Rasheed Clarke at RasheedClarke.com, LinkedIn, and read Three Tablets Twice Daily.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Transcript available: https://bit.ly/AIBD107

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How is IBD different in kids than it is in adults? When should kids be transitioned from pediatric to adult care? What’s next for IBD treatments? My guest is Dr Jeffrey Hyams, the head of the Division of Digestive Diseases, Hepatology and Nutrition at Connecticut Children's, and a Professor of Pediatrics at the University of Connecticut School of Medicine. He provides a historical perspective on the treatment of IBD and is able to highlight how therapies have advanced over the last 30 years. He also gives some ideas about what’s on the horizon for IBD treatments and what gives him hope for the future.

Concepts discussed on this episode include:

• How IBD Affects Growth in Kids and Teens
• Managing Ulcerative Colitis in Children
• Bradley S. Jerson, PhD, Pediatric Psychologist, who appeared on Episode 77, Episode 78, and Episode 99
• Comparing 6 Biologic Drugs Used to Treat IBD

Find a transcript and more at: https://bit.ly/AIBD106

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

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Inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis, and indeterminate colitis) is being diagnosed in young people with greater frequency. Research on how to treat pediatric patients, and indeed how to prevent IBD in the first place, is still lacking. What’s not in short supply is the strength and resilience shown by pediatric IBD patients and their families. Meet Brooke, a pediatric patient at Connecticut Children’s Hospital who credits her dedicated IBD team with her ability to live a life filled with summer camp, dance, and tennis lessons, without the symptoms of ulcerative colitis.

Concepts discussed on this episode include:

• Camp Oasis
• Bradley S. Jerson, PhD, Pediatric Psychologist, who appeared on Episode 77, Episode 78, and Episode 99
• About IBD Podcast Episode 27 – Welcome to Camp Oasis
• Why Clinical Remission Is Not the Goal in IBD
• Avoiding Dehydration

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Transcript and more information available at: https://bit.ly/AIBD105

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Did you know that being diagnosed with ulcerative colitis or Crohn’s disease is a disqualifying condition to serve in the United States military? However, it seems that it’s not always an automatic reason for discharge. Lt Colonel Joshua Nelson was diagnosed with ulcerative colitis and needed to have ileostomy surgery. It cast into question his future as a pilot in the Air Force Reserve. Learn his story of how he worked with his medical team in order to keep doing the job he loves, his advice for others like him, and tips on flying that any ostomate can use.

Concepts discussed on this episode include:

• Types of Ulcerative Colitis (UC)
• Pseudopolyps in IBD
• Cryptosporidium Infection
• How to Prepare Yourself for Ileostomy Surgery
• Ulcerative Colitis Surgery
• Do Men Become Impotent After Ostomy Surgery?

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

Read the Transcript [PDF]

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Ulcerative colitis surgery is sometimes viewed as the last stop for treatment but it can be a good option to treat inflammatory bowel disease (IBD). Dr. Vikram Reddy, Division Chief of Yale Medicine, Colon and Rectal Surgery, answers questions about j-pouch surgery including how patients feel about it, how he manages his patients after surgery, what complications might occur, and why surgery for ulcerative colitis is complicated and nuanced.

Transcript and more information at: https://bit.ly/AIBD103

Concepts discussed on this episode include:

• Yale New Haven Health Digestive Health Service
• What's It Like To Have A J-Pouch?
• Do You Need A Colorectal Surgeon or Gastroenterologist?
• Overview of J-Pouch Surgery
• Ulcerative Colitis Surgery

Find Vikram B. Reddy, MD, PhD at Yale Colon and Rectal Surgery.

Find Yale New Haven Hospital at Twitter, Instagram, and Facebook, and Yale New Haven Hospital.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

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IBD is not a condition that is easy to diagnose or treat. People who live with Crohn’s disease or ulcerative colitis have needs that include guidance on nutrition. Diet is notoriously difficult to study but some research is starting to be done. Dannielle Jascot, MS, CNS, CDN, certified nutritionist and IBD patient talks over the recent results of the DINE-CD study, which compared the Specific Carbohydrate Diet and the Mediterranean Diet.

Episode page and transcript: https://bit.ly/2YIaZXk

Concepts discussed on this episode include:

• The Dine-CD Study and discussion of the results
• Local Crohn’s and Colitis Foundation Chapters
• Buy Tickets to the Bottoms Up Event

Find Dannielle Jascot on Facebook, Twitter, Instagram, and LinkedIn.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

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What should people who live with inflammatory bowel disease (IBD) eat? What diet plans are available? Barbara Olendzki, the Director of the Center for Applied Nutrition and an Associate Professor at the University of Massachusetts Chan Medical School, helped developed the inflammatory bowel disease anti-inflammatory diet (IBD-AID). The IBD-AID is currently being studied in pregnant people in the MELODY Trial. Barbara gives the lowdown on the IBD-AID, the MELODY Trial, and how and why she got started in the nutrition field.

Concepts discussed on this episode include:

• The MECONIUM Study (Exploring MEChanisms Of disease traNsmission In Utero through the Microbiome
• The MELODY Trial
• Anti-Inflammatory Diet for IBD (IBD-AID)

Find the University of Massachusetts Chan Medical School Center for Applied Nutrition on Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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How do your pets help you with your IBD? I speak to Meredith Mangold, "The Bowel Battling Badass,” about the role her dogs have played in her life. She became seriously ill with ulcerative colitis, which progressed into a rare complication called toxic megacolon. As her journey with IBD progressed, she eventually needed colectomy surgery, and has since been diagnosed with other immune-mediated conditions. Her two dogs, however, have become a big part of her advocacy work and they help her manage the pain and loneliness that come with chronic illness.

Concepts discussed on this episode:

• Toxic megacolon
• CT Scan
• Ileus
• Extra-intestinal Manifestations of IBD
• Postural Orthostatic Tachycardia Syndrome (POTS)
• Ehlers-Danlos Syndrome
• Steroid-Induced Osteoporosis

Find Meredith Mangold of The Bowel Battling Badass at Instagram, Facebook, and LinkedIn.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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The back to school period is already a time of so much change but once again in this pandemic, parents and school systems are also facing difficult choices. The experiences of families during the pandemic has been diverse, which means that individual needs need to be addressed. But how do we manage that? Dr Brad Jerson Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s, puts some framing around these issues and how we might approach them. Topics discussed include making the decision to go back to school in the building, 504 plans for kids with digestive conditions, and helping kids to transition to school in a difficult atmosphere.

Concepts discussed on this episode:

• 8 Tips to Help Kids With Special Needs Adjust to a New School Year
• What to Do When Your Child or Teen Doesn’t Want to Go Back to School
• What Should Parents Know About the Delta Variant, Kids and Back to School?
• How to Check On Your Child’s Mental Health

Find Dr Brad Jerson on Twitter and at Connecticut Children’s.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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This is the second part of my conversation with Kathleen Nicholls, author of "Go Your Crohn Way: A Gutsy Guide to Living with Crohn's Disease” and "My Flare Lady: A Handbook for Today's (Diseased) Dame.” Hear the first part in Episode 97, where Kathleen tells us about her Crohn’s disease diagnosis and how blogging became the way she processes her disease journey.

We talk about how to answer when people ask us how we’re doing. Which leads to another topic, and that’s how providers can ask patients about whether or not they want to pursue parenthood. Kathleen also gives blogging tips, including a hard truth, and offers advice to anyone who is newly diagnosed. However, I think her wisdom is important for long-term patients as well.

Buy Kathleen’s Books:

• Go Your Crohn Way: A Gutsy Guide to Living with Crohn's Disease
• My Flare Lady: a handbook for today's (diseased) dame

Find Kathleen Nicholls on YouTube, Twitter, Facebook, Instagram, and on her web site, KathFantastic.com.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Life with inflammatory bowel disease (IBD) brings challenges and many life changes but it can also sometimes bring unexpected opportunities.

Kathleen Nicholls, author of "Go Your Crohn Way: A Gutsy Guide to Living with Crohn's Disease” and "My Flare Lady: a handbook for today's (diseased) dame” was diagnosed with Crohn’s disease in her 20s. She started a blog as a way to process her disease journey. She was stunned when people started reading it and when publishers became interested. Two books later, she shares the lessons she learned along the way.

Buy Kathleen’s Books:

• Go Your Crohn Way: A Gutsy Guide to Living with Crohn's Disease
• My Flare Lady: a handbook for today's (diseased) dame

Find Kathleen Nicholls on YouTube, Twitter, Facebook, Instagram, and on her web site, KathFantastic.com.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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The patient advocacy space is lacking the voices of men and especially men of color. The result is that the IBD community is not diverse enough to provide the kind of support that they need.

Jordan McConnell, the founder of Crohn’s Veteran, is looking to change the dynamics of the online IBD space. Jordan served in the military and was eventually discharged due to his Crohn’s disease. It was a shock and changed his career plans unexpectedly. His disease journey showed him that he needed to be the change and he developed his podcast and his brand to support men and the larger IBD community.

Concepts discussed in this episode:

• Armed Services Vocational Aptitude Battery (ASVAB)
• Military Entrance Processing Stations (MEPS)
• How to Prepare Yourself for Ileostomy Surgery
• Parts of the Small Intestine

Find Jordan McConnell on LinkedIn, Facebook, and Instagram.

Find Crohn’s Veteran on YouTube, Twitter, Facebook, and Instagram, Twitch, and on their web site, Crohn’s Veteran.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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What is the next innovation in the treatment of inflammatory bowel disease (IBD)? Is it the microbiome? Stem cells? Or, is it the emerging field of bioelectric medicine?

IBD is a complicated disease to treat and can bring complications and other, related conditions. The problem is the immune-mediated nature of the disease and how it affects the entire body. For Kelly Owens, who lives with Crohn’s disease, bioelectric medicine has bumped her into remission and changed her life in several ways. Today she goes by "Vagus Nerve Girl” because she had a device implanted in her chest that stimulates her vagus nerve. For her, this treatment has been a resounding success.

Episode page and transcript can be found at: https://aboutibd.com/?p=1984

Concepts discussed in this episode:

• TED Talk: How electricity could replace your medications - Neurosurgeon Kevin Tracey
• Osteoporosis
• Discovery and Functions of Acetylcholine
• Anatomy of the Vagus Nerve
• What Is Vagus Nerve Stimulation (VNS)?

Find Kelly Owens on Twitter, Facebook, and Instagram and on her blog, Vagus Nerve Girl.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Motherhood comes in all shapes and sizes. The intersection of inflammatory bowel disease (IBD) and motherhood is often left out of the discussion and single motherhood and IBD is pretty much ignored altogether. That's why I asked my close friend and co-founder of IBDMoms, Brooke Abbott of The Crazy Creole Mommy Chronicles, to tell me about her challenges and her successes living with IBD, a j-pouch, and being a single mom of a young son.

Concepts discussed in this episode:

• What Are the Five Love Languages?
• An Overview of Asacol (Oral Mesalamine)
• How Does Implicit Bias Influence Behavior?
• Black Women Suffer Most From Restrictive Reproduction Policies, Study Shows
• Racial Disparities in Maternal Health May Be at a Pivot Point
• How Prince Shook Up the Music Industry
• Motherhood Unplugged on Lights, Camera, Crohn's

Complete show notes and transcript found at https://aboutibd.com/?p=1965.

Find Brooke Abbott on Twitter, Facebook, and Instagram and on her blog, The Crazy Creole Mommy Chronicles.

