Bowel Moments: Recent Episodes

Alicia Barron and Robin Kingham

Real talk about the realities of IBD...On the rocks! Hosts Robin and Alicia interview people living with Crohn's disease, ulcerative colitis, or indeterminate colitis (collectively knows as Inflammatory Bowel Diseases or IBD) and the medical providers who care for our community. Join us to meet people affected by IBD- we laugh, we cry, we learn new things, we hear inspiring stories, and we share a drink.

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Welcome to episode 1 of our series- IBD Can Eat Me guest hosted by Stacey Collins, IBD RD. In this series, Stacey will interview other Dietitians who also specialize in IBD. This week we welcomed Venus Kalami- board-certified pediatric Dietitian Nutritionist!

What if the strict diet you’re told to follow does more harm than good? We sit down with pediatric dietitian Venus to unpack how nutrition in IBD can support health without sacrificing joy, culture, or family life. From Stanford Children’s IBD and celiac center to medical affairs and public education, Venus brings a rare mix of clinical depth and human warmth—and she doesn’t shy away from hard truths.

We dig into the pressure families feel to “do everything,” the overuse of restrictive therapeutic diets, and the real risks that come with them: malnutrition, ARFID, pediatric feeding disorders, and lasting food trauma. Venus shares a clear way to tell the difference between a transient food reaction and an inflammatory flare, helping patients step off the rollercoaster of fear and over-correction. She also shows how to make care culturally inclusive with simple, powerful questions: What do you like? What do you cook? What feels doable at home? It’s a move from generic handouts to plans that honor heritage foods and real life.

You’ll hear a vivid case study where a patient referred for low FODMAP improved dramatically without elimination—just lactase with dairy, spreading fruit across the day, and changing other patterns developed from past food trauma. We talk about involving mental health early, “asking around the ask” when supplements come up, and borrowing pediatric best practices for adults who shouldn’t have to navigate IBD alone. The theme running through it all: patients deserve permission to dream beyond survival. Biomarkers matter, but so do birthdays, travel, and the comfort foods that make you feel at home.

If this conversation resonates, follow the show, share it with someone who needs a gentler path, and leave a review to help more people find evidence-based, humane IBD care. Your feedback shapes future episodes—what question should we tackle next?

Nutrition Pearls podcast with Venus
Venus on X
Solid Starts app
"Offering Nutritional Therapies to Patients with IBD: Even If You're Not An Expert"- Video from Nutritional Therapy for IBD

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Want a clear, human guide to modern IBD care without the jargon? We’re joined by Janette Villalon, a physician assistant at UC Irvine’s IBD Center, who brings a front-line view of what truly helps patients: personalized therapy choices, honest safety talk, and practical plans that fit real life. She traces the evolution from a handful of anti-TNFs to a wider toolkit—anti-integrins, IL-12/23 and IL-23 inhibitors, JAK inhibitors, and S1P modulators—and explains how we match treatments to goals like fast relief, fewer side effects, and coverage of extraintestinal issues such as arthritis, uveitis, and psoriasis.

We dig into how APPs power the day-to-day of IBD clinics, from education to monitoring and rapid access, and how the GHAPP Conference and national societies elevated advanced practice training. Janette breaks down when clinical trials make sense, why strict inclusion criteria matter, and how logistics can steer decisions when someone is very sick. She demystifies biosimilars, outlining FDA standards that support confident switches when insurance demands it, and shares how she helps patients balance infusions, injections, or pills against travel, work, and adherence.

For those planning a family, Janette offers timely guidance: aim for clinical and endoscopic remission three to six months before conception, continue pregnancy-safe maintenance therapy, and discuss starting low-dose aspirin at 12 to 16 weeks to lower preeclampsia risk, coordinated with maternal-fetal medicine.

Looking ahead, we explore precision medicine and AI—predictive markers, microbiome insights, and smarter monitoring that could reduce trial-and-error and catch flares early. The throughline is empowerment: ask questions, read, return for follow-ups, and shape your care around your life. We close with community resources from the Crohn’s & Colitis Foundation and a shout-out to Camp Oasis for young patients.

If this conversation helped you, subscribe, share it with a friend, and leave a quick review—what’s the one topic you want us to go deeper on next?

Links:

Gastroenterology & Hepatology Advanced Practice Providers (GHAPP) organization
Camp Oasis- Crohn's & Colitis Foundation USA
IBD Medication Guide- Crohn's & Colitis Foundation USA
Pregnancy & IBD video- Crohn's & Colitis Foundation USA

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A boxer in training. A terrifying spiral of symptoms. A life-saving surgery that changed everything. Jose Torres joins us to share how ulcerative colitis pulled him out of the ring and propelled him into purpose—building community, advancing equity, and living well with a J‑pouch in a city that isn’t designed for urgent needs.

We trace Jose’s path from misdiagnosis in Brooklyn to specialized care in Manhattan and the brutal logistics of public transit without bathrooms. He opens up about the cultural currents in his Mexican and Puerto Rican family—why speaking up took time, why steroids raised tough questions, and how food traditions collided with new IBD realities. The story turns on resilience: a colectomy and J‑pouch, early pouchitis, iron infusions, and then a decade of medication-free stability supported by smart nutrition, consistent exercise, and honest attention to mental health.

Jose also brings us inside the Crohn’s & Colitis Foundation—from literally ringing the office doorbell to roles in advancement, business development, and DEI leadership. We talk about real lived experience, research into disparities, and why culturally fluent care changes outcomes. Along the way, he shares practical tactics for managing frequency, a nudge toward pelvic floor physical therapy, and a grounded philosophy: don’t chase perfection, cultivate accountability and hope.

If stories of grit, culture, and community help you feel less alone with IBD, this one’s for you. Cheers!

Links:

Camp Oasis- Crohn's & Colitis Foundation USA
Camp Purple- Crohn's & Colitis Foundation New Zealand
About IBD podcast with Amber Tresca episode- "IBD in the Hispanic Community with Dr. Oriana Damas"

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Imagine being able to turn down the volume on gut pain, food fear, and medical anxiety—without white-knuckle coping or guesswork. We sit down with Dr. Ali Navidi, co-founder of GIpsychology.com and past president of the Northern Virginia Society of Clinical Hypnosis, to unpack how clinical hypnosis and gut-focused CBT help people with inflammatory bowel disease interrupt the gut-brain loop that keeps symptoms alive. No stage tricks here—just practical tools that retrain the nervous system, reduce visceral hypersensitivity, and restore a sense of control.

We explore the real differences between stage and clinical hypnosis and why trance is a natural state you already know how to access. Dr. Navidi explains how anchors—a simple conditioned cue—can trigger a calming response within seconds, whether you’re prepping for a colonoscopy, calling the insurance company, or navigating an unexpected flare. We dig into disorders of gut-brain interaction (DGBIs) that can drive symptoms even when labs look great, and why gut-focused CBT plus hypnosis outperforms one-size-fits-all mental health approaches for persistent GI distress.

Trauma and nocebo effects show up in subtle ways across the IBD journey. We get candid about medical trauma, memory reconsolidation, EMDR as a hypnotic protocol, and how conditioned food sensitivities form—like the “pizza panic” that lingers long after a flare. You’ll hear how to calm hypervigilance, rebuild trust with your body, and reintroduce foods safely. We also share details on a new eight-week telehealth group, created with the Crohn’s & Colitis Foundation and the American College of Gastroenterology, that pairs weekly skills training with recorded hypnosis sessions for daily practice.

Ready to try tools that actually change how your system reacts? Follow, share with a friend who needs hope, and leave a review to help others find the show. Your story might be the anchor someone else needs today.

Links:

Information about the IBD Psychotherapy Group
Information on Disorder of the Gut-Brain Interaction (DGBI)
Great resources from GI Psychology
Article in the Atlantic
Dr. Navidi on the About IBD Podcast with Amber Tresca

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Comedian Ian Goldstein takes us through his journey with Crohn's disease, beginning with his diagnosis at 16 when he was just trying to navigate the already challenging world of high school, SATs, and planning for college. With candid humor, he recounts the moment he realized something was seriously wrong – not just from frequent bathroom trips, but when a coworker pointed out his dramatic weight loss.

What follows is a rollercoaster of medical experiences that many in the IBD community will recognize – from the shock of needing a colonoscopy as a teenager to the trial and error of finding effective medications. Ian vividly describes his first major bowel obstruction during his senior year of college, complete with what he calls the "modern-day torture device" known as an NG tube. Despite his best efforts to manage his condition through diet alone, he eventually required surgery in 2022 to remove seven strictures from his small intestine.

The conversation takes a fascinating turn when Ian shares how he's transformed his medical journey into comedy shows. From "The Autoimmune Saloon" to a celebration party for meeting his healthcare deductible (complete with custom cupcakes and hats), he's found ways to create community while addressing serious issues like medical debt. These creative outlets not only helped him process his experiences but connected him with others who could offer crucial advice about doctors and treatments.

Perhaps most valuable are Ian's insights about navigating the healthcare system with a chronic illness. He speaks honestly about the frustration of insurance denials, the anxiety of unexpected medical bills, and the challenges of having an invisible disability. His experiences highlight the importance of self-advocacy, finding the right medical team, and building a supportive community.

Ready to laugh, cry, and feel a little less alone in your IBD journey? Listen as Ian shares his practical wisdom: record your doctor appointments to remember important information, and seek out community connections that might literally change your life. Whether you're newly diagnosed or a veteran of chronic illness, this conversation reminds us all that finding humor in dark places might be our most powerful medicine.

Links:

Ian's website
New York Times article about Ian's party to celebrate meeting his healthcare deductible
The Squeaky Wheel- satire publication that focuses on the experiences of people living with disabilities.
Tina's episode with us
Dr. David Schwartzberg's episode with us
Nicole's episode with us- Ian mentioned Nicole and how supportive she's been to him but we sadly had to cut that part out for length. But- get to know Nicole!!

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Imagine visiting your gastroenterologist and feeling comfortable enough to discuss every aspect of how IBD affects your life—including your sexual health and practices. For many patients, particularly those in the LGBTQI+ community, this remains an elusive dream rather than reality.

Dr. Victor Chedid, gastroenterologist and director of Mayo Clinic's Pride Clinic, joins Bowel Moments to tackle this crucial gap in IBD care. With disarming honesty and clinical expertise, he reveals why addressing sexuality isn't just about inclusivity—it's about providing complete medical care. When 95% of providers believe discussing sexual health is important but only 27% actually do it, patients suffer in silence with questions that directly impact their quality of life.

The conversation dives deep into practical approaches for both patients and providers. Dr. Chedid shares his framework for discussing sexual practices with patients, from the straightforward question "What do you do for sex?" to navigating complex conversations around surgical interventions like J-pouch formation. For transgender patients, he unpacks recent research on gender-affirming hormones and IBD, emphasizing that life-saving gender-affirming care should never be withheld due to IBD concerns.

Perhaps most compelling is Dr. Chedid's perspective on cultural humility and intersectionality. Each patient's experience is shaped by multiple overlapping identities—their sexuality, gender, race, nationality, and more. Rather than making assumptions, he advocates for providers to "leave their biases at the door" and approach each person's unique situation with curiosity and respect.

"People living with IBD are the experts of their own bodies," Dr. Chedid reminds us in his powerful closing thoughts. "When they say something feels off, it's not a guess—it's lived experience." This principle forms the foundation of truly inclusive care—care that sees patients as whole people deserving of dignity, understanding, and comprehensive treatment.

Ready to advocate for more inclusive IBD care? Share this episode with your healthcare team and join the conversation about creating safe spaces for everyone in our community.

Links:

AGA's Pride Month Provider Spotlight on Dr. Chedid
Dr. Chedid talking about forming the IBD Pride Clinic
"Your Top 6 Questions Answered by Dr. Victor Chedid" -A Program Dedicated to IBD Patients from the LGBTQIA+ Community- Crohn's & Colitis Foundation- USA

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For two decades, Rachel Gebhardt has navigated the complex terrain of Crohn's disease with a refreshing perspective shaped by her father's experience with the same condition. Where her father let illness define him, Rachel chose a different path—one filled with humor, openness, and resilience—despite her case being more medically severe.

Rachel's journey encompasses four bowel surgeries and fourteen hospital admissions since 2020 alone, including a colostomy she affectionately named "Whoopie." With disarming candor, she shares the moment her surgeon showed her a photo of a woman in an American flag bikini with a matching ostomy bag cover as encouragement—a moment that eventually inspired her own celebratory beachside photo years later. Through skin infections, bowel obstructions, and dietary restrictions, Rachel maintains her commitment to living fully and modeling positive coping for her children.

The military healthcare system presented unique challenges, but also connected Rachel with Dr. Anish Patel at Brook Army Medical Center, who became not just her gastroenterologist but her advocate and ally. Their relationship exemplifies the profound difference compassionate, specialized care makes for patients with complex conditions. Rachel details her experience with hyperbaric treatments, medication complications, and the surprising remission she experienced only during pregnancy and breastfeeding—highlighting the understudied connection between hormones and IBD.

What resonates most deeply is Rachel's transformation from initially viewing her ostomy as "the end of the world" to embracing it as a source of freedom. Now training for a half marathon and hiking mountains previously inaccessible when bathroom urgency controlled her life, she's become an outspoken advocate for ostomy awareness. Her message is clear and powerful: life with an ostomy can be not just manageable, but genuinely good—a perspective desperately needed by those facing similar paths. For anyone navigating IBD or supporting someone who is, Rachel's story offers both practical wisdom and heartening hope.

Links:

United Ostomy Association
Our episode with Dr. Anish Patel
Pregnancy and Crohn's - video from Brigham & Women's IBD Center
Pregnancy & Breastfeeding info- Crohn's Colitis UK

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What happens when your body declares war on multiple organs? Julie Davis knows this reality all too well. Her medical journey began with a celiac disease diagnosis at 18, followed by ulcerative colitis in college, but it was the sudden onset of autoimmune pancreatitis in 2011 that turned her world upside down.

Julie's story is remarkable not just for the rare combination of conditions she manages, but for the extraordinary resilience she's shown throughout her journey. As a dietitian who became a physician's assistant while battling debilitating pancreatitis flares, Julie brings unique perspective from both sides of healthcare. She takes us through the harrowing experience of multiple hospitalizations, specialists puzzling over her case at Mayo Clinic, and ultimately, the life-altering decision to have her pancreas completely removed in 2023.

The procedure—called total pancreatectomy with islet cell autotransplantation—is so rare that Julie couldn't find a single podcast about it. Her pancreatic cells were extracted and transplanted into her liver, turning her into what she describes as "essentially a type 1 diabetic" overnight. Despite this dramatic medical intervention and the insulin pump she now relies on, Julie's perspective remains incredibly positive.

Perhaps most inspiring is how Julie has refused to let her health conditions define her limitations. She completed PA school despite having an endoscopy and nerve block the same morning as important exams. She had three children through IVF while managing multiple autoimmune conditions. And today, she's passing on her hard-won wisdom to her daughter, who has inherited celiac disease.

Julie's message to fellow chronic illness warriors rings clear: "It doesn't define you. You can still do things that you love." Her extraordinary journey demonstrates that even the most complex medical challenges can't stand in the way of a determined spirit pursuing a fulfilling career, family life, and future.

Links:

The Juicebox Podcast
Mission Cure: Nonprofit working in improve quality of life and bring more treatments to chronic pancreatitis

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Warning that this episode talks very candidly and descriptively about surgery and more.
Few IBD stories contain as many twists, complications, and near-death experiences as Bryan Schulze's journey with ulcerative colitis. What began with occasional bleeding during his military deployment escalated into a life-threatening medical emergency when doctors discovered he had been hemorrhaging internally for months. With severe anemia and barely conscious, Bryan's introduction to IBD came with a stark realization — he had been slowly dying without knowing it.

Bryan's candid account takes us through the harrowing reality of military service with undiagnosed IBD, the struggle to maintain dignity while bleeding profusely, and the complex surgeries that followed. After medication failures and complications that defy belief, Bryan underwent a full colectomy and J-pouch surgery that led to severe complications including a massive abdominal infection, wound vacuum treatments, and catastrophic surgical errors.

Beyond the physical trauma, Bryan shares the emotional and professional toll of IBD. From workplace discrimination to failed career dreams, steroid-induced diabetes to heart failure, and battles with depression and anxiety — his story encompasses the full spectrum of challenges IBD patients may face. Yet through it all, Bryan found his way back through support from his family, reconnection with his faith, and an indomitable will to live.

Now serving as a police officer with a permanent ostomy bag, Bryan offers powerful wisdom to fellow IBD warriors: "Take a deep breath. It's not a life ender. It is a life changer. Be willing to adapt with it so that you can overcome it and still live the life that you were given to live." His message of resilience serves as a beacon for anyone facing seemingly insurmountable health challenges.

Have you been struggling with IBD? Share your story or questions with us, and remember that no matter how difficult your journey, you're never alone in this fight.

Links:

Our episode with Dr. Anish Patel
Our episode with Matty Bowels!
Veterans with IBD Support Group- Cron's & Colitis Foundation USA
About IBD Podcast episode with Dr. Anish Patel
John's story of serving in the Royal Marines in the UK- Crohn's & Colitis UIK

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Kimberly LaRose's journey from a nine-year diagnostic odyssey to creating an award-winning vodka demonstrates the remarkable resilience found in the IBD community. After struggling with unexplained symptoms that doctors repeatedly misdiagnosed, Kimberly finally received her Crohn's disease diagnosis and discovered that gluten and corn were major inflammation triggers for her body.

Rather than seeing her dietary restrictions as limitations, Kimberly embraced a philosophy of "replacing, not removing." This positive mindset would prove transformative when she attended an event where she couldn't eat or drink anything due to her restrictions. What began as a half-joking call to a friend about creating their own vodka evolved into Wisher Vodka – a sugar beet-based spirit that's gluten-free, grain-free, and vegan.

The path from concept to award-winning product wasn't simple. Kimberly and her co-founder Emily researched 300 distillers, visited 60 personally, and developed a unique production process that includes lab testing every batch to ensure purity. Their commitment to quality and transparency has earned them multiple prestigious awards, including Grand Vodka of the Year with a remarkable 98-point taste rating from the Bartender Spirits Award.

Beyond the business success, Kimberly's story highlights how health challenges can unexpectedly open new doors. "I wouldn't have created Wisher had I not been diagnosed with Crohn's," she reflects. Her work supporting the Crohn's and Colitis Foundation further demonstrates her commitment to the IBD community that sparked her entrepreneurial journey.

Whether you're navigating dietary restrictions, seeking inspiration for managing chronic illness, or simply appreciate the story behind your spirits, Kimberly's journey reminds us that sometimes our greatest struggles lead to our most meaningful creations.

Links:

Sip with Confidence! - Wisher Vodka's website
Cocktail recipes

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Navigating the workplace while managing inflammatory bowel disease can feel like walking a tightrope—balancing health needs against career responsibilities. This episode cuts through the confusion with straightforward, practical advice from someone who truly understands both sides of the equation.

Employment attorney Abbe Feitelberg returns to share her unique perspective as both an IBD patient and legal expert. She breaks down the Family Medical Leave Act (FMLA) and Americans with Disabilities Act (ADA) in clear, accessible terms that empower you to advocate for yourself in any workplace situation. From understanding which companies must comply with these laws to learning exactly what paperwork you need, Abbe demystifies the process of securing your workplace rights.

The conversation explores common misconceptions, like believing managers need detailed medical information (they don't!) or that requesting accommodations might hurt your career (it shouldn't!). You'll discover practical strategies for maintaining privacy while getting the support you need, whether that's intermittent leave for treatments, flexible scheduling during flares, or immediate bathroom access. Most importantly, you'll learn how to document everything properly to protect yourself if issues arise.

What makes this episode particularly valuable is how it addresses real-world scenarios: When should you disclose your condition? What happens if your accommodation request is denied? How do you balance transparency with privacy? As Abbe points out, "These protections exist to help you succeed—never be afraid to ask for what you need." Whether you're currently employed, job hunting, or supporting someone with IBD, this episode provides crucial knowledge to navigate workplace challenges with confidence and dignity.

Links:

Abbe's first episode with us
US Equal Employment Opportunity Commission
Info on the Americans with Disabilities Act
Info on the Family Medical Leave Act
Employee and Employer resources- Crohn's & Colitis Foundation- USA

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When you're battling inflammatory bowel disease, the wounds aren't always visible. Beyond the physical symptoms lies a reality many patients face but few discuss openly – the psychological impact of medical trauma.

Dr. Christina Jagielski, clinical health psychologist at Michigan Medicine, brings her expertise to this powerful conversation about trauma-informed care in the IBD community. With surprising candor, she reveals how she discovered that approximately half of gastroenterologists avoid screening for trauma history – not because they don't care, but because they feel unprepared to respond appropriately to what patients might share.

Through Robin's emotional personal story of emergency room panic attacks and medical gaslighting, we witness firsthand how past medical experiences shape current healthcare interactions. The conversation dives deep into practical strategies for both patients and providers: how to communicate triggers without reliving trauma, why certain medical settings feel unsafe, and what small changes can make enormous differences in patient comfort.

Dr. Jagielski challenges the longstanding approach of selective trauma screening based on gender or diagnosis, advocating instead for universal trauma-informed care. "People living with IBD are so much more than their labs and test results," she reminds us, emphasizing that acknowledging patients' lived experiences is just as crucial as treating their physical symptoms.

Whether you're a patient who's experienced medical trauma, a healthcare provider seeking to create safer spaces, or someone supporting a loved one with IBD, this episode offers transformative insights into healing the hidden psychological wounds of chronic illness. Listen now to start breaking down the barriers between physical and psychological care in the IBD journey.

Links:

Dr. Christina Jagielski
"Had a Traumatic Medical Experience? Don't Ignore it"- article in Psychology Today by Dr. Tiffany Taft
Journal Article on Medical Gaslighting- Dr. Jagielski, Dr. Taft, and Dr. Fuss

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Amanda Phillips never imagined her lifelong battle with Crohn's disease would transform into a business helping other people living with chronic illnesses. But after decades of unexplained stomach pains, missed diagnoses, and learning to navigate life with IBD, that's exactly what happened.

Amanda takes us through her journey from childhood stomach aches dismissed as "just constipation" to her eventual diagnosis at 17. We explore how she learned to identify her personal flare triggers—stress and GI bugs being the major culprits—and the profound anxiety this created around situations most people take for granted, like commuting to work or being around sick family members.

The pandemic became an unexpected turning point in Amanda's health journey. Working remotely eliminated the bathroom-related stress of her daily commute. When her company pushed employees back to the office, Amanda fought for accommodations, facing frustrating resistance from HR despite documentation showing remote work improved her health and performance.

The birth of Be Well came during a February 2022 hospitalization, when Amanda found herself freezing in a standard hospital gown. Looking around at the medical wear available, she thought, "I can do better than this."

What makes Amanda's approach unique is her commitment to meaningful design. Every Be Well product—from symptom tracking journals to discreet pill holders to comfort items with inspirational quotes—comes from lived experience and continuous customer feedback with a focus on prioritizing patient comfort, dignity, and practicality. Now she's expanding into new territory with hospital gowns, non-metal MRI hoodies, and more innovations.

Whether you're living with chronic illness or supporting someone who is, this episode offers inspiration in turning personal challenges into purpose and creating solutions that truly understand patient needs.

Links:

Link to the BeWell website
Link to BroGlo
Information about IBD and work- Crohn's & Colitis Foundation- USA
My guest co-host, Stacey Calabro's episode

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When your gastroenterologist is also your dad, navigating the complexities of Crohn's disease takes on a whole new dimension. Angie's powerful story reveals a journey of discovery, resilience, and unexpected insights into managing IBD through life's major transitions.

Diagnosed in 2017 following a period of intense personal stress, Angie shares her quest to understand why she developed Crohn's without family history. Her analytical approach has led to fascinating observations about potential triggers and management strategies. Most notably, she's discovered her Apple Watch provides possible early warnings of impending flares through heart rate variability changes.

The conversation takes a particularly compelling turn when Angie discusses her pregnancy experience. While initially smooth, a flare during her third trimester created significant concerns about her baby's development. She candidly shares how her medical team balanced medication adjustments with pregnancy safety, ultimately leading to the birth of her healthy son.

Beyond medical management, Angie reveals how her experience with cold exposure seemed to help her, and how changing her relationship with exercise from aesthetic goals to gratitude for movement transformed her approach to fitness. Her perspective on finding meaning through chronic illness challenges listeners to consider how difficulties might lead to unexpected gifts – deeper connections, greater self-awareness, and opportunities to help others.

Whether you're newly diagnosed, preparing for pregnancy with IBD, or simply seeking fresh insights on managing a chronic condition, Angie's story offers valuable perspectives from someone who's navigating these waters with honesty, humor, and hope. Listen now to discover how technology, family support, and shifting perspectives can create a path forward through the challenges of inflammatory bowel disease.

Links:

Our episode with Natalie Hayden
Natalie's Instagram
Our episode with Dr. Tiffany Taft
Our episode with Josie McGarva re: heart rate variability
Our 2nd episode with Jose McGarva and also Stacey Collins, RD about research

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What happens when your chronic illness becomes the catalyst for global exploration and environmental advocacy? This week we talk to Nicholas Mertens! Nick was diagnosed with Crohn's disease six years ago and he's turned his health journey into a platform for investigating how climate change impacts healthcare systems worldwide.

While most college students rarely venture beyond their comfort zones, Nick has represented his university at United Nations climate conferences in Dubai and Azerbaijan, researched indigenous biodiversity in Australia, and traveled to eight countries across four continents—all while managing his Crohn's disease. The political science and environmental studies major shares his remarkable journey from diagnosis to long-term remission, revealing how these experiences shaped his understanding of global health challenges.

The conversation takes fascinating turns as Nick details the practicalities of international travel with a chronic condition. From refrigerating Humira during 40-hour journeys to navigating customs with medication documentation, his strategies are invaluable for anyone with IBD considering travel. His culinary adventures prove equally enlightening—discovering his body tolerated exotic kangaroo meat perfectly while rejecting familiar McDonald's hamburgers in foreign countries. These unexpected reactions highlight the unpredictable nature of Crohn's and the importance of flexibility when managing the condition abroad.

Nick's involvement with the Young Patients Autoimmune Research and Empowerment Alliance (YP-AREA) demonstrates his commitment to supporting other young people with chronic conditions. This growing organization creates educational resources specifically for adolescents and young adults navigating autoimmune diseases—demographics often overlooked in medical literature and research.

Listen as Nick shares his powerful perspective on remission, defining it not by lab results but by quality of life and regaining control over your condition. His parting wisdom reminds us that climate change and healthcare are "inextricably linked," and understanding these connections is crucial for anyone living with chronic illness in our rapidly changing world.

Links:

Young Patients Autoimmune Empowerment Alliance (YP-AREA) Instagram
YP- AREA YouTube- Video of the transitioning to adult care webinar they held with friend-of-the-show, Dr. Jordan Shapiro
Traveling with prescription medications- US Customs and Border Control
Traveling with IBD- Crohn's & Colitis Foundation USA
IBD Passport- nonprofit with advice on traveling abroad with IBD

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This week we bring back our friend and friend of the show, Dr. Ashish S. Patel! Dr. Patel takes us on a global journey through the evolving landscape of pediatric inflammatory bowel disease treatment, revealing contrasts between approaches across continents and highlighting gaps in how new medications reach children.

While adult IBD patients have benefited from an explosion of treatment options over the last two decades, children remain limited primarily to anti-TNF biologics as their only FDA-approved options. This forces physicians to fight insurance battles for access to newer medications or enroll patients in clinical trials that come years too late. "We have to bring evaluation of these medications to pediatrics concurrently with adult populations," Dr. Patel explains, sharing how advocacy efforts aim to shift this paradigm.

The conversation takes a fascinating turn when comparing treatment philosophies worldwide. At the World Congress in Buenos Aires, nutritional therapy, probiotics, and dietary interventions dominated discussions—a striking contrast to North American conferences featuring pharmaceutical companies. This reveals how resource availability shapes medical approaches, with Latin American physicians developing expertise in nutritional interventions while North American practices focus on biologics.

Dr. Patel's most hopeful insights come from current research aiming to personalize treatment based on a patient's unique profile. Studies collecting genetic information, microbiome data, and environmental exposures may eventually allow doctors to determine the optimal intervention—whether medication, diet modification, or environmental change—for each child at diagnosis. "In the near future, at least for certain types of IBD, we're talking about something that's curative rather than just therapeutic," he shares, offering hope that we're moving beyond symptom management toward addressing root causes.

Join us for this eye-opening conversation that challenges conventional thinking about how we research, develop, and implement treatments for one of medicine's most complex childhood conditions.

Links:

ImproveCareNow
North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)

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What happens when you decide to throw caution to the wind, decline your PhD acceptance, quit your job, and travel the world for 10 months—all while managing Crohn's disease? Friend of the show and health psychologist Josie McGarva takes us along on her extraordinary global adventure, revealing both the challenges and profound joys of pursuing dreams despite having IBD.

From the medication logistics nightmare of switching from the medication she was on for a long time to one that she can more easily travel with, to having her mother smuggle medication internationally hidden inside fluffy socks, Josie's preparation for this journey was an adventure itself. With refreshing candor, she shares her experience navigating living and volunteering abroad while traveling on a tight budget of just $1,000 per month.

Josie's travels have taken her from the breathtaking mountains of Patagonia to the vibrant temples of Thailand, with meaningful stops volunteering at hostels, dog rescues, and teaching English in remote villages along the way. Through food poisoning in Thailand, 28-hour bus rides in Argentina, and confronting roosters at dawn in remote villages, Josie demonstrates remarkable resilience while never losing sight of why she embarked on this journey: "I'm finally healthy, which is why I have to go."

Beyond the travel tales lies a deeper narrative about identity and chronic illness. Having been diagnosed at 13 and sick throughout her formative years, Josie reflects on how being in remission has allowed her to question how much space IBD should occupy in her future life and career. Her powerful message resonates far beyond the IBD community: limitations are real, but with creativity, determination, and support, dreams remain within reach.

Links:

Our first episode with Josie
Our Research Roundup episode with Josie and Stacey Collins, RD
Josie's Instagram account
Workaway- volunteer while traveling site
The Workaway opportunity with Dani and the dog rescue
Fundacion Animal Chile

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The quest for better outcomes in pediatric IBD has taken significant strides forward, and Dr. Jeremy Adler returns to Bowel Moments to guide us through the most promising research developments of the past year. Dr. Adler is a clinical Professor in the Division of Pediatric Gastroenterology at the University of Michigan and serves as the Interim Director of the Susan B. Meister Child Health Evaluation and Research (CHEAR) Center.

We discuss how medication dosing strategies have evolved dramatically, with compelling evidence showing that body surface area measurements work better than traditional weight-based dosing for younger children. This seemingly simple adjustment yields dramatically better results, particularly as children grow and develop through puberty. Regular therapeutic drug monitoring—checking medication levels every 6-12 months or more frequently during growth spurts—has also proven critical for maintaining disease control in the pediatric population.

Prevention emerges as the cornerstone of Dr. Adler's research and clinical philosophy. The fascinating GEM study has identified changes in gut permeability that occur before IBD diagnosis, potentially opening doors to early intervention before symptoms appear. Meanwhile, Dr. Adler's own groundbreaking research demonstrates that early, aggressive treatment with anti-TNF medications can prevent serious complications like perianal fistulas, fistulas, and abscesses—complications that significantly impact quality of life and body image.

We navigate the complex terrain of treatment barriers, from insurance denials to psychological resistance to "stronger" medications. Dr. Adler challenges common misconceptions, noting that injectable or infusion medications often have better safety profiles than some oral options that patients perceive as "less intense." The conversation turns to normalizing surgical options like ostomies when needed, with Dr. Adler advocating for early introduction to surgical teams—not because surgery is imminent, but because establishing relationships reduces trauma if intervention becomes necessary.

With new medication mechanisms emerging and genetic markers helping to personalize treatment approaches, the research landscape offers real hope for children with IBD. Join us for this candid, informative discussion about protecting children from the worst outcomes of IBD through early intervention, personalized treatment, and collaborative care models that address both physical and mental wellbeing.

Links:

Research article- Preventing Fistulas and Strictures Among Children with Crohn's Disease
Journal Article referenced- National Perspectives of Barriers by Insurance and Pharmacy Benefits Managers in Pediatric Inflammatory Bowel Disease
ImproveCareNow

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This week Alicia and guest co-host Stacey Calabro talk to Stephanie LaFlamme! Stephanie takes us on an extraordinary journey through simultaneous health battles that would challenge anyone to their core. In late 2020, she was diagnosed with ulcerative colitis, but it wasn't until 2023 that her health challenges truly escalated. Stephanie discovered a breast lump that led to a diagnosis of triple-negative breast cancer—all while her IBD symptoms were spiraling out of control.