Find IBDMoms on Facebook, Twitter, and Instagram

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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It's one thing to talk to your physicians about becoming pregnant when you live with ulcerative colitis or Crohn's disease. But what about getting the benefit of experiences from the mothers who have been through a pregnancy, birth, and breastfeeding journey? Former news anchor and current blogger and Crohn's patient Natalie Hayden gives her experiences with pregnancy and receiving biologics, as well as how she has participated in research during her pregnancies and the benefits it offers her family.

Concepts discussed in this episode:

• What is Symphysis Pubis Dysfunction?
• An Overview of Sacroiliac Joint Pain
• IBD Parenthood Project
• Mother to Baby Studies - Crohn's Disease
• Mother to Baby Studies - Ulcerative Colitis
• Maternal-Fetal Medicine Specialist
• What Is Colostrum?
• Motherhood Unplugged on
• The PIANO Registry

Complete show notes and transcript found at https://aboutibd.com/2021/05/16/about-ibd-podcast-episode-93---motherhood-unplugged-with-natalie-hayden/

Find Natalie Hayden, MD on Twitter, Facebook, Instagram, and at Lights, Camera, Crohn's.

Find IBDMoms on Facebook, Twitter, and Instagram

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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We used to be told that women with IBD couldn’t have children. We were also told people with IBD shouldn’t have children.

The truth is this: women with IBD get pregnant and have healthy pregnancies and babies. We have more evidence and guidance than ever before. Gastroenterologist Dr Jill Gaidos, Associate Professor of Medicine in the section of Digestive Diseases and the Director of Clinical Research for the Yale Inflammatory Bowel Diseases Program discusses the finer points of pregnancy and IBD. When to seek help for fertility, what medications should be continued in pregnancy, and the risk of passing on IBD to children.

Concepts discussed in this episode:

• The PIANO Registry
• Conversations with Women in GI
• Updates on the Safety of Using Newer IBD Medications during Pregnancy

Find Jill Gaidos, MD on Twitter and at Yale Health.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Hey, it's Amber. I want to tell you about my limited podcast series, Healthcare Disparities in IBD.

IBD used to be thought of as a Western disease. Something that happened in developed countries like the United States, Canada, the UK, and Australia. IBD was also thought to mainly affect White people and people of Jewish heritage. However, these demographics are changing, and IBD is now considered a global disease.[1]

A harmful and pervasive misconception is that IBD does not affect people of various ethnic and cultural backgrounds. Minority patients are sometimes told that they can't have an IBD because they are of African, Latinx, Native American, or Asian descent. This leads to a delay in diagnosis and care. In the setting of IBD, which is difficult to treat, this can lead to significant complications that negatively affect every aspect of a person's life.

In this limited series, we explore the ways in which the healthcare system is underserving minority and LGBTQ patients who live with an IBD. We cover the spectrum of this issue including the lack of research in minority populations, how cultural ideas around nutrition affects patients, how patients of color can be better supported, and how legislation can play a role.

As a long-term IBD patient myself, it's my goal to help physicians, industry, and legislators understand how inequalities affect the IBD community and what they should be doing to improve patient care.

Subscribe to Healthcare Disparities in IBD wherever you listen to podcasts.

[1]Molodecky NA, Soon IS, Rabi DM, et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012;142:46-e30. doi:10.1053/j.gastro.2011.10.001

Credits:

Healthcare Disparities in IBD is written, produced, and directed by Amber Tresca.

Theme music, mix, and sound design is by Cooney Studio.

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Have you ever seen a person who lives with inflammatory bowel disease (IBD) in a movie or TV show? If so: was the depiction positive or negative?

My guest is actor, writer, and filmmaker Derek Mari. Derek lives with Crohn's disease and his IBD journey inspired him to create a story that explores the way people cope with living with a chronic illness. He has already filmed a short film, entitled "Crohnie," which was positively received at several film festivals (before the pandemic shut everything down).

Derek's next project is a full-length feature film with a main character who lives with Crohn's disease. Loosely autobiographical, it will examine the journey to acceptance of life with a chronic illness, and show how that life can be full and filled with success. Learn more about Derek and his Crohn's story, as well as how you can get involved in the crowdfunding program to get this film made.

Find Crohnie Movie on Vimeo, Facebook, Twitter, and Instagram.

Find Derek Mari on Vimeo, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Telling your Crohn's disease or ulcerative colitis story is powerful. It can be freeing but it can also come with some unexpected side effects.

Welcome back Rosanne Mottola, who originally intended to talk over receiving her second dose of the Pfizer BioNtech COVID-19 vaccine. She told her ulcerative colitis story and about receiving her first dose on Episode 87, "COVID-19 Vaccination With UC Patient Rosanne Mottola." She gives her experience on her second dose, how it affected her, and what her family's plans are now that she's vaccinated.

Additionally, Rosanne had another part of her journey that she wanted to share. She listened to her first About IBD episode (something a lot of guests don't actually do), as did her family. Reflecting on her ulcerative colitis journey brought things back in a fresh way. She tells me how revisiting some parts of her life in this way was both troubling and healing. It's an important part of the disease journey, especially for those who tell their story publicly, that doesn't often get discussed.

Concepts discussed on this episode:

• Clostridium Difficile Infection With Inflammatory Bowel Disease
• Dependent Coverage for Young Adults
• CDC: COVID Vaccine Doses Can Be Spaced Up to 6 Weeks Apart
• You Got Your COVID-19 Vaccine. Now What?
• CDC: Fully Vaccinated People Don't Need to Quarantine After COVID-19 Exposure
• Yes, Social Distancing Does Lower Your Chance of Contracting COVID-19
• Here's Why Your Symptoms May Be Worse After Your Second COVID-19 Shot
• 5 Ways To Prepare for Your COVID-19 Vaccination

Find Rosanne Mottola on Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Living with one disease is bad enough, but living with two adds more than two times the complexity. As a young man, Aaron Blocker was diagnosed with Crohn’s disease after years of coping with strange and seemingly disconnected signs and symptoms. He continued to have problems which resulted in two hip replacements that were blamed on prednisone. However, after one of those hip replacements became dislocated, Aaron went looking for more answers and wound up suspecting that he also had an ultra-rare condition called hypophosphatasia.

Concepts discussed on this episode:

• Osteonecrosis (Avascular Necrosis) Explained
• What Is Alkaline Phosphatase?
• Soft Bones, Inc
• National Organization for Rare Disorders (NORD)
• Ultra-rare disease diagnosis is an uphill battle

Find Aaron Blocker on Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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During times of stress, our personal relationships may suffer. In the pandemic, we are finding ourselves spending a lot of time with those in our households, and for couples, that can start to take a toll. Certified sex educator Kait Scalisi, founder of Passion By Kait, shares her knowledge and experience as a neuroscientist, public health professional, and couples' counselor to help us understand how to better manage our relationships during the pandemic and beyond.

Concepts discussed on this episode:

• Sexy Truth or Dare Pick A Stick
• How to Be a Good Partner During Quarantine
• How to Keep the Romance Alive Amid the Coronavirus Pandemic
• 3 Fun Sex Ideas for Couples—That You Can Try Tonight
• Mindful Sex Practices
• Sexy Conversation Starter Kit

Find Kait Scalisi, founder of Passion By Kait, on Facebook, Twitter, and Instagram, YouTube, and Pinterest.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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People with IBD and other chronic conditions have questions about receiving the COVID-19 vaccination. Rosanne Mottola works at a hospital and was therefore eligible to receive a vaccination through her employer. Rosanne gives her experiences and takeaways as a "mild to moderate" ulcerative colitis patient and how she made the decision to receive the SARS-CoV-2 vaccine. She offers some great advice about how the internet may skew our perception of what IBD life is like, and because of her background, she's a wonderful resource for people living with IBD.

Concepts discussed on this episode:

• An Overview of C. Diff
• Can Immunocompromised People Safely Receive the COVID-19 Vaccine?
• An Overview of Pfizer's COVID-19 Vaccine

Find Rosanne Mottola on Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Did an IBD diagnosis change the direction of your life? For Danielle Golden and Joe Teeters, being diagnosed as a young adult had a profound influence on their lives. The plans they had for their lives were derailed, but they only met, formed a strong friendship, and founded Double Baggin' It because of their IBD. Learn more about their disease journeys, how they met, and how they use humor to raise awareness of IBD and ostomy life both inside and outside the IBD community.

Further Reading:

• Pre-Existing Condition—What It Is & Why It’s a Big Deal
• Dependent Coverage for Young Adults
• Proctectomy Surgery for Inflammatory Bowel Disease
• How to Prepare Yourself for Ileostomy Surgery
• Leading Charities and Organizations for Ostomy Surgery

Find Double Baggin' It at Instagram, Twitter, and Facebook.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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What does it mean to act with intention? The pandemic altered the course of our year and divorced us from our intentions. However, there were learnings that we can build on to create a better, more inclusive, and informed IBD community. In this mini-episode, I share my thoughts on how the year affected me and how I plan to move forward in 2021 by getting back to my intentions.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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From the beginning of the COVID-19 pandemic, people with inflammatory bowel disease (IBD) have had many questions. Now that vaccines against the virus are becoming available, people living with Crohn's disease or ulcerative colitis need even more information in order to make decisions. I asked Dr David Rubin, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine to answer some of these initial questions about the first COVID-19 vaccines (manufactured by Pfizer and Moderna). Topics discussed on this episode include:

• How vaccines work
• How mRNA works
• How IBD medications affect the immune system
• IBD medications and their potential effect on COVID-19 vaccination
• When we'll have more information about COVID-19 vaccines and IBD
• Why side effects with vaccines are expected and what they mean

Key Quotes:

• The first thing is to remember that inflammatory bowel disease itself is a condition where in almost all situations, the immune system is overactive. So having Crohn's disease or ulcerative colitis is not a situation where you're immune deficient.
• So IBD patients in all the analyses during COVID have not actually been found to be at increased risk for getting infected, or at increased risk for developing COVID as having just because they have Crohn's or colitis or have an ostomy or have a j pouch.
• The messenger RNA is degraded within a couple days it's out of your system doesn't hang around. It doesn't ever enter the nucleus of cells, it doesn't become a permanent part of your genetic material in your body. And therefore that's why it is thought to be extremely safe.
• But I want to make it clear to everyone that they didn't just decide to do this in February, March. This was something that actually was in development, it just got pushed through because of the critical nature of the pandemic.
• ... there are no data to say that vaccination triggers IBD. And it's been looked at carefully in many studies. And there's no data to show that getting a vaccine triggers a relapse of your IBD. And the newer vaccines that we're talking about here, will not do that either.
• ...we don't know for sure yet is whether you'll have impaired ability to mount a protective immunity at the same level as if you weren't on therapy. But that doesn't mean you won't develop any immunity. And in fact, it's possible that you'll develop the same immunities to general population because the messenger RNA vaccine is a completely new mechanism.