From multiple hospitalizations to living with an ostomy, from chemotherapy to a double mastectomy, Stephanie's story reveals the physical and emotional complexities of becoming a patient after years of working as a mental health professional. Her insights into the shame and self-blame that often accompany chronic illness offer a healing perspective.

Throughout her medical odyssey, Stephanie discovered unexpected sources of strength. Her daily journaling practice became a lifeline during her darkest moments, helping her process emotions and find her way back to herself. She shares wisdom about setting boundaries, managing energy, and practicing "unrelenting patience" with your body during recovery.

Her story reminds us that while cancer often receives significant attention and support, living with IBD can feel isolating and less understood—yet both require tremendous courage and compassion.

Join us for this deeply moving episode that will resonate with anyone navigating chronic illness, supporting a loved one through health challenges, or seeking to understand the profound ways illness can transform our relationship with ourselves.

Links:

Journal prompts for people living with chronic illnesses
Another journaling tool

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Discover the cutting-edge world of inflammatory bowel disease (IBD) research and management with Dr. Charlie Lees, a leading gastroenterologist and professor at the University of Edinburgh. In this episode, Dr. Lees guides us through his groundbreaking initiatives, including the Atomic IBD series and the insightful PREDICT study. Learn how innovative predictive health tools, such as sweat sensors, are shaping the future of IBD care and how the series has become a beacon of hope and knowledge for both patients and professionals.

Dr. Lees provides a deep dive into the findings from his PREdiCCT study, including finding on how mental health testing and diet may help indicate a possible flare. He also sheds light on the role of calprotectin levels in indicating inflammation and how patients can understand these levels and how to use them to track their health. This episode also emphasizes the importance of holistic patient care by addressing psychological factors like depression and inactivity, offering actionable strategies to enhance patient well-being.

Explore technological advancements in non-invasive health monitoring, from wearable tech to smart toilets, and their potential in revolutionizing IBD management. Dr. Lees also shares insights on the successful adoption of biosimilars across Europe, highlighting their cost-effectiveness and efficacy in improving patient outcomes. This episode is a must-listen for anyone interested in the future of sustainable healthcare, as it advocates for clear communication and collaboration between healthcare providers and patients to harness the full potential of these innovations globally.

Links:

Dr. Lees' Substack
Dr. Lees' YouTube Channel
Dr. Lees' patient video on Fecal Calprotectin
Dr. Lees' video on biosimilars

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Imagine navigating a life filled with complex medical diagnoses while juggling the everyday challenges of parenthood. That's the reality for our guest, Tish, the insightful creator of Luminous Wounds. Her journey with Crohn's disease, endometriosis, and other autoimmune conditions is not just a story of survival but a testament to resilience and advocacy. Tish shares her experiences of battling medical gaslighting and the importance of finding compassionate healthcare providers willing to listen.

The path to motherhood wasn't straightforward for Tish, and she courageously shares her struggles with fertility. Despite the heartbreak of miscarriage and the challenges of pregnancy during a pandemic, Tish now cherishes life as a mother to three, including twins. Her experiences bring to light the emotional and physical trials of fertility issues, alongside a narrative of hope and triumph over adversity with complications like hyperemesis gravidarum.

Yet, through all these trials, Tish emphasizes the significance of advocacy, trusting one's instincts, and the power of sharing stories. Her creation of Luminous Wounds is a beacon for those facing chronic health challenges, encouraging listeners to find humor amidst difficulty and the strength to speak up. Join us as we celebrate Tish’s journey and the impact of her story on the IBD community.

Links:

Tish's instagram account
"Life with Crohn's and Endometriosis: An Overlap of Painful Symptoms"- article at Endometriosis Foundation of America
Link to Mara's episode

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Join us for a fascinating conversation with Dr. Marla Dubinsky, a trailblazer in pediatric gastroenterology and a fierce advocate for people living with inflammatory bowel disease. She shares her journey from pediatric residency to becoming a leading voice in IBD care, shaping the future of treatment and advocacy. Through her work at Mount Sinai and as co-founder of Trellus Health, she’s revolutionizing patient care by integrating resilience and digital health solutions.

We dive into the intersection of medicine and entrepreneurship as Dr. Dubinsky reflects on the mentors who shaped her path and how she’s working to make innovative healthcare solutions both impactful and commercially viable. She also highlights the importance of a holistic approach, bridging physical and mental health to empower patients in their care journey.

Plus, we explore her work in women's health, particularly in IBD management during preconception and pregnancy. Through initiatives like We Care in IBD, she’s helping to create tailored programs that support women at every stage of life. Don’t miss this deep dive into precision medicine, prevention clinics, and the future of IBD .

Links:

Info on Trellus Health
Innovative programs at Mount Sinai IBD Center
A video about Dr. Dubinsky for her Jacobi Medallion award
The book Dr. Dubinsky mentions- "Likeable Badass: How Women Get the Success They Deserve" by Dr. Alison Fragale

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This week we reflect on the journey since launching Bowel Moments in August 2021, sharing our personal updates and the lessons we've learned along the way. We reminisce about the podcast's beginnings as a concept born out of a love of podcasts and how it evolved into a heartfelt platform for the IBD community, featuring memorable interactions with guests. We open up about our own journeys, revealing more than just the polished elevator pitches we've rehearsed over the years.

As we look to the future, we discuss plans for expanding our reach, engaging diverse voices around the world, and demystifying healthcare navigation by involving nurses, physician assistants, and insurance insiders. Highlighting our dream interviews, we express our desire to feature influencers like Sunny Anderson, Mike McCready, Kim Holderness and Rachel Elizabeth Slocum, hoping they can bring fresh perspectives and humor to our discussions.

We want to keep growing our incredible community of listeners who are passionate about understanding and supporting the IBD journey. So, hit subscribe, share with those who might need a dose of inspiration or laughter, and let us know what you think by leaving a review. Your support means the world to us, and we're excited to continue sharing these meaningful conversations with you. Thank you for being part of our journey, and here's to a future of engaging stories and shared discoveries!

Links:

Our episode with Dr. David Rubin
Our episode with Stacey C- The Deuce
Our episode with Dr. Ashish Patel
Our episode with Dr. Anish Patel
Our Research Roundup Episode with both Drs. Patel
Our episode with Dr. David Schwartzberg
Our episode with Stacey Collins- One of our guest hosts!
Our episode with Hannah Cramer- One of our guest hosts!
Our episode with Derek Dodson- One of our guest hosts!
Our episode with Lauren Erbach Barnfield- One of our guest hosts!

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Could your holiday season be a little less stressful and a lot more joyful? Our latest episode of Bowel Moments provides you with the tools to do just that, especially if you're navigating the festive chaos with Inflammatory Bowel Disease (IBD). We have the pleasure of welcoming back Stacey Collins, a registered dietitian and IBD specialist, who not only shares valuable professional insights but also her personal experiences in managing dietary restrictions. Together, we offer practical tips and heartfelt advice on how to enjoy holiday gatherings while keeping your health a priority. From thoughtful strategies like bringing your own dishes to gatherings to understanding the importance of choosing safe snacks, we discuss how to make this time of year not only survivable but enjoyable.

We also take a deep dive into the financial side of healthcare management, especially pertinent at the year's end. We explore how to maximize your healthcare benefits through strategic planning, whether it's scheduling medical procedures before the year closes or effectively using Health Savings Accounts (HSAs) and Flexible Spending Accounts (FSAs). Chronic conditions like IBD come with their own set of challenges and expenses, and we shed light on how these financial tools can ease the burden. With practical tips on managing these accounts, you'll discover how to make the most out of your healthcare benefits and minimize out-of-pocket expenses.

Finally, we touch on the emotional journey of living with IBD, emphasizing the importance of self-care and setting personal boundaries during the holiday season. From the relief of being able to enjoy simple pleasures, like eating fruit again, to using humor as a coping mechanism, we share personal stories and tips for thriving amidst life's challenges. As we wrap up the year, we encourage our listeners to prioritize well-being and find joy, reminding everyone to cherish the moments that truly matter. With warmth and gratitude, we toast to a healthy and joyful new year and invite you to share this episode with friends, rate, and review our show. Cheers to a wonderful year ahead!

Links:

Health maintenance checklists- Crohn's & Colitis Foundation- USA
Info on HSAs & Other Tax-Favored Health Plans- IRS USA
The Difference Between a Flexible Spending Account and a Health Savings Account- National Institutes of Health
FSA vs. HSA: What's the Difference? - MetLife
Eating During the Holidays- video from the Crohn's & Colitis Foundation USA
Nutritional Therapy for IBD website

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This week we spoke to Dr. Colm Collins! Dr. Collins is an Associate Professor at the Conway Institute of Biomolecular and Biomedical Research at University College Dublin. He shares his journey from the world of pharmacology to pioneering research in inflammatory bowel disease (IBD). You'll learn about the innovative approaches his team is exploring to revolutionize treatment options for IBD patients. With a blend of humor and expertise, Dr. Collins offers a rare glimpse into the challenges and triumphs of translating scientific breakthroughs into real-world health solutions.

Our conversation unravels the intricate relationship between the immune system and gut bacteria, as Dr. Collins explains how retinoic acid and microRNAs play crucial roles in managing IBD. We delve into the promising possibilities of replacing lost proteins and the therapeutic potential of cannabinoids, exploring their implications on both the immune system and the digestive tract. Amidst the science, we tackle the ethical and legal complexities of cannabis research, particularly in adolescents, as Dr. Collins shares his experiences navigating these challenges with integrity and humor.

Join us for an enlightening discussion that balances serious scientific inquiry with light-hearted anecdotes, as Dr. Collins recounts his experiences in Colorado and discusses the future of IBD treatment. From the nuances of cannabis use in managing IBD symptoms to the exciting potential of selective human receptor-modifying peptides, this episode promises to expand your understanding and offer hope for more effective therapies on the horizon. Plus, enjoy a humorous account of altitude adaptation and its quirky effects on newcomers and the unexpected twists in cannabis research funding.

Links:

Journal article: Manipulation of the Endocannabinoid System in Colitis: A Comprehensive Review
Journal article: Adherence, Safety, and Effectiveness of Medical Cannabis and Epidemiological Characteristics of the Patient Population: A Prospective Study
Information on medical cannabis and IBD: Crohn's & Colitis Foundation- USA
Research funding opportunities- Crohn's & Colitis Foundation- USA

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Ever wondered how someone turns a challenging health diagnosis into a source of artistic inspiration? This week we chat with Kaitlyn Niznik about her microscopic lymphocytic colitis and how is influenced her life and her art! Kaitlyn offers a unique perspective, sharing her journey from diagnosis to becoming an empowered advocate through her art. As an art teacher, Kaitlyn navigates the daily balancing act of managing her classroom and her health, all while creating meaningful art that she shares on Instagram. Discover how her experiences with colitis have ignited a passion for medical illustration and inspired her creative process.

Join us for this episode of Bowel Moments, where we explore the intersection of art and life with Kaitlyn Niznik, all wrapped up in a narrative that's as uplifting as it is insightful.

Links:

Kaitlyn's Instagram account- check out her beautiful art!
Information on Microscopic Colitis - Mayo Clinic
Collagenous and Lymphocytic Colitis info- National Institutes of Health

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This week we welcomed back Registered Dietitian, Neha Shah! Neha joined us back in episode 42 where she was interviewed by friend of the show and IBD RD Stacey Collins. Neha specializes in IBD and other GI disorders and has both a private practice and is also part of the Colitis & Crohn's Disease Center at UCSF. We spent this episode shedding light on the distinctive roles of enteral and parenteral nutrition in combating IBD-related malnutrition. This episode is your gateway to understanding how enteral nutrition (EN) and parenteral nutrition (PN) can transform treatment strategies.

We discuss everything there is to know about enteral nutrition, especially exclusive enteral nutrition (EEN), a potential game-changer for Crohn's disease management. Discover how EEN can stand alongside or even replace corticosteroids, offering an alternative path to remission and mucosal healing. While this approach has shown promise in pediatric cases, we delve into the more complex dynamics of adult treatment where compliance and lifestyle factors bring their own set of challenges. Neha emphasizes the pivotal role of dietitians in crafting personalized nutritional plans, ensuring that patients receive the tailored guidance they need.

From navigating the hurdles of enteral nutrition to transitioning to varied diets, this episode is packed with practical strategies and expert advice. Neha addresses common obstacles like weight fluctuations and gastrointestinal discomfort, offering solutions such as formula adjustments and the integration of partial enteral nutrition (PEN). As patients move from EEN to lifestyle-friendly diets like the Mediterranean or plant-based options, we explore how specific fibers and the Crohn's Disease Exclusion Diet (CDED) can optimize gut health. Whether you're a patient or a caregiver, this episode offers a comprehensive guide to navigating the nutritional complexities of IBD.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

South Asian IBD Alliance- Neha is on the board and super active with SAIA!
Nutrition and IBD info- UCSF health
Info on Exclusive Enteral Nutrition- Nutritional Therapy for IBD
Info on Partial Enteral Nutrition- Nutritional Therapy for IBD
Great overview of therapeutic diets for IBD! - Nutritional Therapy for IBD
Diet and Nutrition Info- Crohn's & Colitis Foundation
Diet and Nutriti

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This week we were so excited to have a crossover episode with the host of the About IBD Podcast- Amber Tresca! We turned the tables on Amber and interviewed her about her IBD story! Amber has been living with UC for several years and underwent a 2-step J-Pouch surgery. We talked about her story thus far and how that plus her background in medical writing led her to a career of educating and advocating for the IBD community and how that prompted her to create the About IBD podcast! We discussed her medical writing career, the many projects that she's been involved like IBD Social Circle, Verywell Health and more, her work attending and writing about GI conferences, and the importance and care with which she writes about and educates the IBD community. We also discussed her advocacy work for the IBD community including being invited to share the vital patient voice during the American Gastroenterological Associations annual "Fly In" in Washington, D.C. We also talked about her podcast called About IBD! We explored why she started it, how she selects and prepares her guests, the process she uses to create the episodes, and how she prioritizes her topics. You'll also get a chance to hear us geek out about hosting podcasts and even so insider info about the process.

Amber is truly a badass and we had such a great time getting to know her better!! We can't wait for you to learn more about her in this episode and for you to hear our About IBD episode with her in the near future!

*Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:*

About IBD Instagram site
About IBD X account
About IBD YouTube account
Info on About IBD podcast including where to find it!
A video about J-Pouch surgery- Crohn's & Colitis Foundation

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This week Alicia was joined by guest host and former guest, Hannah Cramer and they interviewed Alicia Aiello! Alicia A. is the President of Girls With Guts which is a nonprofit organization supporting and empowering women living with IBD and with ostomies. We talked to her all about her IBD journey and how that lead her to Girls With Guts. We discussed how her background in videography and visual arts helped her to bring some awareness to their work and how she eventually transitioned to become their President. We discussed some of their work including their "Butt Baskets" and their Lover Your Guts program and we spent a lot of time talking about their retreats. They host 2 retreats per year including a New Attendee or "Newbie" Retreat as well as an annual retreat that brings in come of those first-timers as well as alumnae.

We really enjoyed our conversation with Alicia and are so impressed with the work of GWG and Hannah was an amazing co-host!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)Links:

Girls With Guts website
Info about the GWG retreats
The presentation that Alicia gave to her class
Alicia's personal website with more videos
Hannah's episode
Hannah and Robin's episode about EMDR

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Trigger warning: This episode discusses suicidal ideation.
This week we had so much fun getting to know Belinda Brown! Belinda is the CEO of Crohn's & Colitis New Zealand! Belinda was diagnosed with Crohn's at 26 years old and we discussed her diagnosis, her search for the right treatment, navigating the consequences of her surgeries when she was trying to conceive, and her struggle with thoughts of suicide and how she coped with these dark feelings. We also talk about how her diagnosis led her to get involved with Crohn's & Colitis New Zealand, to join their board, and to eventually lead the organization as CEO. We discussed the great work they're doing and especially their amazing camp for kids living with IBD called Camp Purple.

We know you'll love Belinda as much as we did and we can't thank her enough for sharing her passion, her truth, and her vulnerability with us and with our community.

If you or a loved one struggling with thoughts of suicide, please call or text 988.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links;

Crohn's & Colitis New Zealand
Camp Purple
Coping emotionally with IBD
Fertility and pregnancy with IBD
3 Ply Take on the Rickshaw Run video
Information about visiting New Zealand with IBD

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This week Robin was joined by guest host, friend of the show, and IBD Dietitian, Stacey Collins! They spoke to Yi Min Teo! Yi Min is Registered Dietitian Nutritionist and owner of Herbs and Food – a virtual private practice specializing in digestive health and culturally-sensitive nutrition counseling. They talked about Yi Min growing up in Singapore and some of the cultural differences that she noted when she moved to the US and also some of the similarities. They discussed working with clients who have comorbid diagnoses with their IBD and the importance of personalizing a plan that works for all aspects of their health and circumstances. This lead to a really interesting conversation about incorporating cultural foods and traditions into diet plans and also to food accessibility and disparities. They also talked about advocacy and expanding dietitian services to even more people as well as meeting each patient where they're at to learn how to incorporate effective diet changes to each person's life circumstances. It was a really impactful discussion about food accessibility and how to make diet therapies more available to everyone living with IBD. Listen and learn along with me with this fun and important conversation!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)Links:

Find Yi Min on Instagram
Yi Min's website
Nutritional Therapy for IBD nonprofit- great info on diet therapies for IBD
Diet, Culture, and Your Body- Crohn's & Colitis Foundation USA

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This week we spoke to Dr. Alan Moss! Dr. Moss is the Chief Scientific Officer at the Crohn's & Colitis Foundation in the US. Previously he was the Director of the Crohn’s & Colitis Program at Boston Medical Center (BMC) and Professor of Medicine at Boston University (BU). He is a clinician-scientist who is a passionate patient advocate. We talked to him about moving from Ireland to the US to pursue training in IBD. We talked to him about why he decided to switch from direct patient care to leading the scientific efforts at the Foundation. We talked to him about what plans he has for the future of research at the Foundation including shepherding in new technology such at AI. We talked to him about how they are ensuring patient data protections and equity in how technology may shape research. We discussed how the research agenda has changed from focusing solely on remission to prevention, remission and on to repair and healing past damage. Finally we discussed the new 5 year strategic plan that the Foundation has undertaken in guiding their research agenda and the process by which healthcare providers, researchers and patients helped to build this new plan.

We had such an interesting conversation with Dr. Moss and we're excited to see what he will accomplish in this new role.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Overview of Challenges in IBD
Information about IBD Plexus
Information about IBD Qorus
Information in IBD Ventures

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This week we had such an interesting conversation with Dr. Erica Barnell. Dr. Barnell is the Co-Founder and Chief Medical and Science officer for Geneoscopy, Inc! Geneoscopy is a life-sciences start-up company that leverages eukaryotic biomarkers to non-invasively diagnose, monitor, and treat gastrointestinal disease. The idea for Geneoscopy was conceived during Dr. Barnell’s first clinical rotation while earning her MD/Ph.D. at Washington University School of Medicine in St. Louis. Specifically, Erica encountered a woman with Stage IV colorectal cancer (CRC) who had never undergone a colonoscopy, citing the inconvenience and burden of attending a traditional colonoscopy as key barriers. Dr. Barnell developed an easy non-invasive stool test to screen for colon cancer and she is now expanding it to the IBD space. She and her team are working to be able to use this RNA screening tool to allow for better prediction of treatment outcomes, disease monitoring and more. We talked to her about developing her initial test, going through the FDA approval process, and then developing a company while still finishing her MD/PhD. We also talked to her about starting a company with her brother and all of the many life changes she went through during it's initial stage as well. We discussed RNA technology and she gave us a quick lesson on it, and finally we discussed her participation in the Crohn's & Colitis Foundation's IBD Innovate Conference earlier this year and how it helped her premier her product to the IBD space and to explore possible partnerships and funding opportunities.

Robin and I are big geeks for research and innovation and this conversation with Erica was so fun.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Article about the IBD Innovate Conference- Crohn's & Colitis Foundation- USA
Episode of Oncology Overdrive from Healio with Dr. Barnell
FDA Approves ColoSense test- Colorectal Cancer Alliance

Tune in to the Patient Advocacy Voices Podcast today
Join Sanofi's Eric Racine to meet the unsung heroes leading patient advocacy organizations
Listen on: Apple Podcasts Spotify

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This week we talked to Nicole Kittleson! Nicole's daughter Addy was diagnosed with Crohn's disease when she was 8 years old but that diagnosis wasn't easy to get to. Addy wasn't growing or gaining weight, her eyes became dull and her hair started falling out. Nicole brought her concerns to her daughter's pediatrician but they just encouraged her to feed her more calories but Nicole knew something more was going on. When her daughter started experiencing skin inflammation and complaining about blood in her stool and Nicole finally demanded that her daughter get the tests she needed to get a definitive diagnosis of Crohn's. We talked to her about Addy's unusual and severe symptoms of a flare and their decision to use the Specific Carbohydrate diet to treat her disease for several years. We talked about the ramifications of using this diet including the cost, the time, and the impact that it had on family traditions and culture. We talked about how Nicole, Addy, and the rest of the family incorporated the SCD and these changes and needs into their daily routine and how they coped as a family. Finally we talked about how parents can also experience medical trauma as part of the process of their child having a chronic illness and about how parents can care of themselves while also caring for their child with IBD. In Nicole's case her own diagnosis of an autoimmune condition- Lupus- forced her to understand her need to care for herself as well as her family.

We had a deep and impactful conversation with our friend Nicole as well as some laughs. We know that you'll be inspired by her and her daughter Addy too.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Nutritional Therapy for IBD- great source of info in diets and IBD
Info on the Specific Carbohydrate Diet- Nutritional Therapy for IBD
Diet info from the Crohn's & Colitis Foundation- USA
Info on Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
Community & Support programs- Crohn's & Colitis Foundation- USA
IBDesis- South Asian IBD Alliance's support program
Info on Toxic Megacolon- Stanford Children's Hospital

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This week we met Victorien Madsen! Victorien lives in The Netherlands and was diagnosed with UC after the birth of her 2nd child. We talked to her about navigating this new disease while parenting young children. Trying to find the right treatment option and finally finding the Specific Carbohydrate Diet before the internet was really even a thing. We talked to her about how she incorporated that diets into her life and her family's routine. We talked to her about modifying recipes and how she learned to create delicious foods for herself. We discussed how she started volunteering to run a support group for people with IBD who are interested in using diet to complement their treatment and finally how all of that led her to start volunteering with Nutritional Therapy for IBD.

lease keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Nutritional Therapy for IBD
An article about Victorien and her diet journey- in Dutch!
Curing Food- Victorien's website- in Dutch!
Victorien's pecan waffle recipe
Nutritional Therapy for IBD's Diet comparison chart

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This week we had such a great conversation with Kate Scarlata, MPH, RD! Kate is a Boston-based registered dietitian and New York Times best selling author with 30+ years of digestive health experience. Kate is a world-renowned low FODMAP diet expert and invited speaker on the role of food intolerance in GI disorders at numerous international and national gastrointestinal health conferences from Harvard Medical School to Monash University. She specializes in digestive health including treatment for: IBS, celiac disease, inflammatory bowel disease, mast cell activation syndrome and small intestinal bacterial overgrowth (SIBO).

We talked to her about so many things! We discussed patients that have co-occurring IBD and IBS- how frequent that is and how to best treat them. We talked about food intolerances, intolerance testing, and elimination diets. We discussed medical equity and her efforts to highlight the lack of medical diet-friendly- like for celiac- food offered in food pantries. We talked about common myths surrounding gut health that she asks her guests on her podcast called The Gut Health podcast to discuss. Finally we discussed her new book that she co-authored with Dr. Megan Riehl called "Mind Your Gut: The Science-Based, Whole-Body Guide to Living Well with IBD."

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Kate's Blog that she mentions
Kate and Megan's book
Dr. Megan Riehl's episode
Kate and Megan's podcast -The Gut Health Podcast

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This week we spoke to Rocio Castrillon- better known for her popular Instagram account @VoiceforIBD! She shared her story of being diagnosed with Crohn's disease and how a lack of information caused her to suffer in silence with fistulizing disease. We talked to her about finally getting involved with Team Challenge with the Crohn's & Colitis Foundation in the USA and how that helped her find a large community of other people living with IBD. The opened up other volunteer opportunities and so we talked to her about the many ways that she's gotten involved with the community including advocacy work, leading a Spanish-speaking support group, educational initiatives, and more. We especially discussed her support group that includes people from many parts of the world and what are some commonalities she's observed and the people she helps. Finally we talked about how all of her advocacy work and involvement led her to being nominated for the National Board of Trustees for the Crohn's & Colitis Foundation here in the US. We discussed how she's using this seat at the table and this platform to raise even more awareness of the needs of the Hispanic/Latino IBD community and so much more.

We really loved getting to know Rocio more during the conversation and we know you'll appreciate all that she does for our community as well!

Links:

Crohn's & Colitis Foundation - Hispanic Facebook Support Group
Article by Rocio in Crohn's & Colitis 360
Crohn's Disease Patient Experiences and Preferences wit Disease Monitoring: An International Qualitative Study - Crohn's & Colitis 360

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This week we had a great conversation with Mason Milne! Mason is the host of the Crohn's and Autism Awareness Advocate podcast! We talked to him about being diagnosed with Crohn's when he was 17 years old and a bit about the health system in the UK where he lives. We talked about what it's been like navigating the healthcare system with autism and advocating for his needs. Mason gave some advice for other people living with autism that may also need to communicate their specific needs or preferences to their healthcare team. We talked a lot about his podcast, the unique series that he does, and how he recruits guests- including some famous ones! And finally we discussed his love of the show Dr. Who and how attending conventions has lead to him recruiting some very cool guests to his show!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Mason's YouTube channel
Mason's episode with the 8th Doctor- Paul Magan
An interview with Mason about living with Crohn's and Autism- Crohn's Colitis UK

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This week we had a great time getting to know Dr. Kim S. Beall! Kim is a Doctor of Pharmacy whose son was diagnosed with Crohn's disease when he was 13 years old. After she and her son discussed his treatment options with his healthcare team and they did some research he decided to try Exclusive Enteral Nutrition (EEN) to get his Crohn's in remission. We discussed how Kim and her family supported him during this time and how he coped with being on this very restrictive diet. Nutrition has been central to Kim's son’s management of Crohn’s disease since his diagnosis in 2013 at age thirteen. Nutritional therapy has been an essential part of providing optimal care and has afforded him the best opportunity to manage life with Crohn’s disease successfully.

After her son achieved remission, she and her husband, Anthony Beall who is a physician, realized that there really was a lack of information about dietary therapies for IBD, that many healthcare providers didn't really know where to look, and that there was a huge need for a repository of this information. So they started the nonprofit organization Nutritional Therapy for IBD in 2019 to fill an essential void in providing evidence-based knowledge, tools, and resources to empower patients and aid clinicians seeking to leverage nutrition alongside medications in inflammatory bowel disease. Their mission is to establish evidence-based nutritional therapy as a foundational part of IBD treatment to enhance the well-being and health outcomes of all children and adults with Crohn’s disease or ulcerative colitis. We empower clinicians and patients with essential, current, comprehensive, educational, and innovative resources. We talked to Kim about starting this nonprofit, some of the great tools available for patients and clinicians, the recipe database, and how her nonprofit has been received by the medical community.

We were so inspired by Kim's passion and the all of the great things that Nutritional Therapy for IBD is doing.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

The Diet Comparison Chart discussed in this episode- Nutritional Therapy for IBD
Information for Healthcare Professionals- Nutritional Therapy for IBD
Recipe Database
Abigail Marie- The Chef with IBD's episode- volunteer with Nutritional Therapy for IBD
Nicole Pavlin's episode- volunteer with Nutritional Therapy for IBD
Barbara Olendski's - RD- video
Information on Exclusive Enteral Nutrition- Nutritional Therapy for IBD

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This week we had such a great conversation with Dr. Megan Riehl! Dr. Riehl is a GI Psychologist, Assistant Professor of Medicine and the Director of GI Behavioral Health at the University of Michigan. We talked to her about all things IBD and mental health and how she helped to establish and incorporate GI behavioral health into the IBD center at the University of Michigan. We also talked to her about her interest in innovations in digital therapeutics, how she's worked with some developers to ensure the efficacy and quality of their products, and what apps that she recommends to patients as well as providers. We talked to her about her new book! It's called "Mind Your Gut: The Science-Backed Whole-Body Guide to Living Well with IBS." While this book is geared for people living with IBS, there is some really great information in there for people living with IBD as well and we discussed this with Dr. Riehl as well. Finally we went over some additional virtual resources that she finds helpful for patients. We really enjoyed talking with Dr. Riehl and we know you'll learn so much from her as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

The Gut Health Podcast- Dr. Riehl and Kate Scarlata, RD's new podcast!
Dr. Meredith Craven's episode
Info on the Nerva app
Curable app for chronic pain
Mahana IBD app
Diaphragmatic breathing video
Dr. Brennan Spiegel's book- "VRx: How Virtual Therapeutics Will Revolutionize Medicine"

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This week we talked to Abigail VanHoose- otherwise known as Abigail Marie the Check with IBD! Abigail was diagnosed with UC after a bad car accident and after she finished culinary school. Her disease journey was definitely rocky and very impacted by substandard medical care. Like may people living with IBD, she was told that "diet doesn't matter" but after dealing with multiple flares, she found the book "Breaking the Vicious Cycle that outlines the Specific Carbohydrate Diet and how it can be helpful for people with IBD. She decided to give it a try but found the recipes to be....less than exciting. She decided to put her culinary talents to work and started coming up with new recipes that followed the diet and than led her to decide to share her knowledge in her blog. We talked to her about following the SCD, how she creates the recipes, what she includes on her blog, and her favorite recipes. We also talked to her about her work with the nonprofit Nutrition Therapy for IBD and how she's been able to help them grown their recipe database, expand their social media, and much more. Finally we go on a rant about the medical system, steroids, and medical education. If you've listened to previous episodes, you know this is unsurprising. We had a great time hearing from Abigail, we know you will too and we're all set to try some of her yummy-sounding recipes. Cheers!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Abigail's Blondie recipe
Abigail's Coffee "Ice Cream" recipe
Abigail's Strawberry Cupcake with Vanilla Icing recipe
Nutrition Therapy for IBD

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This week we talk to Kim Braly, RD! Kim is a Registered Dietitian that specializes in IBD, consults on nutrition and IBD-related research studies, has expertise on IBD nutrition program development and educates practitioners on nutrition therapies for IBD. She is currently in private practice seeing adults and kids living with IBD virtually across the country. Previous to this she was part of the IBD Center at Seattle Children's Hospital where she saw patients as well as developed and participated in research studies on nutrition therapies for IBD. We talked to her about what it was like to develop these studies and how challenging it is to control for all the potential changes that can happen when participants are cooking their own foods. We talked about the Specific Carbohydrate Diet and how she talked to patients about the expectations and prepared them to take it on. We also talked about the efficacy of several diet therapies. We also discussed health and economic disparities and how these might affect the ability of some families to consider dietary therapies and the lack of insurance coverage to help. Finally we talked about the website that she developed with a woman living with Crohn's disease who was her patient at Seattle Children's called Eats for IBD. This website provides much-needed nutrition support and practical resources to those with IBD including educational sessions, support options, and delicious recipes that are friendly to dietary therapies. We had a lot of fun talking with Kim and we learned so much too! Cheers!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Eats for IBD website
Kim's private practice website
ImproveCareNow
Nutrition Therapy for IBD website
Find an IBD-Focused Dietitian- Crohn's & Colitis Foundation- USA
Find an IBD-Focused Dietitian- Academy of Nutrition and Dietetics - USA

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This week we had such a great conversation with Courtney Walls! Like several of our guests, Courtney had a pretty dramatic introduction to the IBD community including needing urgent surgeries, C-diff infections, fistulizing disease, and she's now living with an ostomy (happily). We talked to her about going through all of that while also living with anxiety and how she's processing it using mental health therapies like CBT and internal family systems and going through the Employee Assistance Program through her work. Courtney also started a very successful Instagram account about her Crohn's journey called courts_crohns_corner. We talked to her about what it was like putting her story out so publicly, how different it is to be talking about her disease and her treatment decisions in real time versus sharing past history, and about how she's using her account to give support to others while also getting some herself. Finally we discussed her love to Charles Barkley and Arizona.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

What is Internal Family Systems Therapy
What is C.Diff- Centers for Disease Control
Understanding C.Diff Infection- video from the American Gastro Association
Our episode with Courtney Robert, LCSW about EMDR
Our episode on what EMDR is like as a patient with friend of the show, Hannah C.
Learn about Team Challenge- Crohn's & Colitis Foundation USA
Learn about living with an ostomy, finding support, and more- United Ostomy Association