Dr Rubin's Tweets and Tweetorials:

• "I've created a thread that summarizes the statements from the #IOIBD global expert panel about management of #IBD during #COVID19." https://threadreaderapp.com/thread/1247526583985823749.html
• "Here are my thoughts and a few updates about #SARSCoV2 vaccines, and also about implications for our #IBD patients. A tweetorial in 20 parts." https://threadreaderapp.com/thread/1333972549848469508.html
• "Terrific @US_FDA presser this morning. The agency has its origins in SAFETY and then EFFICACY became part of their regulatory pathway. Both Director Hahn @SteveFDA and career scientist Dr. Peter Marks @FDACBER used the language "safety and efficacy" (in that order). IMPORTANT." https://twitter.com/IBDMD/status/1337771896721563655

Further Reading:

• Understanding How Vaccines Work
• How mRNA Vaccines Work
• Understanding and Explaining mRNA COVID-19 Vaccines
• How the Pfizer-BioNTech Vaccine Works (NYT: Paywall)
• GI Physicians Urge COVID-19 Vaccines for All IBD Patients
• COVID-19 Vaccines: What IBD Patients & Caregivers Need to Know
• Getting a COVID-19 Vaccine: What to Know If You’re Immunocompromised
• Expect Mild Side Effects From COVID-19 Vaccines, CDC Advisory Group Says
• Doctors for America COVID Vaccine FAQ Toolkit

Scholarly Publications:

• Winter is coming! Clinical, immunological, and practical considerations for vaccinating patients with IBD during the COVID pandemic
• COVID-19 vaccinations in patients with inflammatory bowel disease
• Safety and immunogenicity of the ChAdOx1 nCoV-19 vaccine against SARS-CoV-2: a preliminary report of a phase 1/2, single-blind, randomised controlled trial

Find David T. Rubin, MD at The University of Chicago Medicine, Twitter, Rubin Lab, Rubin's Reflections (Blog), and Cornerstones Health.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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For many of us who live with a form of IBD, being a performer seems like it would be impossible. Some of the problems include needing a job that provides health insurance, the stress of auditions, and being healthy enough to perform onstage. Justin Baker, however, has found a way to make it work for him as he lives with Crohn's disease and ankylosing spondylitis (a form of degenerative arthritis that's associated with IBD). Justin is an actor, a photographer, and a clown. He tells me how he manages stress, how empathy informs his work and his life, and how not having health insurance led to emergency surgery for his Crohn's disease.

Concepts discussed in this episode:

• Ankylosing Spondylitis
• "Find the Pony"
• Camp Esperanza

Find Justin Baker, actor, on Acts4Food, Facebook, Twitter, YouTube, and Instagram.

Find Justin Baker, photographer, on Photo-Baker.com and Instagram.

Find "You Don't Look Sick: A Documentary Series," on Facebook and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Crohn's and Colitis Awareness Week is full of events that aim to raise funds and understanding of inflammatory bowel disease (IBD). One of these is Gaming4Guts, a gaming marathon to raise funds for the Crohn's & Colitis Foundation. Participants stream over Twitch during the 72-hour event but they have also formed a community, keeping in contact year-round on the Gaming4Guts Discord server. Kenzie, John, and Mark from Gaming4Guts sat down with me to talk about their personal connections to IBD, the evolution of Gaming4Guts, and what their goals are this year.

Donate to Gaming4Guts on Tiltify.

Concepts discussed in this episode:

• Indeterminate Colitis
• Pott Puffy Tumor
• Exclusive Enteral Nutrition (EEN)

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Find Gaming4Guts on Twitch, Discord, Facebook, and Twitter.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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After hearing from my 10-year-old daughter, it’s now time to hear from my 13-year-old son. My kids are in hybrid school, and for my 8th grader, this means he goes to school in person two full days a week, with 3 days of distance learning at home. We are managing it as well as I think we can expect. However, my son brings up a small wrinkle in regards to the "return to normal" to which we are all looking forward. It is going to be challenging for us to go back to our prior pace and there will be new struggles along the way. Be sure to listen to the end to hear my son’s tips for parents on how to talk to their kids.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Find IBDMoms on IBDMoms.org, Facebook, Twitter, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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How often do you check in with your friends and family about how they're doing during the pandemic? Families have had to make difficult choices regarding school, playdates, and extracurricular activities. We are all concerned about how our kids are faring during the pandemic. But are we asking them about their worries and concerns as often as we should? Amber sits down with her 10-year-old daughter to talk about hybrid school, concerns about getting sick with COVID, what kids are missing right now, and what they want to do when the pandemic is over.

Concepts discussed in this episode:

• 7 Random Acts of Kindness for Kids
• The Benefits of Altruism for Stress Management
• How to Practice Gratitude This Thanksgiving

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Find IBDMoms on IBDMoms.org, Facebook, Twitter, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Do you worry that inflammatory bowel disease (IBD) will get in the way of finding a romantic partner? Crohn's disease or ulcerative colitis can make dating challenging but they can also simplify it. It becomes clear pretty quickly if a potential partner is going to struggle to cope with chronic illness. This episode focuses on communication, as Amber and her husband, Mike, discuss how he reacted to his first introduction to ulcerative colitis and why it's important to check in with your partner before discussing IBD outside of the relationship. After more than 20 years, they finally put an incident of miscommunication to bed, and Mike gives his tips on being a supportive partner.

Concepts discussed in this episode:

• Advice for Partners of People With IBD
• How to Create Your IBD Elevator Speech
• The Differences Between an Ileostomy and a J-Pouch
• How to Prepare Yourself for Ileostomy Surgery
• Overview of J-Pouch Surgery
• What You Can Say to Your Friend With IBD
• Pregnancy and Inflammatory Bowel Disease
• Living With Prednisone

Find Michael Tresca on Facebook, Twitter, and Patreon.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Find IBDMoms on IBDMoms.org, Facebook, Twitter, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Inflammatory bowel disease (IBD) affects more than the digestive system. Crohn’s disease or ulcerative colitis can also affect the eyes, joints, and skin. Jordan Ditty was diagnosed with IBD as a child, though her diagnosis floated between Crohn’s and ulcerative colitis and she had j-pouch surgery due to a colonic perforation. Recently, she had her j-pouch removed and a permanent ileostomy placed. Surgery gave her with a better quality of life but also a new diagnosis of a skin condition related to IBD, called pyoderma gangrenosum. Learn how Jordan remains hopeful through her long journey with IBD and a host of complications.

Concepts discussed in this episode:

• The Differences Between an Ileostomy and a J-Pouch
• Fistula Types, Diagnosis, Treatment, and Prognosis
• How to Prepare Yourself for Ileostomy Surgery
• Mouth Ulcers (Aphthous Stomatitis)
• Overview of J-Pouch Surgery
• Pouchitis After IPAA (J-Pouch) Surgery
• Proctectomy Surgery for Inflammatory Bowel Disease (“Barbie” butt or “Ken” butt surgery)
• Pyoderma Gangrenosum as a Potential Complication of IBD

Find Jordan Ditty on Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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I'm taking some time off from producing new episodes of About IBD. But I don't want to leave you without great Crohn's disease and ulcerative colitis content for your ears. That’s why I’m sharing another podcast with you, called PSC Mami. PSC stands for primary sclerosing cholangitis, and it’s a liver condition that is related to IBD, and ulcerative colitis in particular.

PSC Mami brings you stories at the intersection of PSC and parenthood. You can find PSC Mami in any podcast app as well as on Facebook, Instagram, and Twitter. The host of PSC Mami is Monika Aldarondo, who talks to parents about their perspective on life with IBD and PSC. Subscribe to PSC Mami in your favorite podcast app, including Apple Podcasts, Google Podcasts, Stitcher, and Soundcloud.

Find PSC Mami on her web site, Facebook, Instagram, and Twitter.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design for About IBD is by Mac Cooney. Theme music, "IBD Dance Party," is from ©Cooney Studio.

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I'm taking some time off from producing new episodes of About IBD. But I don't want to leave you without great Crohn's disease and ulcerative colitis content for your ears. That's why I'm sharing a new IBD podcast with you, called Crohn's Veteran. You can find Crohn's Veteran in any podcast app as well as on Facebook, YouTube, Instagram, and Twitter. The Crohn's Veteran hosts are Jordan McConnell, CJ Cabrera, and Renika Wood, who give their perspective on life with IBD and interview guests from the IBD community. Subscribe to Crohn's Veteran in your favorite podcast app, including Apple Podcasts, Google Podcasts, Spotify, and Anchor.

Find Crohn's Veteran on their blog, Facebook, YouTube, Instagram, Twitter, Twitch, and their merch store.

Find the Crohn's Veteran hosts on their personal Instagram accounts: Jordan McConnell, CJ Cabrera, and Renika Wood.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design for About IBD is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Kids with chronic illness face special issues when going back to school because they’re at risk of their accommodations becoming eroded. In particular, children who live with Crohn’s disease or ulcerative colitis, might be in danger of not being granted appropriate bathroom access. I speak with Dr Brad Jerson, a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine. We discuss the worrying behaviors that parents should watch out for in their kids and how we can help kids who feel scared to go back to school.

Episode transcript: https://bit.ly/AIBD78

Concepts discussed in this episode:

• How to Practice Active Listening
• How Is Your Child Coping With COVID-19? Here’s What to Look For
• Managing Family Stress During COVID-19
• Template Section 504 Plan for Children with Inflammatory Bowel Disease

IBD Patient Advocacy Organizations

• Connecting to Cure Crohn's and Colitis
• Crohn's and Colitis Australia
• Crohn’s and Colitis Canada
• Crohn's and Colitis New Zealand
• Crohn’s and Colitis Foundation
• The European Federation of Crohn's & Ulcerative Colitis Associations
• Girls With Guts
• IBDMoms (Amber is a co-founder)

IBD Apps

• Gali Health (Affiliate Link)
• The Mighty
• Healthline IBD (Includes Podcasts Hosted By Amber)

Find Dr Brad Jerson on Twitter and at Connecticut Children’s.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Back to school will be quite different for families across the United States and the world this year. There aren’t many answers to be had to our questions, yet we must make decisions with the best information that we have at this time. I speak with Dr Brad Jerson, a Pediatric Psychologist in the Division of Digestive Diseases, Hepatology, and Nutrition at Connecticut Children’s and an Assistant Professor of Pediatrics at the University of Connecticut School of Medicine about how we can prepare our kids, and ourselves, for the school year. We discuss the behaviors we can model for our children, how we can talk to young kids about mask wearing, and how to engage kids of all ages in conversation about their fears and anxieties during this time.

Concepts discussed in this episode:

• A Checklist to Help Parents Decide: Send Kids Back to School or Keep Them Home During COVID-19?
• Is It Safe to Send Your Child Back to School During COVID-19? Advice From Connecticut Children’s Physician-in-Chief
• Ask a Pediatrician: Is It a Good Idea for My Child With Asthma to Go Back to School or Day Care During COVID-19?
• 7 Ways to Introduce Your Child to Wearing a Mask
• Coronavirus and IBD Reporting Database

Find Dr Brad Jerson on Twitter and at Connecticut Children’s.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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While everyone who lives with inflammatory bowel disease (Crohn's disease, ulcerative colitis, indeterminate colitis), or IBD, has their own story, there are major themes. Finding someone whose story is similar to yours is both validating and empowering. This is why Amber Tresca, who lives with ulcerative colitis and a j-pouch, developed the About IBD Podcast. IBD is not only isolating but it also affects every aspect of the lives of those who live with these diseases. It touches relationships, finances, and careers. On About IBD, Amber talks to caregivers and people living with IBD to get their stories so that they can share what they’ve learned from their journey. She also talks to healthcare providers and other experts to get their perspective on a wide variety of topics including research about IBD, improving relationships with physicians, becoming a critical thinker, and how to get involved with healthcare activism. Amber wants to give people touched by IBD the information they need to live a better life, as well as feel less alone while navigating the ups and downs of the patient journey. Subscribe to About IBD on Apple Podcasts, Google Podcasts, or your favorite podcast app. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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What’s in your microbiome and how does it interact with your IBD? The bacteria that’s in the gut of someone that lives with IBD is different from the bacteria in the the gut of someone that doesn’t have IBD. This is a major area of study because it may help researchers not only in developing new treatments but also in better understanding IBD. That’s why I asked Arielle Radin, Director of Clinical Research for Gali Health, to talk to me about the Footprints Program. The Footprints Program is an ambitious research project that is going to sequence poop and saliva from IBD patients. It’s being used in conjunction with the Gali Health app, which is made especially for IBD patients to track their symptoms and connect with other people who live with Crohn’s disease or ulcerative colitis. Participants in the Footprints Program will get access to some information about their microbiome. They can then look at the changes over time and see if there are any trends with the symptoms that are kept in the Gali app. It sounds pretty amazing, which is why I signed up for the program. Arielle Radin, who answers my questions about Gali Health and the Footprints Program, and on a personal note, tells us about getting married during the pandemic.