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This week we had a great conversation with Stephanie Brenner! Stephanie is a Licensed Clinical Social Worker at Chronic Illness Psychotherapy in Evanston, IL who has 13 years of experience working with clients with chronic illnesses. Through her journey as an IBD patient and clinician, she has developed a passion for helping people with health challenges live their lives to the fullest. We talked to her about how living with her IBD helped her develop a passion for being a therapist for kids and adults with chronic illnesses. We also discussed doing therapy with kids, medical hypnotherapy, medical gaslighting and how she works with people as they take on a new identity as they cope with a new diagnosis. We also discuss the guide for parents of kids with Crohn's that she wrote in coordination with Tina Aswani-Omprakash (Own Your Crohn's, SAIA, etc!). We spent a while talking about how she works with patients who may need to address challenges with healthcare providers who they need to remain connected to. We discussed so many aspects of mental health and tapped into Steph's professional experience and brain that we'll have to bring her back to talk more about her IBD and living with an ostomy!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

The Circle of Care Guidebook for Caregivers of Children and Adolescents Managing Crohn's Disease
Find Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation USA
Resources from ImproveCareNow- for kids with IBD
Find an IBD trained therapist- Rome GI Psych
Episode with Dr. Meredith Craven about hypnotherapy
Episode with Robin and Hannah Cramer about doing EMDR
Episode with Courtney Robert, LCSW about EMDR

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Warning that this episode discusses eating disorders, disordered eating, and medical trauma. This week we spoke with Dr. Jordan Shapiro! Dr. Shapiro is a GI Hospitalist at Peak Gastroenterology Associates in Colorado as well as a private practice GI at Gentle GI in Houston, TX (starting April 1, 2024). Dr. Shapiro also is a yoga instructor and enthusiastic practitioner and so we spend quite a bit of time learning about the practice of yoga that goes beyond the body movements we're probably all familiar with and how adding yoga to your care may be beneficial. He also has expertise in working with patients with eating disorders or disordered eating as well as in trauma-informed care. We talk to him about how he approaches patient care in a empathetic way and how he works with patients who have identified trauma experiences that may impact their care. We also talk to him about how he uses this knowledge and experience to help other providers learn how to create a safe environment for people who may be struggling with trauma responses. We really enjoyed this conversation with Dr. Shapiro and think you'll learn a lot from him as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Dr. Tiffany Taft's episode- discusses her research on medical trauma
Yoga and Meditation video- GI Research Foundation
Interesting research article on medical trauma- among the authors is former guest Mara Shapiro- by the Crohn's Colitis Young Adult Network (CCYAN)
Diet, Culture, and Your Body- Crohn's & Colitis Foundation- USA

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This week Alicia was joined by guest host and past guest, Derek Dodson! They interviewed Jordan B. McConnell! Jordan is a Air Force veteran, IT professional, father and husband who also lives with Crohn's disease! We talked to him about being diagnosed as a young teen and how his disease was presented to his family and how he was able to join the military and how that affected his ability to continue in his military career. Jordan is also the creator and one of the hosts of the Crohn's Veteran podcast and lifestyle brand. We talked to him about creating the show, recruiting his co-hosts, and all of the amazing guests that they were able to interview as well as the community they created around the show. We also discussed coping with IBD as a male and how that may create situations where one may feel stifled in expressing needs and so much more. We had such a great conversation with Jordan and we can't wait for you to get to know him as well.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Jordan's instagram
Jordan's interview with Amber Tresca at About IBD podcast
Crohn's Veterans website

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This week we had the absolute pleasure to talk to Dr. David Binion! Dr. Binion is a physician-scientist who is also living with Crohn's disease. He is Co-Director of the IBD Center at the University of Pittsburgh School of Medicine. He was diagnosed with Crohn's when he was a teenager- before the information age and also before there were many treatment for IBD. He has devoted his career to analyzing "Big Data" to figure out how to predict disease outcomes, prognosis and flares. We talked to him about his longitudinal research, what he's learned, and how that's given him hope as an IBD patient. We talked to him about what he's seeing in reclassifying IBD into more subcategories and what that will mean for more effective treatment and also what he sees on the horizon for IBD research.

We enjoyed getting to know Dr. Binion so much and know that you'll find this conversation as interesting and hopeful as we did!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Link:

Dr. Binion's page on winning the Sherman Prize in 2018

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This week we talked to Registered Dietitian, Amalia Karlin! Amalia experienced symptoms very similar to UC but she struggled to get a diagnosis. Eventually her symptoms got to be so severe she had to have a colectomy and now lives with an ostomy. After that she decided that she as going to devote her career to helping other people living with ostomies to maximize their nutrition and live their best lives. We also talked to her about life with an ostomy, the healthcare system in Canada, and experiencing pregnancy with an ostomy. She has a very dramatic story but we think you'll love meeting her as much as we did

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Diet & Nutrition- United Ostomy Association
Nutrition for Ostomy Patients - video- University of Miami
Food reference chart for people living with ostomies- United Ostomy Association

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Welcome to our 100th episode! This week we talked to the renowned Dr. David T. Rubin! Dr. Rubin is the Joseph B. Kirsner Professor of Medicine and a Professor of Pathology, Chief of the Section of Gastroenterology, Hepatology & Nutrition and the Co-Director of the Digestive Diseases Center at The University of Chicago Medicine.

He also currently serves as an associate faculty member at the MacLean Center for Clinical Medical Ethics, an associate investigator at the University of Chicago Comprehensive Cancer Center and is a member of the University of Chicago Committee on Clinical Pharmacology and Pharmacogenomics. He is the chair of the National Scientific Advisory Committee of the Crohn’s & Colitis Foundation, where he also serves as a Board of Trustees member. He is the deputy chair of the Executive Committee of the International Organization for the Study of Inflammatory Bowel Disease. In 2018, Dr. Rubin completed the Harvard T.H. Chan School of Public Health Leadership Development Course for Physicians.

Dr. Rubin is a Fellow of the American Gastroenterological Association (AGA), the American College of Gastroenterology (ACG), the American Society for Gastrointestinal Endoscopy (ASGE), the American College of Physicians (ACP), and the Royal College of Physicians (Edinburgh). He is on the Board of Trustees for the ACG. Among numerous awards and honors, Dr. Rubin was chosen by his peers as a member of Best Doctors (recognized for superior clinical ability) and America’s Top Physicians (gastroenterology). Additionally, he twice received the ACG’s Governor’s Award of Excellence in Clinical Research (2003 and 2013), and the UChicago Postgraduate Teaching Award in recognition of significant contributions for fellowship education (2006). In 2012, he received the Crohn’s & Colitis Foundation’s Rosenthal Award, a national leadership award bestowed upon a volunteer who has contributed in an indisputable way to the quality of life of patients and families. He is an Associate Editor of the journal Gastroenterology and Editor-in-Chief of the ACG On-Line Education Universe. In 2020, Dr. Rubin received the Sherman Prize for Excellence in Crohn’s and Colitis.

Dr. Rubin is an editor of a best-selling book Curbside Consultation in IBD which is now in its 3rd edition and an author or coauthor of over 500 articles on treatment and management of IBD, cancer in IBD and novel paradigms, as well as the first author of the 2019 ACG Guidelines for ulcerative colitis. His current research is in the area of novel approaches to monitoring of IBD (wearables and point of care intestinal ultrasound), prevention of progressive complications from uncontrolled inflammation, and a variety of collaborative and translational studies related to the causes of IBD and its complications.

Episodes from some of Dr. Rubin's UChicago's team:

Dr. Alysse Bedell- Gastro Psychologist
Michele Rubin, APN- JPouch surgical nurse extraordinaire
Marita Kametas- Ostomy Specialist!
Dr. David Choi- IBD Pharmacist

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment.

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This week we spoke to Liam Robertson! Liam was diagnosed with UC when he was a young adult but the process was lengthy and filled with times when he was not believed. We talked about what that was like to navigate the health system and his feelings on it. We discussed how he got so involved in social media, how that's helped him cope with flares and complications, and the importance of having a community around you. We also talked about the books that he's written including "More Than Meets the Eye: Living with Ulcerative Colitis" and the kids book series about Jack Jupiter who is a child living with IBD. We talked about what prompted him to write the books and the response he's gotten from people all over the world. We also discussed his job on an oil rig and what that's been like for him to be so far away from medical care with UC. And finally we spoke about him training in muay thai- what got him interested and more. Liam was so much fun to talk to! Go check out his books.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links"

Liam's book- "More Than Meets the Eye: Living with Ulcerative Colitis"
Liam's newest Jack Jupiter book- "Jack Jupiter- Reindeer Rally"
Find all of his books here.

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This week we spoke to Michele Rubin! Michele is an advanced practice nurse and is the Associate APN Director of the IBD Center at the University of Chicago Medicine. She specializes in surgery for IBD and has helped to create a J-Pouch specific clinic. We talked to her about surgery part of the treatment options, J-Pouches and what to expect in recovery, and how she works with patients to ensure they have the best outcomes. We also discussed the research that she's done related to IBD surgery and their efforts to try to predict a patient's response to their J-Pouch and how to treat complications. Finally we talked about how and why a surgeon may choose to hand sew instead of use surgical staples. Michele has been in the IBD space for a long time and has so much knowledge to share and she was such a joy and a light. We could have talked to her for hours.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

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This week we talked to Ashley Mann! Ashley was diagnosed with Crohn's disease when she was 20 years old but she had been experiencing symptoms when she was in high school. We talked to her about what it was like being a competitive cheerleader with active disease. We talked to hear about what she describes as trying "every medication on the market" and navigating countless surgeries. We discussed her decision to move to a permanent ileostomy and how close she is to living with short-gut syndrome. We talked about how she's had to learn to manage her healthcare and advocate for herself while moving frequently because of her husband's career in the military. We also talked about what it was like to get her care in the military healthcare system and her experience with friend-of-the-show, Dr. Anish Patel. Finally we talked about the importance of making healthcare decisions that you feel are right for you even in the face of differing opinions from the people most important to you.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Our episode with Dr. Anish Patel
A video about Short Bowel Syndrome- Canadian Society for Gastrointestinal Research

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This week we had the pleasure of talking with Bianca Hernandez! Bianca was diagnosed with Crohn's disease in 2015 and she almost immediately parlayed her diagnosis into advocacy for her community. She worked with her school system to get better access to the private bathroom at her school and rallied and inspired other students affected by IBD to advocate for this in their schools. She was selected to join the National Council of College Leaders program at the Crohn's & Colitis Foundation- USA which allowed her to lead in many other advocacy initiatives including step-therapy reform and Ally's law and to work on ensuring that educational materials developed were properly translated into Spanish. This program also introduced her to life-long friends and other inspiring young people in the IBD Community. We talked about her advocacy work and how her efforts to ask for what she needed lead her to becoming a fierce advocate for the whole IBD community. We discussed the perils of comparing your healthcare decisions and disease with other people's journeys and how to destigmatize medical decisions and to not compare yourself to others. We discussed how IBD impacts the Latinx community and ideas on how to raise awareness about IBD and colon cancer screening within these communities. Bianca was so much fun to talk to and is so inspiring. I know you'll find her passion as infectious as we did.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Information on the National Council on College Leaders- Crohn's & Colitis Foundation- USA
Crohn's & Colitis Foundation- homepage in Spanish
Ally's Law/ Restroom Access Law- Crohn's & Colitis Foundation- USA
Information about Step Therapy- Crohn's & Colitis Foundation -USA

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This week we had such a great conversation with Dr. David Schwartzberg! Dr. Schwartzberg is a double-board certified colorectal surgeon at Mather Hospital and Columbia specializing in IBD, pelvic floor conditions, re-operative colorectal surgeries, J-Pouch disorders, and minimally invasive surgical techniques. We talked to him about his passion for colorectal surgery and how he spends any free time he has that's not with his family researching and learning more about it. We talked to him about his drive to find a career that helped people and had a true impact on the world. We discussed his interest in J-Pouches and improving complications that may come with previous surgeries. We explored how some folks that had been diagnosed with UC to start may now have a Crohn's diagnosis post J-Pouch and also upper GI Crohn's disease. We also talked about his love of music and how he and his wife have fostered that love in his 3 boys. We also talked about many other things including the improved technology in buckets but I cut that part out. Needless to say we laughed, we cried, we went off the rails but I promise you're getting the best part. We don't think Dr. Schwartzberg could be more more passionate about caring for people living with IBD and their families and we can't wait for you to hear that in this conversation too.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Learn more about Dr. Schwartzberg in this video
Dr. Schwartzberg explains 3-Part J-Pouch surgery in this video- Empowering Patients LLC
Special Concerns for People with J-Pouches- UCSF Health
When Should Chronic Pouchitis be Treated as Crohn's Disease?- Crohn's & Colitis Foundation USA

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This week we had the pleasure of getting to know Alex Boyd! Alex was diagnosed with UC when she was 26 years old when she thought she had caught a stomach bug that had gotten very aggressive. It was only 2 weeks after her diagnosis that she was advised to have her colon removed and to start her J-Pouch surgery process. We talked to her about the dramatic way that she was introduced to our community and how she worked with her medical team to make this decision. We talk to her about the issues that she's experienced with her J-Pouch and how she's coping with that. We talked to her about how she's focused on her mental health to help with her coping skills and also how she's worked with her employer to get the accommodations that she needs to be the best employee she can be. We also spoke about how living with an illness like this can lead you to examine your life and your relationships and how that can lead you to making some big, and at times scary choices to allow you to grow and lead the life you deserve. We really enjoyed hearing Alex's perspective and all that she's learned and we know you will too.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

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This week we spoke to Adam Finkelstein! Adam was diagnosed with UC when he was just 2 years old. We talk to him about what it was like growing up with UC and dealing with it as a child. We spoke about how his experiences with the medical system prompted his interest in writing a children's book for other kids with IBD called "Up and Adam: A Patient's Experience on Winning with IBD." Also how it sparked his interest in becoming a physician and especially a surgeon. Finally we talked about Adam's experience as a Camp Oasis counselor, how he was able to share his book with all of the kids this summer, and what their reactions were and the conversations it started. Adam was a joy and we think he'll make an extremely empathetic doctor some day soon!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Find Adam's book on Barnes & Noble
Adam's episode on the About IBD podcast
Adam's email- AdamIBDStory@gmail.com

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Warning: This episode discusses sexuality, sexual health and sexual trauma and may not be appropriate for all audiences. This week we spoke to Dr. Alyse Bedell! Dr. Bedell specializes in psychogastroenterology and is a sexual health counselor at the University of Chicago IBD Center. She has specialized training and knowledge in how stress, anxiety and depression can affect digestive health. Dr. Bedell works with patients struggling with a range of gastrointestinal conditions, such as inflammatory bowel disease. and using her expertise to help her patients cope with their condition and improve their gastrointestinal symptoms. Dr. Bedell is able to assist patients in better understanding and managing their symptoms through a holistic approach that addresses both physical and emotional components.

We spoke to her about sexual health and IBD including how sexuality can be affected by IBD and disease symptoms. We talked about intimacy and how people with IBD can increase their intimacy with their partners, working with people in the LGBTQI+ community, working with people who have experience sexual trauma and how to educate providers in responding empathetically to that experience, and so much more. This was such an interesting and educational conversation.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

AASECT- American Association of Sexuality Educators, Counselors and Therapists- find a sexual health therapist.
Sex and Intimacy Fact Sheet- Crohn's & Colitis Foundation- USA
Sex and Relationships- Crohn's & Colitis UK

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This episode includes discussions about suicide and suicidal ideation and may not be appropriate for some people.* This week we had a really deep conversation with our friend Derek Dodson! Derek has been living with Crohn's disease for 40 years and so we talk to him about what it was like to live with Crohn's before there were any good treatment options, what it was like being a teenager on steroids, and what is has been like to see so much scientific and treatment advances. We discussed his family history with IBD including his grandfather's "ileitis" and his daughter Maurie Jhaveri's diagnosis and how her diagnosis compelled him to get more involved in the IBD community. We talk about his strong Christian faith and how it has been a source of comfort and solace during his hardest times but also how it has changed his faith, how he prays, and how it helped him come up with his life motto of "make it count." We also talked about how living with Crohn's for so long, multiple surgeries, and all his treatments have had lasting impacts on his health in other ways including some vitamin deficiencies. Finally we discuss how Derek's IBD has affected his mental health including his coping with suicidal thoughts and some very significant hopelessness. And how his faith, his family, his community, and working with a therapist has helped him cope and reframe living with his disease.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

National Suicide and Crisis Lifeline- If you or a loved one is struggling with suicidal thoughts, please call 988- US only
A list of international suicide helplines
Resources for Mental Health- Crohn's & Colitis Foundation- USA
Find a therapist familiar with IBD- Rome Foundation

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This week we spoke to Dr. Edward L. Barnes! Dr. Barnes is a gastroenterologist and clinical investigator dedicated to improving the care of patients with inflammatory bowel disease at the University of North Carolina School of Medicine. Dr. Barnes is also the 2021 Sherman Emerging Leader Prize Recipient. He has a particular interest in improving outcomes for patients with inflammatory bowel disease who require a colectomy and an ileal pouch-anal anastomosis. Patients with an ileal pouch-anal anastomosis may experience significant complications after surgery, including the development of new inflammatory conditions of the pouch. Dr. Barnes has developed multiple new research strategies to identify risk profiles for those patients at greatest risk for adverse outcomes and strategies to improve the effectiveness of available therapies for pouch-related disorders.