Concepts discussed in this episode:

• Research Studies & Clinical Trials in IBD Roundtable
• The Footprints Program
• Download the Gali App (affiliate link)

Find Gali Health at GaliHealth.com, Facebook, Twitter, LinkedIn, YouTube, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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The Sherman Prize is an award created by Bruce and Cynthia Sherman to recognize those who are making great contributions to the field of research and care in inflammatory bowel disease (IBD). The Sherman family has been touched by IBD and their goal is to create a ripple effect that spreads awareness, fosters innovation, and provides inspiration in the hope that in the future, other families won’t have to contend with IBD in the way that theirs has. Dr Dermot McGovern, Professor of Medicine at the David Geffen School of Medicine at the University of California in Los Angeles and the 2020 Committee Chair for The Sherman Prize talks more about the value of the Prize to the IBD community, who can make a nomination, and how to nominate a great candidate. He also talks about his research on the genetics of IBD and why it might help in leading to new treatments.

Make your nominations for the 2020 Sherman Prize 2020 by July 17th! You can learn more and do so at ShermanPrize.org.

Find The Sherman Prize at ShermanPrize.org, Facebook, Twitter, and LinkedIn.

Find Dermot P. B. McGovern, MD, PhD, FRCP at Cedars-Sinai and Twitter.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Being diagnosed with inflammatory bowel disease (Crohn’s disease or ulcerative colitis) can upend your entire life. Then being diagnosed with a rare liver disease? It could truly leave you feeling hopeless. But that’s not what happened to Jenna Ziegler of The Comical Colon. Not long after her ulcerative colitis diagnosis, her doctor was concerned about her liver test levels. With more testing and a lot of patient empowerment, Jenna now has a presumed diagnosis of primary sclerosing cholangitis, or PSC. She tells how she has fought to get the tests she needed to understand her level of risk, and the treatment that can help prevent PSC from progressing and causing more damage to her liver.

Concepts discussed in this episode:

• Clostridium difficile Infection
• Liver Function Tests
• IBD and Liver Disease
• IBD and PSC
• Biopsy
• Fibroscan
• Cirrhosis
• Enteropathic Arthritis
• Jenna’s Liver Biopsy Series

Learn about Gali Health and download the app (affiliate link).

Find Jenna Ziegler at TheComicalColon.com, Facebook, Twitter, Instagram, and LinkedIn.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Mix and sound design is by Mac Cooney. Theme music, "IBD Dance Party,” is from ©Cooney Studio.

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Do you have a sense of humor about your IBD? Jenna Ziegler of The Comical Colon found that keeping her sense of humor has helped her through the challenges she faced after being diagnosed with ulcerative colitis in college. After fighting her way back to health after severe flare-ups and carving out the life she wanted for herself, Jenna received another stunning diagnosis: a rare liver condition called primary sclerosing cholangitis, or PSC. Over the years she has done the hard work to learn how to be an empowered patient and she shares her 5 tips on how you can learn to advocate for yourself.

Concepts discussed in this episode:

• Pancolitis
• Helicobacter pylori
• IBD and Liver Disease
• IBD and Primary Sclerosing Cholangitis (PSC)

Learn about Gali Health and download the app (affiliate link).

Find Jenna Ziegler at TheComicalColon.com, Facebook, Twitter, Instagram, and LinkedIn.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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What has been your experience with ostomy surgery? If you know someone who lives with an ileostomy or a colostomy, you'll likely get your impression about having a stoma from them. But what if that person struggles to accept their stoma? When Amber Wallace Ogle of The Ostomy Diaries was faced with ileostomy surgery to treat her Crohn's disease, she was reminded of the negative experiences of her family members who lived with an ostomy. However, it didn't take long after her surgery before she was embracing life again and working to show others that life with an ostomy can be fulfilling and beautiful. Amber tells her Crohn's disease story, gives 5 tips for advocating online, and shares a message she received from a family that has been touched by her advocacy.

Concepts discussed in this episode:

• Clostridium difficile
• Colectomy
• Proctectomy

Find Amber Wallace Ogle at OstomyDiaries,com, YouTube, Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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How does being diagnosed with a chronic illness affect your path in life? For Mariah Leach, a rheumatoid arthritis diagnosis came out of the blue and put her at a crossroads. She decided to take the road towards patient advocacy. What started as a way to process her feelings and keep family and friends updated about her condition through her writing has evolved into a calling. Today, she has become a tireless advocate for people living with rheumatoid arthritis and as a resource for parents with chronic illness. It’s Mariah’s goal to ensure no one feels alone in their parenting journey. To that end, she has developed Mamas Facing Forward to support parents and foster the connections she was missing in her first years as a mom.

Looking for ideas to keep kids occupied this summer? Learn about the Mamas Facing Forward Stay Home Summer Camp!

Find Mariah Leach at From This Point. Forward., Facebook, Twitter, and Instagram.

Find Mamas Facing Forward on Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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How would you answer these questions about your inflammatory bowel disease (IBD)?

• What is the best part of having IBD?
• What is the hardest part of your day?
• What is your least favorite treatment?
• If you could choose one dance for your doctor, what would it be and why?
• What is one thing you wish people knew about your condition?

Amber answers these questions, posed by Shawntel Bethea of Crohn's & Stuff, for fun and also to get the conversation started about how Crohn’s disease and ulcerative colitis affect our lives.

Find Shawntel Bethea of Crohn’s & Stuff on YouTube, Facebook, Twitter, and Instagram. Answer the 5 questions, tag her on social media, and use #IBDTag.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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Telehealth has become part of our new normal as we practice physical distancing during the COVID-19 pandemic. Several of the barriers that prevented us from being able to see our doctors for an appointment via a telephone call or a video call have now been managed. However, it’s still a new way to receive healthcare, and both patients and clinicians are adjusting. Learn from Neilanjan Nandi, MD, gastroenterologist and Associate Professor of Clinical Medicine at Penn Presbyterian Medical Center and the University of Pennsylvania about what patients can do to be ready for their telehealth appointments and what it’s like from the doctor’s side of the video conference call.

Concepts discussed on this episode:

• What Is Dyspnea?
• An Overview of Anal or Rectal Abscess
• Anemia and Its Relationship With IBD
• How to Use Telehealth Services During the COVID-19 Outbreak and Beyond

For more information on telehealth appointments, see Tips for Telehealth and Managing Your IBD Care During the COVID-19 Pandemic from Tina Aswani Omprakash of Own Your Crohn's.

Find Neilanjan Nandi, MD on Facebook, Instagram, and Twitter.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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People living with IBD who have suppressed immune systems because of medication are understandably concerned about their risks surrounding the novel coronavirus and COVID-19. Jamie Horrigan, a medical student and founder of "Sweetened By Nature," lives with Crohn’s disease and gastroparesis and was diagnosed with COVID-19. She describes her experiences with symptoms, diagnosis, isolation, and recovery. She also gives some insight on why a common complication of coronaviruses, called a cytokine storm, may be an important factor of COVID-19 for people with IBD.

Concepts discussed on this episode:

• Coronavirus (COVID-19) testing: What you should know (UC Davis Health)
• Mount Sinai COVID-19 Plasma Donation
• National COVID-19 Convalescent Plasma Project
• IOIBD Update on COVID19 for Patients with Crohn’s Disease and Ulcerative Colitis
• The Coronavirus Patients Betrayed by Their Own Immune Systems (Cytokine Storm)
• Coronavirus and IBD Reporting Database
• IBD-AID Diet (Anti-Inflammatory Diet for IBD)
• The Specific Carbohydrate Diet for IBD

Find Jamie Horrigan on Facebook, Instagram, Twitter, Pinterest, and on her web site Sweetened by Nature.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "About IBD With Amber Tresca" ©Cooney Studio.

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We’re living through an usual time and people living with Crohn’s disease or ulcerative colitis have many questions about how the pandemic may affect them. IBD experts agree that it’s important to continue receiving medications during this time to avoid a flare-up. That might mean traveling to an infusion center, hospital, or doctor’s office for treatment. Julie Kennedy of The Semicolon Girl recounts her experience in receiving her infusion of her Crohn’s disease medication in the era of COVID-19, including how the procedure was different, and gives her tips on how to make the process go as smoothly as possible.

• People with IBD are not at a greater risk of being infected with the novel coronavirus
• Having IBD does not mean a person is immunosuppressed
• People who have had a colectomy and who live with an ostomy or a j-pouch are also not considered immunosuppressed
• Experts are advising that people with IBD should stay on their medications

Find Julie Kennedy on Facebook, Instagram, Twitter, and on her web site, The Sick Adventures of a Semi Colon Girl. Read her blog post about her infusion, Adventures in Pandemics.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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This is the second episode of my series talking to people who live with a permanent ostomy and exploring why they share their stories publicly and what it means to the ostomy community. I connected with Austin Powers on Twitter where he goes by Ostomy Guy. He has a podcast of the same name where he interviews people who live with an ostomy or who have other serious medical conditions. His path to becoming public about his ostomy started unexpectedly when he sat down to write about his disease journey. What started as a vague idea about writing a blog turned into a book, The Ostomy Guy Story: Memoirs of a Bagman, which is available on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story.

Find the Ostomy Guy on Facebook, Instagram, Twitter, and on his site, theostomyguy.com. You can also buy his book, The Ostomy Guy Story: Memoirs of a Bagman, on Amazon.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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Ostomy surgery is a life-saving procedure that can improve quality of life, but that doesn’t mean it is always easy to accept. Stephanie Hughes founded The Stolen Colon after having surgery to place an ileostomy to treat her Crohn’s disease. She’s an ostomate, but she’s also a writer, a woman, a wife, a mother, and a resource for people in the IBD and the ostomy community. She shares her journey through Crohn’s disease and acceptance of her ostomy with me, including what her kids think of her stoma, how she manages issues around privacy, and what happened when a person who didn’t know she had an ileostomy told her that ostomies were smelly. Listen all the way to the end to hear how Stephanie's advocacy in the ostomy community touched one family and gave them hope.

Information for topics discussed in this episode includes protectomy surgery, colectomy surgery, ileostomy surgery, changing an ostomy appliance, Enterostomal Therapy (ET) nurses, ostomy tips, and what’s normal with a stoma.

Find Stephanie Hughes on Facebook, Instagram, YouTube, Twitter, and on her blog, The Stolen Colon.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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Finding meaning in an illness journey can be a catalyst for purpose and hope. Dr Selvi Vasudevan endured severe Crohn’s disease that resulted in several surgeries and a relentless series of complications. She was on her chosen path when the disease stole her aspirations and left her without direction. A recommitment to herself and her own healing journey helped her find her purpose again as a healer and prompted her to found Cooking With Crohn’s in order to share what she’s learned with the IBD community.

Information discussed in this episode includes erythrocyte sedimentation rate (sed rate), normal white blood cell (WBC) count, bowel perforation, wound closing by secondary intention, and ileostomy surgery.

Find Dr Selvi on Facebook, Instagram, Twitter, and on her web site, DrSelvi.com.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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People who live with Crohn’s disease or ulcerative colitis have more to consider when it comes to the workplace. The cost of inflammatory bowel disease (IBD) means that a comprehensive insurance plan is a must, which may limit job choices. A flare-up or complication that results in absences can lead to poor performance reviews or difficulties with supervisors or co-workers. How can people with IBD cope? Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about missing work, being underinsured, and changing jobs while managing IBD.

Information discussed in this episode includes Clostridium difficile (C diff), pouchitis, Crohn’s and Colitis Foundation Help Center, IBD and the Americans With Disabilities Act, The Family and Medical Leave Act, and Financial Help for People with IBD.

Select pharmaceutical company assistance programs:

• Cimzia (certolizumab
• Entyvio (vedolizumab
• Humira (adalimumab
• Inflectra (infliximab biosimilar
• Remicade (infliximab)
• Renflexis (Infliximab biosimilar
• Simponi (goliumumab
• Stelara (ustekinumab
• Tysabri (natalizumab
• Xeljanz (tofacitinib

Find Megan Starshak on MeganStarshak.com, Twitter, and Instagram.

Find Tina Aswani Omprakash on Own Your Crohn’s, Facebook, Twitter, and Instagram.

Find Mary Elizabeth Ulliman on Instagram.

Find The Great Bowel Movement on Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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How does having Crohn’s disease or ulcerative colitis have an impact on your career? The symptoms of IBD, as well as the cost, can affect the ability to work in the same way as healthy people. Three women who live with IBD, Megan Starshak, Mary Elizabeth Ulliman, and Tina Aswani Omprakash, tell their stories about coping with college, first jobs, and career derailment as a result of their disease.

Information discussed in this episode includes Clostridium difficile (C diff) Infection, Short-Term Disability Insurance, Colectomy Surgery, J-pouch Surgery, and IBD and the Americans With Disabilities Act.

Find Megan Starshak on MeganStarshak.com, Twitter, and Instagram.

Find Tina Aswani Omprakash on Own Your Crohn’s, Facebook, Twitter, and Instagram.

Find Mary Elizabeth (Emmy) Ulliman on Instagram.

Find The Great Bowel Movement on Facebook, Twitter, and Instagram.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits:

Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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In December 2019 I went to Advances in IBD, which is a medical meeting that's focused entirely on Crohn's disease and ulcerative colitis. The understanding that IBD is more than a "bathroom disease" has finally hit home, and attendees (which include healthcare professionals such as nurses, dietitians, gastroenterologists, GI psychologists, and colorectal surgeons) were educated on a variety of topics. In this episode I provide some of the highlights of the meeting including sessions on diet, medication risks, and pregnancy.

Articles and information discussed in this episode include a discussion of absolute risk, "Don't Forget that 5-ASAs Also Have Side Effects: Recognizing Complications", "Diet, the Microbiome, and IBD: 'Doctor, what should I eat for my IBD?'," "Inflammatory Bowel Disease in Pregnancy Clinical Care Pathway: A Report From the American Gastroenterological Association IBD Parenthood Project Working Group," and "Episode 48: Summer of Activism - Getting Kids Involved in Activism."

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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This episode is sponsored by AbbVie.

How do you think about your connection with your gastroenterologist? The patient/physician relationship is important in managing inflammatory bowel disease. I talk with Dr. Aline Charabaty, Associate Professor of Medicine, Director of the IBD Center at Johns Hopkins Sibley Memorial Hospital, and winner of the 2019 Healio Gastroenterology Social Media Influencer Award, about how patients and doctors can better understand one another and better communicate about managing your disease. Find out how doctors can help patients in addition to finding the appropriate treatment for them, including what kinds of questions both groups should be asking, and how we can all move beyond “how many bowel movements” to discuss other issues important in Crohn’s disease and ulcerative colitis.

Want to get ahead of preparations for your next appointment? Try out the Doctor Discussion Guide at crohnsandcolitis.com/podcast

Find Aline Charabaty, MD on Facebook, Twitter, Instagram, and at Monday Night IBD.

Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram.

Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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Crohn’s disease and ulcerative colitis are diseases of young people. Women are often diagnosed during their childbearing years, which means that inflammatory bowel disease (IBD) enters into the equation when considering becoming pregnant. I talk with Beth Kiernan, a Teratogen Information Specialist at MotherToBaby about how women can learn more about how to manage IBD medications before conception, during pregnancy, and while breastfeeding.

Get in touch with the experts at Mother to Baby via email, phone (866-626-6847), or text (855-999-3525). Follow them on Facebook, Twitter, Pinterest, LinkedIn, YouTube, and Instagram. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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Being diagnosed with ulcerative colitis as a child and undergoing j-pouch surgery in high school hasn’t slowed Sneha Dave down at all. In fact, it spurred her to found two groups that are focused on bringing young people into the patient advocacy space: the Crohn's and Colitis Young Adults Network (CCYA) and the Health Advocacy Summit (HAS). Learn how Sneha grew the CCYA from its humble start as a newsletter, the opportunities that CCYA and HAS offer to young patients, and Sneha's secret to managing a work/life balance.

Find the Health Advocacy Summit at Facebook, Twitter, Instagram, and LinkedIn. Find the Crohn's and Colitis Young Adults Network at Facebook, Twitter, Instagram, LinkedIn, and YouTube. Find Amber J Tresca at AboutIBD.com, Verywell, Facebook, Twitter, Pinterest, and Instagram. Credits: Sound engineering courtesy Mac Cooney. "IBD Dance Party" ©Cooney Studio.

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Living with a permanent ileostomy as a result of Crohn’s disease hasn’t stopped Ryan Stevens from participating in the sport he loves. He worked his way back from crushing IBD flare-ups and multiple surgeries in order to train for the ultimate triathlon: the IRONMAN. In this second part of Ryan's story, hear what happened to him while on the bike route, why the ostomy may actually provide an advantage, and Amber’s unfiltered thoughts on the competitiveness of the triathlon community.

Find Ryan Stevens of IBD Swimming & Me at Facebook, Twitter, and Instagram.

Find Amber J Tresca of About IBD at Verywell Health, AboutIBD.com, Facebook, Twitter, Pinterest, and Instagram.

Credits:

• Additional sound engineering courtesy Mac Cooney
• "About IBD with Amber Tresca" ©Cooney Studio

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A diagnosis of Crohn’s disease and an ileostomy hasn’t stopped Ryan Stevens from competing in triathlon races. He swam through high school and college and was sidelined by Crohn’s just after falling in love with triathlon. He’s worked his way back twice from devastating flare-ups to get back to swim, bike, run, and now to the ultimate race: the IRONMAN. Come with us as we relive the IRONMAN Triathlon in Madison, Wisconsin and discuss how Ryan prepared and competed while living with IBD and a permanent ostomy.

Find Ryan Stevens of IBD Swimming & Me, at:

• Facebook: https://www.facebook.com/IBDSwimmer/
• Twitter: https://twitter.com/tumbledgray
• Instagram: https://www.instagram.com/rp_stevens/

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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Being diagnosed with inflammatory bowel disease (IBD) at any time or at any age is challenging. However, the pre-biologic era was especially difficult because of the lack of treatment options and the absence of some of the legal protections that are in place today. Danielle O’Connor tells her story of being diagnosed with ulcerative colitis at a young age and how she managed her career as a special education teacher through many hospitalizations and surgeries.

Concepts discussed in this episode:

• Family Medical Leave Act (FMLA): https://www.verywellfamily.com/understanding-family-medical-leave-act-4628330
• Affordable Care Act (ACA): https://www.verywellhealth.com/affordable-care-act-what-you-should-know-1738904
• Rectovaginal Fistula: https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356
• J-Pouch Surgery: https://www.verywellhealth.com/what-you-need-to-know-about-j-pouch-surgery-1942967

Find Danielle O'Connor at:

• Instagram: https://www.instagram.com/d_mvoc
• Twitter: https://twitter.com/Youcantmakethi4

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: https://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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People with IBD are often faced with unexpected challenges that are outside of those being experienced by their peer group. Jen Mcgregor of Crohnie Clothing found herself grappling with questions about her fertility while still in her early 20s. She had to act quickly in order to preserve her ability to have a biological child. Jen tells her personal story of working through the emotional, physical, financial, and even legal aspects of planning for her future fertility.

Find Jen Mcgregor of Crohnie Clothing at:

• Blog: https://crohnieclothing.com/
• YouTube: https://www.youtube.com/channel/UCHJBsqBLOFD0zDx9euyhLHQ
• Facebook: https://www.facebook.com/CrohnieClothing/
• Instagram: https://www.instagram.com/crohnieclothing/
• Twitter: https://twitter.com/crohnieclothing

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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Caregivers play an important role in the disease journey. For Rebecca Kaplan, whose husband, Dan, lives with Crohn’s disease, caregiving has been a large part of her life at times. When she went looking for support for herself as a caregiver, what she found was a need for more resources. She went on to not only create a support space for caregivers but also to take a leadership role in the inflammatory bowel disease community that benefits everyone who is touched by these diseases.

For more information:

• Sitz Bath
• Live Vaccines (Measles)
• Ally Bain and the Restroom Access Act
• Affordable Care Act on Rebecca’s Blog
• Pop Sockets at the Foundation

Find Rebecca Kaplan at:

• Twitter: https://twitter.com/RebeccaHKaplan

Find the Crohn’s and Colitis Foundation at:

• Website: http://www.crohnscolitisfoundation.org/
• Facebook: https://www.facebook.com/ccfafb/
• Twitter: https://twitter.com/CrohnsColitisFn
• Instagram: https://www.instagram.com/crohnscolitisfoundation/
• Need Help With Your IBD? Call Crohn’s & Colitis Foundation’s Help Line at 888-694-8872 or email info@crohnscolitisfoundation.org

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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In the final episode of my Summer of Activism Series, I asked Brooke Abbott of The Crazy Creole Mommy Chronicles to help us better understand Congressional Briefings. During Crohn’s and Colitis Awareness Week, she spoke at a briefing about IBD and minority health. It was an opportunity to bring awareness to this little-discussed factor of IBD and it presented some challenges and opportunities. Learn more about Congressional Briefings, how they are an important tool for advocacy groups, and how they have an impact on public policy. * See video of the Congressional Briefing on IBD & Population Health: https://www.facebook.com/ccfafb/videos/452493261950841/

Find Brooke Abbott of The Crazy Creole Mommy Chronicles at: * Blog: https://crazycreolemommy.com/ * Facebook: https://www.facebook.com/CrazyCreoleMama * Twitter: https://twitter.com/CrzyCreoleMommy/ * Instagram: https://www.instagram.com/crazycreolemama/

Find Amber J Tresca of About IBD at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutIBD/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credits: * Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney * "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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If you have the chance to speak on behalf of the inflammatory bowel diseases (IBD) community: would you take it? At first, volunteer and Crohn’s disease advocate Keri Flaccomio wondered if she had a right to attend a day on the hill event with the Crohn’s and Colitis Foundation and lobby in Washington DC on behalf of the IBD community. Her experiences while she was on the hill helped her to understand that not only did she have the right, but she also had a responsibility to tell her story — and the stories of others living with IBD. Learn how Keri made her hill meetings more effective and how they helped her to become empowered as an activist. Find Keri Ann Flaccomio at: * Tumblr: https://mygutfeelings.tumblr.com/ * Website: http://www.keriannflaccomio.com/ * Instagram: https://www.instagram.com/keriannecdotes * Twitter: http://www.twitter.com/keriannecdotes * LinkedIn: https://www.linkedin.com/in/keriannflaccomio/

Find Amber J Tresca of About IBD at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutIBD/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credits: * Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney * "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it’s important to her, how she navigates the day with mobility issues, and why the experience is empowering.