We talked to him about his research and work on pouch disorders.

Links:

Dr. Barnes won the 2021 Sherman Emerging Leader Prize!
Information about J-Pouch surgery and possible complications- Crohn's & Colitis Foundation USA
Special Concerns for People with J-Pouches- UCSF Health

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This week we talked to Myisha Malone-King! Myisha is the brains and moderator behind the Facebook group Game of Crohn's n Chronic Illness! The goal of this group is to offer support and knowledgeable information about inflammatory bowel disease and to inspire others to not be afraid or hide because of a chronic illness. We talk to her about what discussions happen on the page and how it's helped her to support and educate other people living with IBD. We discuss her diagnosis process and how her Crohn's affected her pregnancies and how that led to her considering an abortion. We talked to her about everything that she considered as she made that decision and how difficult it was knowing that her health and her life could be so incredibly impacted by it. We talked to her about the pain she experiences with her Crohn's and how difficult it was to find a doctor that would believe her and help find the right treatment plan. We talked to her about grief and the grief that goes along with living with a chronic illness. Finally, we talk about journaling and writing poetry as a way to process living with a chronic illness. We discuss Myisha's new book of poetry called "Footprints of the Soul", where you can find your copy, and she reads us one of her beautiful poems.

This was such a great conversation and Myisha is a treasure.

Just a warning that we discuss abortion in this episode so it may not be appropriate for all audiences. Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

We reference our episode with Nicole Williams, LPC. You can find it here.
Myisha's Twitter account
Myisha's book- Footprints of the Soul
Chronic Illness and Grief: The Dual Process Model of Coping with Loss- Psychology Today by Katie Willard Virant MSW, JD, LCSW- Chronically Me
Myisha on the Patients Rising show- Medical Gaslighting and Self Advocacy

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This week we spoke to Marita Kametas, MSN, APN, FNP-BC, CMSRN, COCN! Marita is an Advanced Practice Provider Leader, IBD APN, and Ostomy Specialist in the IBD Center at the University of Chicago. We talked to her about all things ostomy! We discussed how providers can speak to patients about all of their treatment options including surgery and ostomies and how that language can really help to make patients feel more comfortable and in control. We talked about how she helps patients prepare for surgery and to deal with ostomies after surgery. We discussed the research she's doing into new ostomy technology and what she'd love to see advance in this area. We also talked about pregnancies with ostomies, complications one can have with an ostomy and so much more. It was super interesting and I think you'll learn just as much as we did.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

United Ostomy Association of America
A Guide to Ostomy Bag Care - includes videos! UChicago Medicine
Ostomy Tips & Tricks- Crohn's & Colitis Foundation USA
5 Tips for Navigating Life With an Ostomy- Katelyn Wilson, RD- GastroGirl

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Warning that this episode includes an open discussion about sexuality and may not be suitable for all audiences.
This week we talked to the lovely Julia Gaspare-Pruchnicki! Julia is a medical student that was initially diagnosed with UC when she was 9 years old. She went on to have a colectomy and J-Pouch when she was 10 years old. After struggling with pouchitis and fistulas, Julia's diagnosis was changed to Crohn's disease. We talk to her about the treatments she's tried for her fistulizing disease including clinical trials with stem cells. We discussed the accommodations that she took advantage of when she was doing her undergraduate degree as well as medical school and how that has helped her having piece of mind. We talk to her about her passion for becoming a family medicine doctor and how she feels like she can use what she's learned from her Crohn's to help other people navigate their health. We discuss her mom's UC and J-Pouch and how that helped her feel like she had a partner and advocate as she navigated her disease. And finally we had a really frank conversation about how IBD and especially fistulas can affect your sex life and sexuality. We really appreciate Julia's willingness to be so open with this part of her life and her disease.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Sex and Relationships- Crohn's & Colitis UK
Sexuality and IBD- video from Canadian Society of Intestinal Research
Perianal Fistula and Crohn's - video from Mayo Clinic

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This week we spoke to IBD and Rare Disease advocate, Aaron Blocker! Aaron lives with Crohn's disease as well as an ultra-rare disease called Hypophosphatasia. We talked to him about managing both illnesses and coordinating his care. We talked to him about how he set up his very popular and informative Facebook community called Support for Crohn's & Ulcerative Colitis and how he monitors this page to keep the conversations informative, supportive, and as accurate as possible. We also talked to him about his degree in biomedical research and how he uses it to help translate complicated scientific information for the patient population and to help educate our community. Additionally this has helped him engage with the pharmaceutical and scientific community professionally to help with patient education, marketing and much more. Finally we talked to him about parenting his three very small children, including twin babies (!), while living with two chronic illnesses.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Support for Crohn's and Ulcerative Colitis Facebook page
Information on Hypophosphatasia- National Organization for Rare Diseases
Aaron's page from IBD Social Circle
IBD Dads: What These Patient Heroes Have to Say About Fatherhood- Lights, Camera, Crohn's Blog- Natalie Hayden
Natalie Hayden's episode
Fatherhood and IBD with Jordan McConnell- About IBD Podcast with Amber Tresca (Look for a BM episode with Jordan soon!)

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This week we had such an interesting and fun conversation with Dr. Meredith Craven! Dr. Craven is a licensed health psychologist and she's the Director of GI Health Psychology in the Division of Gastroenterology and Hepatology at Stanford Health. We spent quite a bit of time talking about gut directed hypnotherapy and other brain-gut behavioral health techniques. We also had a really interesting discussion about Dr. Craven's research and work on health disparities and diversity, equity, inclusion, and justice. We also talked about her interest in and practice of yoga and how she's helped her patients use it as well as diaphragmatic breathing and mindfulness to manage their IBD.

We could have talked to Dr. Craven for hours and hours. I hope you learn as much as we did from this conversation!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

A body scan meditation video with Dr. Craven
Coping Strategies to Improve Mental Health- Crohn's & Colitis Foundation-USA
Racial Disparities Seen in Use of IBD Medical Therapy- Gastroenterology & Endoscopy News
How Healthcare Algorithms and AI Can Help and Harm- Johns Hopkins Bloomberg School of Public Health

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This week we brought back friend of the show and former guest, Hannah Cramer! Hannah and Robin have both been using Eye Movement Desensitization and Reprocessing (EMDR) to help them with their medical trauma. EMDR is a psychotherapeutic technique used to help people process and recover from trauma and problematic traumatic memories that may interfere with life. They've found EMDR to be incredibly helpful and very quick to alleviate some really significant anxiety and trauma associated with their disease and with their experiences with the medical system. We discussed how the process has worked for them, what to expect if you're considering this, pros and cons to this technique, and how they've talked to others about it. It was super interesting to hear their different experiences but also so encouraging to hear how it helped them.

If you want to know more about EMDR from a therapist that uses it with IBD patients, please go back to episode 33 with Courtney Robert. If you want to hear more of Hannah's story, go back to episode 13.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

What is EMDR? - From EMDR Institute, Inc.

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This week we had such an informative conversation with Dr. David Choi! Dr. Choi is a Specialty Clinical Pharmacist and the Associate Director of the IBD Center at UChicago. We talked to him about his role as part of the IBD care team and how he plays an important part in patient advocacy and in getting the patient the treatment they and their provider think is best. We discussed his research in pharmacist-initiated interventions and prior authorizations and in other insurance issues in patient care and what they learned from this work. We talked a lot about biologic medications and biosimilars and what patients should know about these options and about switching to one. We also discussed supplements and how your pharmacist can help you figure out what is safe for you to use or what might have medication interactions. Finally we talked to him about training new or more pharmacists to do specialty IBD care and about networking with other IBD Pharmacists through the IBD Pharmacist Network. This was such an interesting conversation and I think you'll learn as much as we did.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Biosimilars: What You Should Know- Crohn's & Colitis Foundation- USA
Biologics and Biosimilar Medications for Inflammatory Bowel Disease- Crohn's Colitis Canada

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This week we spoke to Nicole and Luke Pavlin! Nicole is living with Crohn's disease and Luke is her husband and care partner. We talked about the process for her to get diagnosed and the unusual birth defect she has that complicated her case. We talked about her ongoing struggles with food anxiety and medical trauma and how the GRITT- IBD program and staff have helped her cope. We talked to her about how her Dietitian and her mental health team have worked together to help her. We talked about her participation in a couple of research studies being put on by Mount Sinai including one with wearable devices. Nicole talked about why participating in these types of studies was especially important to her as a science educator and to help her feel like she was helping others. We also talked about her volunteer role with the nonprofit Nutrition Therapy for IBD.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Wearable Devices and IBD: Hear One Woman's Experience as a Citizen Scientist
Mount Sinai IBD Center Innovative Programs (GRITT)
Nutritional Therapy for IBD
Meckel's diverticulum

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This week we talked to Nir Solomon! Nir is the Founder and Director of the Integrative Gastroenterology unit at Sheba Medical Center in Israel. He's also the Co-Founder and Head of R&D at Evinature. Nir has done research for more than a decade on neutraceuticals for the treatment of IBD. We talked to him about his training in this area, what neutraceuticals are and how they and other types of integrative medicines are used in IBD care. We talked to him about how he chose the items that he decided to research and how he developed Evinature's CurQD protocol. We discussed the clinical trials that he went through and how this protocol can be helpful to the treatment regime of IBD. Finally we talked about research in Israel and why they may be able to research things that are not as readily studied in the United State. It was a really interesting conversation! Enjoy!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

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This week we talked to Dr. Michael Dolinger! Dr. Dolinger is an Assistance Professor of Pediatric Gastroenterology at the Icahn School of Medicine and Mount Sinai Kravis Children's Hospital. Dr. Dolinger leads the Henry and Elaine Kaufman intestinal ultrasound program at the Susan and Leonard Feinstein Inflammatory Bowel Disease Center, the first of its kind in the United States. We talked to him all about intestinal ultrasound and how revolutionary it is as a noninvasive tool to monitor disease activity and treatment response. It's seriously super cool and we had such an interesting conversation with Dr. Dolinger! We also talked to him about his very personal reason for going into pediatrics and focusing on Inflammatory Bowel Disease. Dr. Doling is a joy and we loved speaking to him more than eating a pint of ice cream.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Intestinal Ultrasound Ushers in New Era of IBD Treatment article- Mount Sinai
Exploring uses of ultrasound in monitoring and treating IBD- Crohn's & Colitis Foundation USA
Real Time Ultrasound of the Intestines video featuring Dr. Dolinger- Mount Sinai Health System YouTube channel

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This week we talked to Lori Plung! Lori has been living with Crohn's disease for more than 40 years and she has been living as fully and as well as possible. She's now been diagnosed with short gut syndrome and so we talk to her about what that is, what it's like, and how she uses TPN to optimize her nutrition and hydration. We also talked to her about how she came to leading a support group in partnership with UPMC and the Crohn's & Colitis Foundation and how that changed during Covid. We spoke to her about providing peer-to-peer support and the importance of community. We had such a great conversation with Lori and talked about so, so much more. I know you'll find Lori to be the ray of sunshine that we did!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Lori gets a shout-out in Tina's episode!
Information on short gut/bowel syndrome- Mount Sinai Hospital
Short Bowel Syndrome pamphlet- Crohn's & Colitis Foundation- USA
Information on Parenteral Nutrition (TPN)- Cleveland Clinic
Information on Lori's Support Group

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This week we met Kishore Pardasani! Kishore was diagnosed with UC when he was in college and struggled to find the right treatment for his disease. Eventually he decided to manage his disease through a permanent ostomy. As he was learning to navigate life with an ostomy he was underwhelmed by the tool available to help him track his supplies, measure his output, and manage his ostomy. That lead him to develop an app called OstoBuddy! OstoBuddy worked well for him and so he decided he needed to offer it to others living with ostomies. He applied for the Lyfebulb challenge addressing the unmet needs of the IBD community and was selected! We hear his whole riveting story, we brainstorm ways to improve ostomy supplies, we talk about the craziest thing he did after being diagnosed with UC, and what it was like to grow up in Barbados. It was such a fun conversation!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Press Release about OstoBuddy being selected for the Lyfebulb challenge
Ostobuddy App website
Osto Group
United Ostomy Association

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This week Alicia had a guest host! She was joined by friend of the show and past guest- Lauren Erbach Barnfield and they spoke to Dr. Abdul Aziz Elkadri! Dr. Elkadri is an Assistant Professor at the Medical College of Wisconsin where he specializes in pediatric IBD. We talked to Dr. Elkadri about his personal connecting to IBD, how he inadvertently chose GI as his specialty and why he prefers treating kids. We also talked to him about receiving his medical training in Lebanon and how that created some hurdles to him practicing in the US post training. We discussed his research into genetics and into very early onset (VEO) IBD and working with little kids (and their parents). We also talked about talking to teens about weight and eating when they have IBD and the impact of societal pressure/reward on weight. Lauren and Alicia had such a good laugh with Dr. Elkadri and always appreciate his irreverent sense of humor.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Listen to Lauren's episode!
Diet and Nutrition and IBD- Crohn's & Colitis Foundation- USA
Journal Article: "Very Early Onset Inflammatory Bowel Disease: A Clinical Approach With a Focus on the Role of Genetics and Underlying Immune Deficiences"
Article: "Practicing Medicine in the US as an international medical graduate"- American Medical Association

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This week we spoke to Sharan K.! Sharan lives in the UK and is the creator of the Crohn's Babble Instagram account as well as the Director of Digital Engagement at the South Asian IBD Alliance! We spoke to her about getting diagnosed and navigating her Crohn's in the UK's healthcare system. We talked to her about how challenging the system could be at times being of South Asian descent because of language barriers and lack of understanding around how the diet information may translate to her family's cuisine. We talked to her about finding information and community online and how that helped her when she was living with an ostomy. We also discussed the importance of self-care and how she helped to form IBDesis- which is a Facebook group for people of South Asian descent living with IBD- and how that prompted the formation of the South Asian IBD Alliance.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)Links:

Sharan's Instagram account- Crohn's Babble
South Asian IBD Alliance
IBDesis Facebook Group
Crohn's and Colitis UK

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This week we spoke to Barbara Cramer! Barbara has 2 children living with Crohn's disease. You met her daughter Hannah in episode 13 and this week you'll get to hear Barbara's side of some of Hannah's stories and experiences. Barbara's children were diagnosed at different ages- one as a teen and one has an adult- and have vastly different styles in how they cope with their disease. We talk to her about how she's handled these vastly different ways and how she's helped both of her children navigate this new world. We talked to her about leading a support group with Hannah for families affected by IBD. We discussed the helpful and not-so-helpful things that people say when you talk about having a kid with a chronic illness, were to find accurate information about IBD, and how important it is to know that you're not alone.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Hannah's episode!
Ways to find support including the Power of 2 and Support groups mentioned on the show- Crohn's & Colitis Foundation- USA
Tools to help parents of kids with IBD- ImproveCareNow

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This week we talk to Dr. Brad Pasternak! Dr. Pasternak is the Director of the Inflammatory Bowel Disease Program at Phoenix Children's Hospital. We talked to him about how his UC influenced his choice to go into pediatric gastroenterology and how he's coped with his disease. We talked to him about his medical training in Israel and the differences between the Israeli and American medical system. We talked to him about his research and how doing basic science research helped him realize how much he loves patient care and developing deep relationships with his patients and their families. Finally we discussed his volunteer project providing medical care to a small town in Mexico.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

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This week we had an entertaining conversation with Mara Shapiro! Mara was diagnosed with Crohn's disease fairly recently but has struggled with GI symptoms for quite some time. Her Crohn's was diagnosed after she was dealing with debilitating iron insufficiency. We talked to her about receiving iron infusions and how she's learned to read her labs to better know what's happening with her iron levels. We also talked to her about her chronic C Diff infections and using Fecal Microbiota Transplant to deal with it. It was quite the story and I think you'll laugh along with us when you hear it. Finally we talk to her about her other health conditions and how they've helped her become a fierce advocate for her health and to help her find community.

Links:

Crohn's & Colitis Young Adult Network
Generation Patient
Information on Fecal Microbiota Transplant- Mount Sinai Hospital
Video on how FMT works- Johns Hopkins Hospital

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This week we had quite the conversation with Beth Meals. Beth was diagnosed with UC but also with Endometriosis and POTS. We talked to her about struggling with all of these medical conditions when she was younger and growing up and about how her family dismissed and minimized her health conditions. We also talked about her trying to find the right healthcare providers who would explore these symptoms and help her get the right diagnoses and treatments. We talked to her about how this led to hear not trusting her body and how working with a dietitian has helped her to trust food and her body more. We talked to her about medical gaslighting and how she has coped with that. We also talked to her about the importance of community and support.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)Links:

Article: "Feeling Dismissed? How to Spot 'Medical Gaslighting' and What to Do About It"- New York Times
Pelvic Floor Dysfunction in IBD- recorded webinar on Own Your Crohn's and in partnership with the Crohn's & Colitis Foundation- USA
Stacey Collins, M.A., RD/LDN

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This week we brought back Dr. Bincy Abraham- Distinguished Professor and Director of the Underwood Center- Fondren IBD Program at Houston Methodist and Dr. Jami Kinnucan- Senior Associate Consultant in the Section on Gastroenterology and Hepatology at Mayo Clinic in Florida. We talked to them about their recent trip to the Digestive Disease Week conference. They mentioned the themes that noted in the conference in advances in diagnostic tools, new medications, and information on diets and IBD. We learned a lot from them and had major FOMO that we didn't get to attend DDW as well. We also may have to try to convince them that "The Bincy and Jami Show" has a nice ring to it and produce their own podcast! ;)

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

An interesting article about the Emerald Innovations device- Outsourcing Pharma
Emerald Innovations website
Information about Intestinal Ultrasound- Mount Sinai IBD Center
Article on Intestinal Ultrasound- Crohn's & Colitis Foundation- USA

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This week we spoke to Ken Carpenter! Ken is the producer and host of Athlete 1 podcast and was diagnosed with UC when he was 46 years old. Since he's been diagnosed he has had a pretty wild ride finding the right treatment and the right provider but has been so fortunate to have his wife be his partner in this process. We discussed all of the health conditions that he's faced and how his community rallied around him. We talked about his love of all things sports including coaching baseball for many years and how he managed that while also struggling with his UC. We talked to him about his life and how he eventually found his path (with help from his wife!) but about all the things in tried along the way including serving in the Army as a paratrooper!

We had a lot of fun getting to know Ken and we definitely had some good laughs!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Athlete 1 podcast
Information on Ankylosing Spondylitis- Cleveland Clinic
Information on J-Pouch Surgery- Crohn's & Colitis Foundation USA
Surgery in IBD and Pouchitis video- Crohn' s & Colitis Foundation USA

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This week we spoke to Amanda Dinkelman! Amanda is living with Crohn's disease but she doesn't let that stop her from being active and keeping fit. She credits getting out and moving her body with helping her cope with her disease and has even taken on a new challenge of powerlifting! We talk to her about training after a bowel resection and being very ill, how to trust your body, and how she keeps her body fueled. We also had a long conversation about the importance of finding a healthcare provider that's your true partner in your care and that you can trust. We also discussed how to become your own healthcare advocate and how therapy and meditation can help with learning acceptance, dealing with medical trauma, and with coping skills. We covered so many things and I think this conversation surprised all of us. We had fun and were playful and we also got deep and serious. I think you'll enjoy the ride as much as we did.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

An interesting story about an Olympic Powerlifter name Ali Zawad with Crohn's
A video explaining resection surgery- Crohn's & Colitis UK
Breathing Apps- Breathe2Relax and Awesome Breathing

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This week we had so much fun getting to know Natalie Hayden! You probably know her from her very popular blog- Lights, Camera, Crohn's: An Unobstructed View- and her Instagram account! Natalie is a journalist and worked as an on-air reporter for 3 different TV stations and was also the host of Wakeup Wisconsin all while coping with Crohn's disease. We talked to her about what it was like to work in such a public field while coping with her disease and figuring out the right treatment. We talked to her about when she decided to go public with her disease and to become a powerhouse patient advocate. We discussed how she uses her journalist skills to create informative and accurate stories for her blog and what it's like to engage on social media with our community. We also talked about motherhood and raising 3 small children while living with Crohn's and what it's like to navigate all the tasks associated with managing your disease like shots, appointments, ER visits and more with little ones. We also talked about tips that she has for other people who may be interested in getting active on social media as a patient advocate. We really enjoyed our time with Natalie and had so many more questions for her. If you don't follow her- do it now! You'll learn so much!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Information about the PIANO study- for pregnancy and IBD while using biologics
Resources for New Moms with IBD- Article by Natalie in Everyday Health
IBDMoms- A community by Moms with IBD, for Moms with IBD
Chronically Jess- resource for folks with IBD

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Warning- This episode discusses sexuality and contains sexual content and may not be suitable for all audiences.*
This week we had a really fun conversation with Dr. Neil Nandi! Dr. Nandi is an Associate Professor and Gastroenterologist with the University of Pennsylvania. We discussed his personal connection to IBD and how that shaped his career. We also talked about his role as the Director of Patient Outreach and Advocacy for the South Asian IBD Alliance and how the got involved with that organization. We spent a lot of time talking about how IBD can affect sexuality, how he talks to his IBD patients about this, and how to provide a safe space for people in the LGBTQI+ community to discuss their sexual health. Finally we discussed a fun fact about Dr. Nandi that we found when doing some research on him and now we want his autograph!

Links:

South Asian IBD Alliance
Information on sex and relationships and IBD- Crohn's & Colitis UK
"Sex, Intimacy, and IBD" Factsheet- Crohn's & Colitis Foundation- USA
"Sexual Health & Ulcerative Colitis: How to Talk to Your Doctor"- Everyday Health
The Needs of Gay and Lesbian People with IBD- Crohn's & Colitis UK
Dr. Nandi's fun fact! How to watch "Tie the Knot" or on YouTube

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This week we had the absolute pleasure to get to know Madhura Balasubramaniam! Madhura is a Ph.D. student in Chennai, India and she is also the Director of Patient Outreach and Advocacy for the South Asian IBD Alliance (SAIA)! She was diagnosed with Crohn's disease in 2019 after struggling with her health for many years. She and her doctor decided to utilize a feeding tube to help her manage her disease and so we talked about her choice to do this and how it was received by her family and community. We talked a lot about IBD in India- how it's viewed, the stigma attached to it, the treatment options, the health insurance system and so much more. We also talked about how she got involved with SAIA and her role on the POA committee and what it's been like to be involved with South Asian patients from around the world who are living with IBD. This was a truly fascinating conversation and Robin and I both loved Madhura. She is so incredibly passionate and committed to improving the lives of everyone with IBD and smart, funny, and a joy on top of it!

Please keep in mind that the views expressed on this show are those of the speakers and should not be considered medical or legal advice. Please consult with the appropriate expert if you have questions or concerns.

Links:

Nutritional Support and Therapy- Crohn's & Colitis Foundation USA
Another story by Madhura about using a PEG tube for her Crohn's - Patients Engage
Where to find info on IBDesis

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This week we talked to Robin's long-time friend, Abbe Feitelberg! Abbe is an attorney who is living with Crohn's disease. When she isn’t working, she is usually traveling, cycling, or finding time for fun no matter what that looks like. Abbe has lived with Crohn’s since the age of 17, getting through college and law school without a proper diagnosis and many difficult days. Following her diagnosis, Abbe went through multiple courses of ineffective treatment, several hospital stays, and some very scary days. But Abbe kept fighting and is proud to live each day to the fullest, truly believing that each one is crazy beautiful.

We talked to her about the Americans with Disabilities Act that provides protections for people living with chronic illnesses. We talk to her about getting through high school, college and law school without a diagnosis and therefore not having access to these protections. We talked to her about choosing a treatment that fits into her lifestyle and managing multiple chronic illnesses. I loved getting to know Abbe and hearing how she lives her lift to the fullest despite managing her illnesses. I can totally see why she and Robin have been friends for years.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical or legal advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Information on the Americans With Disabilities Act
United Nations- Convention on the Rights of Persons with Disabilities
US Dept. of Education- Protections for Students with Disabilities/504 plans
ADA National Network- What are public or private college-university's responsibilities to students with disabilities?
Weighing the new approaches to treating Crohn's and ulcerative colitis- Harvard Health Publishing
Megan Starshak's BM Episode!
Girls with Guts

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This week we had such a great conversation with Laura Manning, MPH, RDN, CDN! Laura is a registered dietitian that works with the IBD team at the Susan and Leonard Feinstein Inflammatory Bowel Disease Center at Mount Sinai Medical Center. We talked to her about her interesting and unique career before she became a dietitian and why she switched. We talked about nutrition therapy for people living with Crohn's disease and her research on scurvy and IBD. We discussed nutritional supplements and their safety and also how to introduce foods back into your diet. We also discussed the very effective and empowering GRITT-IBD program which is a multi-disciplinary program intended to provide services and support that will help patients have improved quality of life. Finally we talked about fish. We loved our conversation and laughs with Laura this week and we know you will too!

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)
Links:

Information about the GRITT-IBD Program- Mount Sinai IBD Center
An article on Scurvy and IBD that talks about Mt. Sinai's findings- General Surgery News
Laura and the Mt. Sinai team's Journal article- Vitamin C Deficiency in Inflammatory Bowel Disease: The Forgotten Micronutrient- Crohn's & Colitis 360
Dietary Supplements: What You Need to Know- US National Institutes of Health Office of Dietary Supplements

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This week we talked to Tommy Hazelton! Tommy was diagnosed with UC back in the late 1990's and went through a period where his disease was not well controlled. He was working as a musician and a performer and we talked about how he was able to be up on stage while symptomatic. We talked about the unusual and intriguing things he credits as helping him into remission and to maintaining symptom remission. We discussed his involvement in a support group and in volunteering as a counselor at Camp Oasis. We also talked about his friendship with another one of our guests -Stacey Calabro! Tommy was funny, introspective, unique, and we had a lot of fun and laughs in this episode.

Please keep in mind that the views and opinions expressed in this program are those of the speakers and should not be considered medical advice. Please consult with your healthcare team on any changes to your disease, diet, or treatment. We want you to stay safe and healthy! ;)

Links:

Stacey Calabro's episode!
An interesting article on using breast milk to treat adults
Blog- "My journey to writing music that inspires"- Crohn's Colitis UK
A delightful song about this guy's UC- "Ulcerative Colitis: A Song"

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This week we talked to Traci Beebe! Traci is the Director of Nursing and Clinical Practice at The Permanente Medical Group and she also happens to be Robin's sister! Traci was in nursing school when Robin was diagnosed with IBD and we talked to her about what that was like. We also talked to her about her experience with pain management clinics and pain and IBD. We discussed how and why pain management is so complicated and misunderstood in IBD and what we can do to change that. We also talked about the importance of case management and involving family in chronic illness care and management. Finally we talked about what it's been like for her to experience and help Robin during some of her most challenging times with IBD. Traci is so passionate and such and advocate and it was such a JOY to get to know her during this conversation.

Links:

How to Support Someone With IBD- Blog by the Crohn's & Colitis Foundation- USA
Resources for caregivers and professionals caring for IBD patients and their families- ImproveCareNow
Pain Management for IBD- Crohn's & Colitis Foundation- USA
Pain and IBD- Crohn's Colitis Canada

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This week we talk to Kajal Patel! Kajal is a 3rd year medical student originally diagnosed with UC but when she started to develop fistulas, her diagnosis was changed to Crohn's. We spoke to her about advocacy and a group she co-founded on campus for medical students with chronic illness. We talked about how she copies with everything that comes with IBD and school like setting up a 504 plan when you're an adolescent and registering with your college or university's office of disability services (even if you're in remission.) We discussed developing a sense of self/identity when diagnosed with IBD at a formative age and how she used to think she "was" her diagnosis and we talked to her about choosing GI for her career.

Links:

Read more about Kajal's story- Own Your Crohn's Blog
Talking to your professors about IBD- article written by Kajal for the Crohn's & Colitis Foundation
12 Things I Wish I'd Known Before Going to College With A Disability or Chronic Illness- Self
Navigating College- Crohn's & Colitis Foundation- USA

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This week we talked to Dr. Alessandro Fichera! Dr. Fichera is the Division Chief of Colorectal Surgery at Baylor University Medical Center in Dallas, Texas and the Surgery Safety and Quality Officer since July 2020. His clinical and research interest include colorectal cancer and inflammatory bowel disease. We talked to him about the different types of surgeries for IBD including robotically assisted surgery. We talked a lot about J-Pouch surgeries and optimizing outcomes for patients. We discussed how he addresses sexuality with his patients when it may be affected by a surgery. Finally we discussed his "5 R's" principle for preventing surgical recurrence and his love of the blues.

Links:

Surgery for IBD- Crohn's & Colitis Canada
Surgery for UC- Crohn's & Colitis Foundation- USA
Surgery for Crohn's Disease- Crohn's & Colitis Foundation- USA
Understanding J-Pouch Surgery- Crohn's & Colitis Foundation- USA

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This week Robin had a fan girl moment while we talked to Jackie Zimmerman! Jackie is one of the founders of Girls with Guts and was one of the OG IBD bloggers with her blog called "Blood, Poop, & Tears." Robin was a big fan of her blog and got a lot of information and support from it when she was originally diagnosed. We talked to her about creating community for women with IBD, living with both UC and Multiple Sclerosis, coordinating her care, building and running a business while living with IBD and MS, advocacy and advising with pharma companies, and so much more. This conversation had us feeling so many things- I hope you enjoy it as much as we did.

Links:

Jackie's Blog
Girls with Guts
What are the younger and elder Futharck Runes?
Tips on building a business while living with a chronic illness- Forbes

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This week we talked to Francesca Ferraro! Francesca was diagnosed with UC in 2019 and just had the first part of a J-Pouch surgery in January 2023. She has been absolutely loving life with her ostomy and talks a lot about the pros and cons of continuing with the next round of the J-Pouch process. She told us how her ostomy has improved her quality of life, decreased her anxiety, and has allowed her to go out and live the life she felt had been significantly compromised by her UC. We also talked about making such big decision as such a young age, the medication merry-go-round, and the emotional toll and trauma that can come with some IBD symptoms. We also talked about working with a therapist to help with the grief and trauma that can come with these diagnoses. Francesca is funny, resilient, interesting, ambitious, and so much more. I think you'll love meeting her as much as we did.

Links:

Understanding J-Pouch surgery video- Crohn's & Colitis Foundation- USA
How to Change Your Ostomy video- Ostomystory
United Ostomy Association of America website
Rome Foundation- Find a therapist trained in IBD- USA

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This week we had a great conversation with Dr. Jeremy Adler! Dr. Adler is the Director of the Pediatric IBD Program at CS Mott Children's Hospital at the University of Michigan. We talked to him about his research interests in quality of care improvements, health disparities and IBD, and the Covid vaccine and its effectiveness with children with IBD. We also talked to him about the medications used to treat children with IBD and his work leading the BISCUIT Study which looks at why biologic treatments are discontinued in the treatment of kids with IBD and the outcomes. We also talked to him about why he decide to go back to do even more medical school to become a pediatric IBD specialist after working as a pediatrician for many years. We really enjoyed sharing a cup of later afternoon coffee with Dr. Adler and hope to get to talk to him again soon!

Sincere apologies for the audio quality this week! My internet was not as great as it needed to be in the airport. Lesson learned! We appreciate your patience!!

Links:

Information about IBD in Children- North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)
IBD Resources for Parents and Kids with IBD- ImproveCareNow (ICN)
Youth and Parent Resources- Crohn's & Colitis Foundation- USA
Surgery Decision Making Tool- ImproveCareNow
Information about surgery for UC- Crohn's & Colitis Foundation- USA

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This week we had such a great conversation with Sam Reid! Sam works in digital engagement and communications for an independent, nonpartisan policy institute in Washington D.C. Her Crohn's disease has had a big impact on her career and many of the issues that she works to improve such as drug pricing and barrier to care. We had a very interesting and passionate conversation about healthcare access and affordability. We also talked about how she sought connection via social media and the blogs and articles that she's written to help other people coping with their disease. She's been published in Teen Vogue, Allure, Healthline and more. Sam had to learn how to navigate the healthcare system quickly and she's channeled that into such impactful and passionate outlets. We could have talked to Sam for so much longer and it was so hard to edit this episode down!