Download your FREE copy of the new single, "IBD Dance Party," by signing up for the About IBD newsletter here: http://aibdnewsletter.aboutibd.com/music

Find Jaime Holland of Pretty Rotten Guts at:

• Blog: http://prettyrottenguts.tumblr.com/
• Twitter: https://twitter.com/JaimeEditor
• Instagram: https://www.instagram.com/slightlyjaided/
• YouTube: http://po.st/prKAKf

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
"About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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How does an IBD patient attend Day on the Hill events and meet with the offices of congressional representatives in Washington DC? What is it like to go to these events? In this episode I describe how I got involved in hill day meetings, why I do it, and what the process is like to attend. I also offer you my tips on how to make the best of the time spent in the capital in order to make the biggest impact on the people who can affect change in the lives of IBD patients. How to Get Involved: * Crohn’s and Colitis Foundation—Be an Advocate: https://www.crohnscolitisfoundation.org/get-involved/be-an-advocate * International Foundation for Gastrointestinal Disorders—Advocate for Digestive Health: https://www.iffgd.org/advocate-for-digestive-health.html * United Ostomy Associations of America—Advocates for a Positive Change: https://www.ostomy.org/advocacy/

Find Amber J Tresca of About IBD at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutIBD/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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How young is "too young" to get kids involved in activism? Gastroenterologist and activist Dr Meenakshi Bewtra started her kids on their activism journey at birth and continues by bringing them to marches, voter registration events, and postcard writing parties. Dr Bewtra shares her tips on how you can involve your kids in activism, why you should, and how it might make your life as a parent — and activist — a bit easier.

Find Meenakshi Bewtra, MD, MPH at:

• Twitter: https://twitter.com/DrsMeena
• Penn Medicine: https://www.pennmedicine.org/providers/profile/meenakshi-bewtra

Find Amber J Tresca of About IBD at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutIBD/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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Working with our local elected officials is important to having our voices heard. But attending local town hall meetings held by state or federal congressional representatives is daunting, especially if you’ve never done it before. Shawntel Bethea of Chronically Strong describes her journey from sending an email to asking for support from her Congresswoman at a meeting in her district. She gives her tips on how you can make an impact in your community for people living with IBD.

Find Shawntel Bethea of Chronically Strong, at:

• Blog: https://chronicallystrong.com/
• YouTube: https://www.youtube.com/channel/UCrklcLJ7FvGtN-fOvJJM-jQ
• Facebook: https://www.facebook.com/chronicallystrongblog/
• Twitter: https://twitter.com/shawnbethea_
• Instagram: https://www.instagram.com/chronicallystrongblog/

Find Amber J Tresca of About IBD at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutIBD/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Credits:

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney
• "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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For this first episode of my limited series, Summer of Activism, I’m answering a question that I hear regularly: how it is that I go to medical meetings such as Digestive Disease Week, Advances in IBD, or Crohn’s and Colitis Congress. I give you the answer as well as tips on how patients, bloggers, podcasters, and vloggers can work towards attending these, and other, scientific meetings. Here’s a spoiler: it takes dedication to improving the lives of people with IBD, commitment to doing the work consistently, and some professional networking.   Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutIBD/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credit: * "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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What’s new in inflammatory bowel disease (IBD) treatments and what’s next on the horizon? Dr Peter Higgins, a gastroenterologist, IBD specialist, and researcher at the University of Michigan discusses what’s new in IBD from the Crohn’s and Colitis Congress meeting in 2019. We talk fecal transplants, healing strictures in the intestines, and the feasibility of custom ostomy products. It’s a conversation about cutting edge research on Crohn’s disease and ulcerative colitis mixed with the practicality of using these treatments in the real world.

Concepts and ideas discussed: * Fecal transplants: https://www.verywellhealth.com/fecal-bacteriotherapy-fb-1942426 * Stem cells for IBD: https://www.everydayhealth.com/digestive-health/are-stem-cells-the-key-to-fighting-ibd.aspx * Precision medicine for pediatric patients: https://www.crohnscolitisfoundation.org/news/Pediatric-RISK * Preclinical Human IBD Mechanisms: https://www.crohnscolitisfoundation.org/research/challenges-ibd/preclinical-human-ibd-mechanisms * 3-D printing for ostomy: https://healthblog.uofmhealth.org/digestive-health/how-3-d-printing-makes-ostomy-more-personal-and-less-problematic

Find Dr Peter Higgins at: * Bio: http://www.med.umich.edu/higginslab/pdrhBio.html * Twitter: https://twitter.com/ibddoctor * U of M IBD School: https://www.youtube.com/user/higgi13425 * University of Michigan IBD Team: https://www.facebook.com/UMIBD/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Credits: Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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Does having inflammatory bowel disease (IBD) make you feel like a princess? Crohn’s disease and ulcerative colitis are not only painful, serious conditions, but they also carry stigma which leads to patients feeling isolated. Sophia Vicari, the founder of The Princess Promise, is creating a community that challenges the perception society has about digestive disease. Diagnosed with ulcerative colitis while in college, it didn’t take long before Sophia decided she needed to work to help others in the IBD community become more comfortable talking about poop. Hear Sophia’s disease journey, what it was like for her to be Miss Camden County, NJ, while living with ulcerative colitis, and how she plans to help women with IBD find their inner princess. Find Sophia Vicari and the Princess Promise at: * Facebook: https://www.facebook.com/theprincesspromise/ * Instagram: https://www.instagram.com/theprincesspromise/ * Blog: https://theprincesspromise.wixsite.com/theprincesspromise * YouTube: https://www.youtube.com/channel/UCsxdtty50NGi6fPSOWcYqhA

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering and editing courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" ©Cooney Studio http://cooneystudio.com/

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Every person that lives with Crohn’s disease or ulcerative colitis in the United States knows the challenges of dealing with health insurance companies. Denials of service are common, particularly when diagnostic tests are ordered or when a new drug is prescribed. A change in insurance carrier, which can come after a life event (such as getting married or changing jobs) or at the start of the calendar year is another time when patients may find themselves in the appeal process in order to get needed tests or medication. For Jaime Holland, a life change, an insurance change, a calendar year change, and a change in gastroenterologist culminated in her being in danger of not receiving her biologic medication on time. Hear Jaime tell the story of how the problem started, why she had to look to someone outside her physicians office and her insurance carrier to get it solved, and her tips to help you avoid similar insurance snafus. This episode is perfect not only for anyone living with inflammatory bowel disease (IBD) but also anyone who cares for those living with these diseases.

Find Jaime Weinstein at: Blog: http://prettyrottenguts.tumblr.com/ Twitter: https://twitter.com/JaimeEditor Instagram: https://www.instagram.com/slightlyjaided/ YouTube: http://po.st/prKAKf Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http://aboutibd.com/ Facebook: https://www.facebook.com/ibdcrohns/ Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/ Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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Living with Crohn’s disease or ulcerative colitis may have a significant affect on intimate relationships. The reasons for this are as individual as we are but can include pain, fatigue, medication side effects, and problems with body image. Kait Scalisi, an NYC-based sex educator who founded Passion by Kait, has devoted her professional life to helping women and couples learn to reconnect with themselves and their partner in order to enhance intimacy and reconnect with pleasure. Kait lives with Crohn’s disease and ankylosing spondylitis, and therefore has a deep understanding of how chronic conditions can affect intimate relationships (both with oneself and with a partner). Hear Kait’s Crohn’s disease journey and learn how she helps people find their way back to enjoying their spark, both in the bedroom and outside of it. Find Kait Scalisi at: * Web site: https://passionbykait.com/ * Facebook: https://www.facebook.com/PassionbyKait/ * Instagram: https://www.instagram.com/passionbykait/ * Twitter: https://twitter.com/passionbykait * YouTube: https://www.youtube.com/user/PassionbyKait * Pinterest: https://www.pinterest.com/passionbykait/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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Many young people who are undergoing ileostomy surgery to treat Crohn’s disease or ulcerative colitis have never met another younger person with an ostomy. Gaylyn Henderson, founder of Gutless and Glamorous, wants to make sure that people living with inflammatory bowel disease (IBD) don’t experience the uncertainty and stigma that she encountered before her ostomy surgery. In between running a successful foundation and a support group for people with chronic illness, Gaylyn has also become a spokeswoman for people with an ostomy, proving that her ileostomy is not a barrier to success. Concepts and ideas discussed on this episode: * Crohn’s colitis: https://www.verywellhealth.com/what-is-crohns-colitis-1942589 * Proctectomy: https://www.verywellhealth.com/proctectomy-surgery-for-inflammatory-bowel-disease-4122490 * Ileostomy: https://www.verywellhealth.com/what-you-need-to-know-about-ileostomy-surgery-1942936 * Stricture: https://www.verywellhealth.com/what-is-the-lumen-1942954 * Avascular necrosis: https://www.verywellhealth.com/facts-about-osteonecrosis-189426

Find Gaylyn Henderson at: * Blog: https://www.gutlessandglamorous.org * Facebook: https://www.facebook.com/GutlessandGlamorous/ * Twitter: https://twitter.com/GutlessGlamour * Instagram: https://www.instagram.com/gutlessandglamorous/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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People who live with Crohn’s disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play.Tina Aswani Omprakash, who lives with Crohn's disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why she decided to become an outspoken advocate for the IBD and ostomy communities and start her blog, Own Your Crohn’s.

Concepts discussed on this episode:

• Pouchitis: https://www.verywellhealth.com/what-is-pouchitis-in-a-jpouch-1942974
• Rectovaginal fistula: https://www.verywellhealth.com/rectovaginal-fistula-overview-4587356
• Perianal disease: https://www.verywellhealth.com/what-is-the-perianal-area-1942412
• J-pouch: https://www.verywellhealth.com/before-during-and-after-j-pouch-surgery-4137938
• Ileostomy: https://www.verywellhealth.com/what-you-need-to-know-about-ileostomy-surgery-1942936
• Step therapy: https://www.crohnscolitisfoundation.org/get-involved/be-an-advocate/steptherapy/
• Abscess: https://www.verywellhealth.com/perirectal-abscess-2328821
• Pyoderma gangrenosum: https://www.verywellhealth.com/pyoderma-gangrenosum-skin-disorder-1943016
• Erythema nodosum: https://www.verywellhealth.com/erythema-nodosum-1943012

Find Tina Aswani Omprakash at:

• Blog:http://ownyourcrohns.com/
• Facebook:https://www.facebook.com/ownyourcrohns/
• Twitter:https://twitter.com/ownyourcrohns
• Instagram:https://www.instagram.com/ownyourcrohns/

Find Amber J Tresca at:

• Verywell:https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog:http://aboutibd.com/
• Facebook:https://www.facebook.com/aboutibd
• Twitter:https://twitter.com/aboutIBD
• Pinterest:https://www.pinterest.com/aboutibd/
• Instagram:https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/
"About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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How does IBD affect your family? Do you know about the tools and resources that are available to help you on your disease journey? On this episode of About IBD, I talk with the Director of Patient Education and Support at the Crohn’s and Colitis Foundation, Catherine Soto, who outlines the many tools the Foundation provides for anyone with IBD, including those made just for parents, kids, and teens. I also spoke with Dr Rajeev Jain, who tells me about a new, one-of-a-kind resource for women with IBD who want to be mothers, called the IBD Parenthood Project. And finally I called upon Brooke Abbott, co-founder of IBD Moms, to talk about her role as a patient in developing the IBD Parenthood Project, and she entertains me with a small rant about social media.

1:50 - Cathrine Soto, Director, Patient Education & Support at Crohn's & Colitis Foundation, talks about resources available for kids, teens, and parents 24:21 - Dr Rajeev Jain of Texas Digestive Disease Consultants talks about the IBD Parenthood Project 35:35 - Brooke Abbott, the Crazy Creole Mommy and co-founder of IBD Moms, gives the patient perspective on the IBD Parenthood Project Concepts and ideas discussed in this episode:

• Resources From the Crohn’s and Colitis Foundation:
  • Camp Oasis: https://www.crohnscolitisfoundation.org/get-involved/camp-oasis
  • Help Center: https://www.crohnscolitisfoundation.org/living-with-crohns-colitis/talk-to-a-specialist
  • Just Like Me: http://justlikemeibd.org
  • Quiz My IBD: http://www.ibdskillsquiz.org
  • Campus Connection: https://www.crohnscolitisfoundation.org/campus-connection/
  • Crohn’s & Colitis Community: https://www.crohnscolitiscommunity.org/
• The IBD Parenthood Project: http://www.ibdparenthoodproject.gastro.org/

Find Dr Rajeev Jain at:

• Texas Digestive Disease Consultants: https://tddctx.com/staff/dr-rajeev-jain/
• Twitter: https://twitter.com/rajster

Find IBD Moms at:

• Facebook: https://www.facebook.com/IBDMoms/
• Twitter: https://twitter.com/ibdmoms
• Instagram: https://www.instagram.com/ibdmoms/<

Find Brooke Abbott, The Crazy Creole Mommy Chronicles, at:

• Blog: https://crazycreolemommy.com/
• Facebook: https://www.facebook.com/CrazyCreoleMama
• Twitter: https://twitter.com/CrzyCreoleMommy/
• Instagram: https://www.instagram.com/crazycreolemama/

Find Amber J Tresca at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutibd
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney

"About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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It’s common for people with IBD to look online for patients who have a similar disease journey to their own. For men, however, there are fewer places to find such a peer because there are not as many men in the IBD influencer space as there are women. That’s where Rasheed Clarke, author of Three Tablets Twice Daily, blogger, and ulcerative colitis and j-pouch patient steps in. Hear Rasheed contrast how his running career is different before and after j-pouch surgery, his thoughts on being one of the few male voices in the online IBD community, how we can encourage more men to share their journey, and the wild and wonderful thing he did with a toilet for World IBD Day in 2017.

Concepts and ideas discussed in this episode:

• J-pouch surgery: https://www.verywellhealth.com/what-you-need-to-know-about-j-pouch-surgery-1942967
• Colectomy surgery: https://www.verywellhealth.com/types-of-colectomy-surgery-1943059
• Exercise and IBD: https://www.verywellhealth.com/exercising-with-ibd-4582068
• World IBD Day: https://worldibdday.org

Find Rasheed Clarke at:

• Blog: https://rasheedclarke.com
• Twitter: https://twitter.com/rasheedclarke
• Instagram: https://www.instagram.com/rasheedclarke/
• Facebook: https://www.facebook.com/rasheedclarke

Find Amber J Tresca at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/aboutibd
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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What compels a person to share their personal journey with IBD? For Rasheed Clarke, author of Three Tablets Twice Daily, his writing began as a way to keep track of everything for himself and his healthcare team. It quickly turned into a tool that he used to show those around him the stark realities of a life with IBD: bloody diarrhea and all. His coworkers and friends were shocked to learn how much he was coping with every day but not everyone close to him approved of his honesty. On this episode of About IBD, Rasheed digs into the positives, the negatives, and the responsibilities that come with being an influencer in the IBD space.

Find Rasheed Clarke at: * Blog: https://rasheedclarke.com * Twitter: https://twitter.com/rasheedclarke * Instagram: https://www.instagram.com/rasheedclarke/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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What is the microbiome, how might it be connected to IBD and other conditions, and how can it affect health when it's pushed out of balance? Dr Sarina Pasricha of the Christiana Care Health System gives me the scoop on how the microbiome is created when we are young and how it changes with our activities and diet, as well as why we should not try fecal transplants at home, and how a little bit of dirt is good for our kids. Concepts and ideas discussed in this episode: * Christiana Care Health System 2nd Annual GI Symposium: https://events.christianacare.org/event/gi-symposium-2018/ * The American Gut Project: http://americangut.org/ * Fecal Bacteriotherapy (FB): https://www.verywellhealth.com/fecal-bacteriotherapy-fb-1942426 * DINE-CD research study: http://dinecd.web.unc.edu/

Find Sarina Pasricha, MD, MSCR at: * Facebook: https://www.facebook.com/DocSarina/ * Instagram: https://www.instagram.com/docsarina/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

"About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/ After completing her undergraduate training in biological anthropology and nutrition from Harvard University, Dr. Pasricha attended Northwestern Feinberg School of Medicine for medical school. She subsequently completed her residency and fellowship at the University of North Carolina where she also received a Masters of Science in Clinical Research. She has published extensively in the most respected gastroenterology journals and has given more than 30 national presentations. In addition to receiving numerous teaching awards, she has received prestigious awards from the Howard Hughes Medical Institute and the National Institutes of Health. Dr. Pasricha’s research background will allow her to best use evidence-based medicine to individually treat her patients. Dr. Pasricha’s clinical interests include, but are not limited to, prevention of colon cancer, evaluation and treatment of gastroesophageal reflux disease and esophageal cancer, and women’s wellness and health with a focus on integrative gastroenterology. She has completed additional subspecialty training in motility disorders with a focus on esophageal motility, constipation, fecal incontinence, and prevention and non-surgical treatment of hemorrhoids. Dr. Pasricha is a native of Delaware and is an alumnus of Sanford School. She resides in Delaware with her husband and two daughters.

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A diagnosis of IBD can take away the thing that you feel defines you as a person. This is how it felt for Megan Starshak of The Great Bowel Movement, who describes how her ulcerative colitis diagnosis at age 18 stole her passion for running. The process of losing and then regaining her identity as a runner fueled her desire to help people live well with a diagnosis of IBD. Her foundation seeks to educate those outside the IBD community through the use of a simple conversation prompt: Ask Me About My IBD.

Find The Great Bowel Movement at: * Web site: https://thegreatbowelmovement.org/ * Facebook: https://www.facebook.com/TheGreatBM/ * Twitter: https://twitter.com/TheGreatBM * Instagram: https://www.instagram.com/TheGreatBM/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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The internet runs on advertising, which means that editors and writers are often tasked with getting the most possible eyeballs on their story. That can mean that there’s pressure to write a controversial or sensational headline to get those clicks. In this episode, I invite experienced medical writer and university instructor, Shereen Lehman, to weigh in and tell you how to figure out if a story about IBD is good reporting — or if it’s crap. Articles on critical thinking and research: * Should IBD Patients Look To Mouse Studies For Hope?: http://aboutibd.com/2015/02/27/should-ibd-patients-look-to-mouse-studies-for-hope/ * 5 Keys to Uncovering Poor IBD Information Online: http://aboutibd.com/2018/03/26/5-keys-to-uncovering-poor-ibd-information-online/ * Why You Can’t Trust “Dr Google”: http://aboutibd.com/2016/08/08/why-you-cant-trust-dr-google/ * Why Not Every Study on IBD Is a Breakthrough: https://www.verywellhealth.com/why-not-every-study-on-ibd-is-a-breakthrough-4099015

Find Introvert’s Retreat at: * Web: https://introvertsretreatbox.com/ * Facebook: https://www.facebook.com/introvertsretreatbox/ * Instagram: https://www.instagram.com/introvertsretreatbox/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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I wanted to let you know what’s happening in the About IBD world and how you can stay in touch and keep up with all the great progress that’s happening! Find IBD Moms at: * Facebook: https://www.facebook.com/IBDMoms/ * Twitter: https://twitter.com/ibdmoms * Instagram: https://www.instagram.com/ibdmoms/

Find National Ulcerative Colitis Alliance (NUCA) at: * Take the survey! https://nuca.life/about-nuca/nuca-survey/ * Blog: https://nuca.life/did-uc-blog/ * Facebook: https://www.facebook.com/NUCALife/ * Twitter: https://twitter.com/nuca_life * Instagram: https://www.instagram.com/about_IBD/ * LinkedIn: https://twitter.com/NUCALife

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

"About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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Why is it important to tell our stories? Every person who has IBD is unique and so is their disease journey. You might not think your experience is relevant to others living with IBD or another chronic condition, but it is, in many ways. A story can provide validation and hope while helping put the reality of life with IBD in perspective. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms and I continue our discussion of how we can support others with IBD through telling our stories and listening to yours. Find Brooke Abbott, The Crazy Creole Mommy Chronicles at: * Blog: https://crazycreolemommy.com/ * Facebook: https://www.facebook.com/CrazyCreoleMama * Twitter: https://twitter.com/CrzyCreoleMommy/ * Instagram: https://www.instagram.com/crazycreolemama/

Find IBD Moms at: * Facebook: https://www.facebook.com/IBDMoms/ * Twitter: https://twitter.com/ibdmoms * Instagram: https://www.instagram.com/ibdmoms/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family’s Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke's recipes! Find Brooke Abbott, The Crazy Creole Mommy Chronicles at: * Blog: https://crazycreolemommy.com/ * Facebook: https://www.facebook.com/CrazyCreoleMama * Twitter: https://twitter.com/CrzyCreoleMommy/ * Instagram: https://www.instagram.com/crazycreolemama/

Find IBD Moms at: * Facebook: https://www.facebook.com/IBDMoms/ * Twitter: https://twitter.com/ibdmoms * Instagram: https://www.instagram.com/ibdmoms/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

• Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/
• "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

Brooke’s Jambalaya Recipe I cook my rice separately than the meat & broth. Then combine them together. This is the non-spicy version of cajun jambalaya. If you want it spicy you can add crushed red pepper or andouille sausage. * Boneless Chicken Breast or Thighs * Raw Shrimp w/out the tail * Smoke Sausage * Ham * White Onion * Fresh Garlic * Bell Pepper * Canned Diced Tomatoes * Bay Leaf * Green Onion * Parsley * Olive Oil * Lemon Pepper * Garlic Powder * Salt * Black Pepper * Tony Chachere Creole Seasoning

Directions: Use a large stewing pot to cook in and another pot for rice. Season the chicken and shrimp separately with lemon pepper, garlic powder, salt, and Tony’s Chachere Creole Seasoning. Dice onion, garlic, and bell pepper together. Cover the bottom of the pot in a layer of olive oil. Place chicken in and brown on all sides. Remove chicken, dice, and set aside. Add the trifecta of garlic, onions, and peppers to the pot and brown. Add diced ham and sliced smoked sausage. Mix in a can of diced tomatoes and a bay leaf. Add salt and black pepper. Add chicken back in. Simmer. Stir in shrimp. Simmer again for 20 minutes. Add cooked rice and mix together. Garnish with sliced green onion and chopped parsley. Brooke’s Christmas Spaghetti You can use any kind of pasta with the sauce. * Ground Turkey or Beef * Smoked Sausage * Pete’s Hot Sausage or Andouille Sausage * Shrimp * Ham * Canned Peeled Tomato * Onion * Garlic * Bell Pepper * Tomato Sauce * Salt * Pepper * Oregano * Tony Chachere Creole Seasoning * Better than Bouillon Chicken * Olive Oil

Directions:
In a large stew pot brown the ground meat. Once cooked through, add the onions, garlic, and bell pepper. Add ham and smoked sausage. If adding a spicy sausage like Pete’s Sausage or andouille, brown those in separate pan and then add to the mixture Add canned peeled tomato and mash into large pieces. Mix in the tomato sauce. Add a teaspoon of Better than Bouillon Chicken. Season with Oregano, salt, and pepper. Mix all together and simmer. Pour over your choice of pasta.

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Dating can be challenging for anyone at any stage in life, but having IBD and/or other chronic conditions adds another level of difficulty that can be disconcerting. Angela Cohen was diagnosed with Crohn’s disease after her intestine perforated. Her long-term relationship ended not long after and she was thrust into the dating world. What she discovered while going on more than a few "first dates” was illuminating not only about how IBD and other autoimmune conditions are perceived by potential partners but also about herself and what she wants to get out of dating, as well as her life goals. Concepts mentioned in this episode: * What Is Postural Orthostatic Tachycardia Syndrome?: https://www.verywellhealth.com/postural-orthostatic-tachycardia-syndrome-pots-1746386 * Diagnosing And Treating Dysautonomia: https://www.verywellhealth.com/dysautonomia-diagnosis-and-treatment-1746402

Find Angela Cohen at: * Twitter: https://twitter.com/angelee828 * Instagram: https://www.instagram.com/ange_lee_me/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/ibdcrohns/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

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Even when you’re knowledgeable about IBD, it can still sneak up on you and skew your perception of how much control the disease has over your life. Angelica Catalano, Director of Media Partnerships at The Mighty, describes how ulcerative colitis has affected her since her diagnosis at the age of 6, and how she was living with symptoms on a daily basis. Emergency surgery shook her world, prompting her to make a change in her treatment program to prevent future IBD-related complications. Through her work at The Mighty, Angelica pursues her passion of helping people with chronic illness improve their quality of life by bringing them together with the nonprofits that provide support and resources. IBD topic areas on The Mighty: Crohn’s disease: https://themighty.com/topic/crohns-disease/ Ulcerative colitis: https://themighty.com/topic/ulcerative-colitis/ Find The Mighty at: * Facebook: https://www.facebook.com/TheMightySite/ * Twitter: https://twitter.com/TheMightySite * Instagram: https://www.instagram.com/themightysite/ * Pinterest: https://www.pinterest.com/themightysite/ * App Store: https://itunes.apple.com/us/app/the-mighty/id1432324582

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/ibdcrohns/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Additional sound engineering courtesy Mac Cooney, https://www.facebook.com/michaelandrewcooney/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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What have you done when you couldn’t get anyone to take the symptoms of IBD seriously and you found yourself out of options? For Meredith, the road to a Crohn’s disease diagnosis was long and so frustrating that she wound up pleading for help from a specialist she’d never met. Going online to connect with other patients also took Meredith to places both light and dark, and she, Jaime, and I sort through our various experiences with social media as well as how we can work towards creating more hopeful content for new IBD patients in the future. Concepts mentioned on this episode: What Are Mast Cells?: https://www.verywellhealth.com/what-are-mast-cells-1944889 What Is Gastroparesis?: https://www.verywellhealth.com/what-is-gastroparesis-1741788 Find Meredith Smolen at: * Facebook: https://www.facebook.com/ShearTruth/ * Instagram: https://www.instagram.com/mere282/ * Twitter: https://twitter.com/been_foiled

Find Jaime Weinstein at: * Blog: http://prettyrottenguts.tumblr.com/ * Twitter: https://twitter.com/JaimeEditor * Instagram: https://www.instagram.com/slightlyjaided/ * YouTube: http://po.st/prKAKf

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/aboutibd/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

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Is it possible to take the diagnosis that turned your world upside down and turn it into a positive force in your life? My guest on About IBD is Lilly Stairs, Head of Patient Advocacy at Clara Health who lives with Crohn’s disease did exactly that. First diagnosed with psoriatic arthritis, it was only after Lilly’s symptoms weren’t improving and she was in and out of the hospital that healthcare providers finally discovered a Crohn’s disease flare-up in her small bowel. Lilly found the right mix of treatments to get her Crohn’s under control and now works with her team at Clara to connect patients to clinical trials. Find Lilly Stairs at * Blog: https://www.lillystairs.com/ * Twitter: https://twitter.com/LillyStairs * Instagram: https://www.instagram.com/lillyrosestairs/ * LinkedIn: https://www.linkedin.com/in/lillystairs/ * Facebook: https://www.facebook.com/lilly.stairs.56

Find Clara Health at: * Twitter: https://twitter.com/Clara_Health * Instagram: https://www.instagram.com/clarahealth/ * LinkedIn: https://www.linkedin.com/company/clara-health * Facebook: https://www.facebook.com/clarahealth * Patients Have Power Podcast: https://itunes.apple.com/us/podcast/patients-have-power/id1321097377?mt=2

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What is your favorite week of the year? For the kids, counselors, and volunteers at Camp Oasis, their favorite is camp week. Learn more about a summer camp that’s designed especially for kids who have IBD but is also the place where the campers actually feel the most freedom from their disease. Amber visited camp on visitor’s day and talked with campers, leaders in training, and counselors to find out what makes Camp Oasis so special to them. * Find out more about Camp Oasis: http://www.crohnscolitisfoundation.org/get-involved/camp-oasis/ * Find Camp Oasis locations: http://www.crohnscolitisfoundation.org/get-involved/camp-oasis/find-a-camp/ * Crohn’s & Colitis Foundation: http://www.crohnscolitisfoundation.org/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/ibdcrohns/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

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What happens when a diagnosis of Crohn’s disease stands between you and your chosen career? This is exactly the barrier that veteran journalist and news anchor Natalie Hayden faced in the early days after her IBD diagnosis. Her decision was to gather her support system around her and get camera ready. Find out how she made it as a morning news anchor, found the love of her life, started her family, and founded Lights, Camera, Crohn’s. Find Natalie Hayden at: * Blog: https://lightscameracrohns.com/ * Twitter: https://twitter.com/nataliesparacio * Facebook: https://www.facebook.com/natalieasparacio/ * Instagram: https://www.instagram.com/natalieannhayden

Concepts, ideas, and advocates discussed on this episode: * Intestinal Blockage: https://www.verywellhealth.com/intestinal-complications-of-ibd-1943043 * Anal or Rectal Abscess: https://www.verywellhealth.com/perirectal-abscess-2328821 * Resection Surgery: https://www.verywellhealth.com/resection-surgery-for-crohns-disease-1943058 * The Potential Effects of IBD on Female Fertility: https://www.verywellhealth.com/effects-of-ibd-on-female-fertility-4126690 * Sara Ringer, Inflamed and Untamed: http://www.inflamed-and-untamed.com/ * Brooke, Crazy Creole Mommy: https://crazycreolemommy.com/ * Eric, Vegan Ostomy: https://www.veganostomy.ca/ * Christy, Crohnie Bologna: https://www.crohniebolognaibd.com/ * Stephanie, The Stolen Colon: http://stolencolon.com/ * Dan Sharp: http://dansharpibd.org/

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/ibdcrohns/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

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How does IBD impact the family? Couples who are thinking about having children when one or both of them have IBD often have questions about how the disease will affect their family. Amber interviews her 8-year-old daughter and 10-year-old son about how IBD does — and doesn’t — affect their lives.

Find Amber J Tresca at: * Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 * Blog: http://aboutibd.com/ * Facebook: https://www.facebook.com/ibdcrohns/ * Twitter: https://twitter.com/aboutIBD * Pinterest: https://www.pinterest.com/aboutibd/ * Instagram: https://www.instagram.com/about_IBD/

Find IBD Moms at:

• Facebook: https://www.facebook.com/IBDMoms/
• Twitter: https://twitter.com/ibdmoms
• Instagram: https://www.instagram.com/ibdmoms/

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With an invisible illness such as IBD, it can be challenging to protect your quality of life. Patient influencers often push themselves in the service of others and that may seem strange to those that follow along on social media. How can someone be so sick and yet be able to attend a medical conference? Sara Ringer of Inflamed and Untamed explains how what you see online can be misleading and how she manages two difficult digestive diseases, all while striving to live a fulfilling life that includes being a resource for other patients seeking information and support.

Concepts and ideas shared on this episode:

• Intestinal Pseudo-Obstruction: https://www.verywellhealth.com/intestinal-pseudo-obstruction-1942429
• What You Need to Know About J-Pouch Surgery: https://www.verywellhealth.com/what-you-need-to-know-about-j-pouch-surgery-1942967
• Pouchitis After IPAA Surgery: https://www.verywellhealth.com/what-is-pouchitis-in-a-jpouch-1942974
• Nasogastric (NG) Tubes and IBD: https://www.verywellhealth.com/nasogastric-ng-tube-1943087
• What Is Fluoroscopy?: https://www.verywellhealth.com/what-is-fluoroscopy-1191847

Find Sara Ringer at:

• Blog: http://www.inflamed-and-untamed.com/
• YouTube: https://www.youtube.com/channel/UC8JiwUtq1N6XW4LWfuII5xg
• Instagram: https://www.instagram.com/sara_ringer/
• Facebook: https://www.facebook.com/Inflamed.Untamed
• Twitter: https://twitter.com/Sara_Ringer
• Pinterest: https://www.pinterest.com/Sara_Ringer/

Find Amber J Tresca at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/ibdcrohns/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

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How can we help new ostomates better adjust to their stoma? Megan Johnson, who you might better know as The Front Butt YouTuber, had a unique journey on the way to becoming a permanent ileostomate due to Crohn’s disease. Her experiences with the abysmal patient education material in the hospital after ostomy surgery sparked her desire to make accessible content that helps people adjust after surgery and “be comfortable in their own skin.”

This episode was recorded on location at HealtheVoices in Chicago, under challenging conditions, which is why the audio is less than pristine, but the content is extraordinarily compelling. Stick with it, and you’ll be glad you did!

Megan Johnson, The Front Butt YouTuber at:

• YouTube: https://www.youtube.com/user/TheFrontButttuber
• Blog: https://thefrontbuttyoutuber.wordpress.com/
• Facebook: https://www.facebook.com/thefrontbuttyoutuber/
• Twitter: https://twitter.com/FrontButtYouTR/
• Instagram: https://www.instagram.com/the_front_butt_youtuber/

Find Amber J Tresca at:

• Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703
• Blog: http://aboutibd.com/
• Facebook: https://www.facebook.com/ibdcrohns/
• Twitter: https://twitter.com/aboutIBD
• Pinterest: https://www.pinterest.com/aboutibd/
• Instagram: https://www.instagram.com/about_IBD/

"About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

Additional audio engineering courtesy Mac Cooney https://www.facebook.com/michaelandrewcooney/

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It’s estimated that half of people who have an inflammatory bowel disease (IBD) try complementary and alternative medicine to treat their disease. Eric Polsinelli of Vegan Ostomy describes how he tried dozens of complementary therapies for his Crohn’s disease but never found anything that worked. He did, however, come away with vital insight about how people living with IBD can assess alternative therapies and talk to their physicians about working them into a comprehensive treatment plan. Find Eric Polsinelli, of Vegan Ostomy, at: Blog: https://www.veganostomy.ca/ YouTube: https://www.youtube.com/c/veganostomy/ Facebook: https://www.facebook.com/Veganostomy/ Twitter: https://twitter.com/veganostomy Instagram: https://www.instagram.com/vegan_ostomy/ Ostomeme: https://www.ostomeme.com Find Amber J Tresca at: Verywell: https://www.verywell.com/ibd-crohns-colitis-4014703 Blog: http://aboutibd.com/ Facebook: https://www.facebook.com/aboutibd/ Twitter: https://twitter.com/aboutIBD Pinterest: https://www.pinterest.com/aboutibd/ Instagram: https://www.instagram.com/about_IBD/ "About IBD with Amber Tresca" © Cooney Studio http://cooneystudio.com/

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