Links:

Op Ed written by Sam for Teen Vogue- Trying to Access Healthcare Can Feel Like a Second Job
Op Ed written by Sam for Teen Vogue-Chronic Illnesses are Devastating the Finances of Young American Like Me
Article by Sam for Allure- All of the Product I Use for My Crohn's Flare Ups

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This week friends of the show Stacey Collins, RD and Josie McGarva, GI Psychologist join us to recap the Crohn's & Colitis Congress. Congress is a conference for IBD HealthCare providers and researchers that's held by the American Gastroenterological Association and the Crohn's & Colitis Foundation. This conference focuses on the total care of people living with IBD from bench research to bedside and both Stacey and Josie presented about their research and work. We talked about what they spoke on, what they learned, what left them feeling hopeful both professionally and as patients with IBD, and their thoughts on how the conference can improve and evolve. It may sound like a stuffy conversation but we had a lot of fun and laughs in this conversation with our friends. Cheers!

Links:

Stacey Collins is an IBD focused dietitian- this is her private practice page
Josie McGarva teaches yoga! If you're in Denver, you can find her classes here
A journal article by Josie about PTS and IBD
OutCare Health- comprehensive resource for LGBTQ+ healthcare
Breathing Apps mentioned- Breathe2Relax and Awesome Breathing

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This week we talked to Maurie Jhaveri! Maurie was diagnosed with Crohn's when she was 11 years old but she was not stranger to Crohn's. Her dad was also diagnosed when he was 11 and so she was already a bit familiar with it but obviously had many questions as she started to navigate it herself. She found great support, education, and comfort in the Child Life Specialist at her children's hospital (shout out to Brenda Sonnier!) and that lead her to choosing to study Child Life so that she could become that same source of support for other kids affected by illness. We talked about her path to finding a good treatment, the complicated guilt than can come with living with a chronic illness, a new diagnosis she's having to navigate and co-manage with her Crohn's, and some of her unusual side effects. We also talked about how dance helped her to cope with her Crohn's and to help her connect with others when she was younger and how she'd like to create a dance program of her own to help other kids living with chronic illness. Maurie was such a joy to talk to and we know you'll love this conversation too.

Links:

Learn about Child Life
Youth and Parent Resources regarding IBD- Crohn's & Colitis Foundation
Camp Oasis- Camp for kids with IBD- Crohn's & Colitis Foundation

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This week we talked to Kelly Issokson, RD! Kelly is the Clinical Nutrition Coordinator at the F. Widjaja Foundation Inflammatory Bowel Diseases Institute at Cedars-Sinai in Los Angeles, California. Kelly provides nutrition therapy to children and adults in the IBD Institute, the Nutrition & Integrative IBD Subspecialty Clinic. She is the Course Director and Apprenticeship Director of the newly minted Cedars-Sinai Advanced Dietary IBD Education and Training (DIET) Program. Her research focus is on the nutritional optimization of surgical patients with IBD. We talked to her about this new provider training program and why it's so important. We discussed what patients can do to optimize their nutrition if they're preparing for surgery and what labs to ask for in general to get an idea of your nutrition status. We also talked about the nutrition care pathway that Kelly helped research and write for providers to track their patients nutrition status and to check for malnutrition and also her volunteer work doing advocacy on access to nutrition counseling services and medical food.

Links:

Nutrition resources for healthcare providers- Crohn's & Colitis Foundation
Get involved with IBD advocacy- Crohn's & Colitis Foundation
Link to find Stacey Collins, RD- IBD specialist in private practice- friend of the show and Kelly Issokson!

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This week we talked to Erron J. Maxey! Erron is a retired International Professional Basketball Player and now a banker. He had his first Crohn's flare when he was traveling in Columbia for his job and that started a pretty wild ride to get diagnosed and to find him best treatment options. We talked to him about what it was like to live in many different countries while coping with his disease and what it was like to train and eat to compete at an elite level with Crohn's.. We also discussed how it can seem like men are reticent about talking about their health issues and especially their mental health. We also talked about this volunteer activities with The Color of Crohn's and Chronic Illness (Aka COCCI). It was so fun to talk to Erron and we just scratched the surface! Enjoy!

Links:

Video featuring Erron that discusses fistulas- COCCI
An article with tips on International travel with IBD- Medical News Today
Traveling with IBD- Crohn's & Colitis Foundation
IBD Passport- Travel Advice for IBD
The Foul Bowel: 101 Ways to Survive and Thrive with Crohn's Disease by John Bradley- Erron recommended this book but we had to cut that part. :(

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This week we had the pleasure of talking to corporate executive, wife, mother, nonprofit board member, support group leader, author, and all around badass Christine Rich. And boy did we go all in on this conversation! We talked about mental health, body image, eating disorders, feeling safe or unsafe in your body, and so much more. We talked a lot about her book "Chronic" and how it was a very raw and important look at living with a chronic illness and hearing Christine's story.

Links:

Link to Christine's book "Chronic"
Find community and support- Crohn's & Colitis Foundation
Find a mental health provider trained in GI health- Rome Foundation
National Eating Disorder Helpline
Information on eating disorders and IBD- The Emily Program
A blog on disorder eating from our friend- Dietitian Stacey Collins! - Lights Camera Crohn's blog

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Chronic

We're ringing in the new year with a great episode! This week we talk to Dr. Bhaskar Gurram! Dr. Gurram is a pediatric gastroenterologist specializing in IBD at Children's Medical Center Dallas and UT Southwestern. We talked to him about the genetics of IBD and what we know about it from the current research. We discussed Fecal Microbiota Transplant (FMT) and it's role in treating C.Diff. We also discussed C.Diff in general and how to treat it as well as general health maintenance for people living with IBD (especially kids). Finally we talk about the language that's used in IBD care and how medical professionals can ensure that they're using patient-first language to help patients feel more successful and as truly part of the decision making process.

Dr. Gurram is a treasure and we so enjoyed our conversation with him! Enjoy!

Links:

What is FMT? - Mount Sinai GI Department
Health Maintenance Checklist for Kids with IBD- Crohn's & Colitis Foundation
Lots of resources for families with kids with IBD- GIKids

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We had the pleasure of getting to know Dani Edelstein in this episode! We talked to her about being diagnosed when she was only 8 years old and what it was like for her as the child of a doctor to have to navigate the medical system on her own when she got to be an adult. We discussed how the language used around IBD care can create difficulty for folks living with it- for instance when healthcare providers say that a patient has "failed" their medication. Dani talks about how that lead to patients feeling responsibility and even shame for their disease. We talked about the importance of mental health care, the differences between a loop and an end ileostomy, and so much more.

Links:

What is an ostomy? - United Ostomy Association
Really informative video about different types of stomas- Zero to Finals YouTube channel
Many toolkits for children living with IBD and their parents including transferring care to an adult GI- ImproveCareNow

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This week we caught up with our friend Lauren Erbach Barnfield! We've both known Lauren for several years but have never heard her full IBD story so it was really great to hear it all. We talked about her participation in the PIANO study which is a study about women living with IBD and taking biologics while pregnant and what all that entailed. We talked to her about finding the right treatment for her Crohn's and who choosing a biologic is intimidating especially when you can find so many negative stories on the internet. We also discussed talking to her small children about IBD, her going graduate school while living with Crohn's, having a full-time job AND a family, and about blogging about her Crohn's when she was younger. We also spent quite a bit of time talking about the importance of sharing your IBD story- even the mundane and seemingly normal parts- to help other people better understand what it's like to live with a chronic illness. And we talked a lot about the health insurance system in the US and how challenging it is to people with chronic illnesses.

Links:

A blog about the PIANO study- Natalie Hayden for the Crohn's & Colitis Foundation
A factsheet about Pregnancy and IBD- Crohn' s & Colitis Foundation
The book Lauren references is Trick Mirror: Reflections on Self-Delusion by Jia Tolentino
Tips for talking to your kids about your IBD- Crohn's Colitis UK
Alicia's drink recipe- Orange Lemon Gin Cooler

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This week we really enjoyed hearing Will Awve's story! We talked about his diagnosis with UC in college and how that affected his college experience. We discussed him trying basically all medication options to try to control his UC, his bouts with C. Diff, and then his eventual decision to go through J-Pouch surgery. We also had a chance to talk about how your mental health and how you mentally position your disease affects your attitude and resilience. And finally we talk about how UC can create some interesting, uncomfortable, and possibly even dangerous situations when out in the wilderness.

Links:

Take Action on access to medical nutrition- Crohn's & Colitis Foundation
A blog about hiking and camping with IBD- Girls with Guts
An interesting blog with tips about hiking with UC- **this blogger is not known to us- any advice and information is the author's. :)

Interested in being a guest? Email Robin at robin@bowelmomentspod.com or Alicia at alicia@bowelmomentspod.com or both! Cheers!

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This week we had such a great conversation with Joshua Samudre! Joshua is a medical student living with UC and so we talked to him about what it's like to study medicine while also a consumer of medicine. We talked to him about moving across the country and reestablishing yourself and your care. We talked to him about advocacy volunteer and volunteering at Camp Oasis and we had some good laughs about bidets, how mean kids can be, getting old and technology, and his unusual "fun fact" that he shared with us. Also- lots of shout outs to Grady Stewart! Be sure to check out his episode too!

Links:

Advocacy volunteer opportunities- Crohn's & Colitis Foundation
Camp Oasis- Crohn's & Colitis Foundation
Grady Stewart's Bowel Moments Episode

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Welcome to our second Research Roundup episode! We brought back Dr. Sunanda Kane- Professor of Medicine at Mayo Clinic and Dr. Lukasz Kwapisz- Assistant Professor of Medicine at Baylor College of Medicine to talk to us about the latest in what's happening in IBD research. We talked about new medications, biosimilars, diet research, and more.

Links:

Mayo Clinic on Crohn's Disease & Ulcerative Colitis: Strategies to Manage IBD and Take Charge of Your Life- Dr. Kane's new book!
Diet and Nutrition Research Updates- Crohn's & Colitis Foundation

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This week we had a great chat with Dr. Sabina Ali! Dr. Ali is a pediatric gastroenterologist and the medical director of the Inflammatory Bowel Disease Program at UCSF Benioff Children's Hospital Oakland. She also happens to be living with IBD herself. We talked to her about her special interest in quality of care research and involvement with ImproveCareNow. We also discussed caring for very young children with IBD, the importance of having a great care team, diets and IBD, and her involvement with the South Asian IBD Alliance.

Links:

Information for Parents, Kids, and Teens- Crohn's & Colitis Foundation
Support Groups for Parents, Kids, and Teens- Crohn's & Colitis Foundation
ImproveCareNow
Diet and Nutrition- ImproveCareNow

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This week we spoke to Matthew Kasabian! Matt told us about being diagnosed with IBD in college and how isolated it made him feel. He talked about how he saw all his friends out living their young, fun lives on social media and how frustrated he felt but also how he used these feelings of isolation and frustration to motivate him to seek out new treatments and new healthcare providers. We talked to him about the holistic diet he tried, we discussed his J-Pouch surgery and how living with an ostomy during that process helped him heal and gave him his life back, we talked about his healthy lifestyle of eating well and working out (with a few High Noons and other drinks incorporated), and about job hunting while going through the J-Pouch surgery process. Finally we talked to him about how he stays so positive and what an incredible impact an ostomy nurse named Andrew had on his life and his recovery.

Links:

Ostomy support and resource- United Ostomy Association
What is C.Diff and how is it treated? - Mayo Clinic
IBD and Body Image- Crohn's & Colitis Foundation - Campus Connection
Nutrition Tips for IBD- UCSF Health

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This week we tried something new! We let our friend Stacey Collins guest host the show! Stacey is a Registered Dietitian who specializes in IBD and our guest this week is Neha Shah who is also a Registered Dietitian who specializes in IBD. In addition to being a RD, Neha is also also a certified nutrition support clinician (CNSC), credentialed by the National Board of Nutrition Support Certification, a certified health education specialist (CHES), credentialed by the National Commission of Health Education Credentialing, and holds a Master’s in Public Health. She is in private practice but also is integrated into the IBD Center at UCSF. Beyond caring for her patients, she continues to provide lectures to healthcare providers, supervise nutrition interns, give community talks, author articles, and plan research studies with the medical teams. Neha is a powerhouse and a light.

They had such an interesting peer-to-peer conversation on diets and IBD, the cultural aspects of diet and how to navigate that with IBD, learning "cultural humility" and how to work with people from other cultures, and so much more. Robin and I really enjoyed eavesdropping on their conversation and I know you'll be just as fascinated.

Links:

South Asian IBD Alliance- Neha is on the board and super active with SAIA!
Nutrition and IBD info- UCSF health
Diet and Nutrition Info- Crohn's & Colitis Foundation
Diet and Nutrition Info- Crohn's Colitis Canada

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This is week we had such a fun conversation with Wendy Kovich! Wendy was diagnosed with Crohn's in her 20's very shortly after she married and it's been quite the roller coaster since. We talked to her about navigating through treatment options and surgeries, working with her healthcare team to get pregnant, dealing with a fistula, and what it's been like to raise her twins while having very active disease. We spent a lot of time talking about her decision to move from a J-Pouch to a permanent ostomy, what it took for her to emotionally make this decision, the team it took to do the surgery and to repair her fistula, how she learned from Instagram Influencers on how to care for her ostomy, and how much she loves her "Barbie Butt." We also laughed so hard about how her "white coat syndrome" manifests itself.

We loved talking with Wendy and we definitely feel like we have a new best friend.

Links:

Pregnancy and IBD Factsheet- Crohn's & Colitis Foundation
Pregnancy & IBD info- GI Society - Canadian Society of Intestinal Research
Fertility and IBD- Crohn's & Colitis Canada
Some great blogs about pregnancy and IBD- Lights, Camera, Crohn's - Natalie Hayden
United Ostomy Association
Wendy loves and referred to Gaylyn Henderson who runs Gutless and Glamorous!
GREAT Resources for moms with IBD- IBD Moms
Complications and Extraintestinal Manifestations info- Crohn's & Colitis Canada

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This week we talked to Dr. Tauseef Ali! Dr. Ali is the medical executive director of Saints Digestive Institute and director of IBD clinical and research program at SSM Health Saint Anthony Hospital. He is also a Clinical Assistant Professor of Medicine at the University of Oklahoma in the Digestive Disease and Nutrition section and adjunct faculty at Oklahoma State University. Additionally he's a board member and lead for professional outreach and education for the South Asian IBD Alliance. We talk to him about establishing an IBD Center of Excellence, we talk to him about all that he does for SAIA, we talked to him about the upcoming 2nd edition of his book "Crohn's and Colitis for Dummies", and we talk to him about "med twitter" and how active he is on there.

Dr. Ali was so much fun to talk to and so passionate. I think you'll enjoy this episode just as much as we did!

Links:

Learn more about Dr. Ali's 2nd edition of "Crohn's and Colitis for Dummies"
South Asian IBD Alliance

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This week we had a great conversation with our friend Jason Wild! We talked to him quite a bit about how he found a community of people living with IBD through Camp Oasis and how he's evolved from a counselor to a "Leader in Training" lead to a Camp Director. You can tell how much he loves camp and loves the community he's formed through it. We also talk to him about his use of medical cannabis to treat his UC and how he worked with his gastroenterologist to move to this option and to monitor his health. It was really interesting to hear a patient perspective on medical cannabis especially after our conversation about this with Dr. Jami A. Kinnucan a few weeks ago.

Links:

Our episode with Dr. Jami A. Kinnucan
Camp Oasis- a camp for kids with IBD and volunteers with IBD- Crohn's & Colitis Foundation
Information on medical cannabis- Crohn's & Colitis Foundation
Information on medical cannabis- GI Society- Canadian Society of Intestinal Research
Information on medical cannabis- Crohn's & Colitis Canada

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This week we shared a Rowdy Mermaid and had such an interesting conversation with Dr. Claire Hamnett! Dr. Hamnett is a pelvic floor physical therapist at Solstice Physiotherapy in New York City and she has a special interest in working with people living with IBD. We talk to her about how pelvic floor PT can help with scar tissue issues, pain management, and surgical recovery. We also talk to her about how it can help with bladder, bowel, and sexual dysfunction. We also talk about insurance coverage for PT and how to access it. We also find out the surprising reason why she became and avid runner. Learn with us friends! This was such an informative conversation and Dr. Hamnett is super knowledgeable and passionate about pelvic floor PT!!

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Links:

Articles for the public and how to find a pelvic floor PT- Academy of Pelvic Health Physical Therapy
Journal Article- Systemic Review: Pelvic floor muscle training for functional bowel symptoms in IBD
What is Pelvic Floor PT- Solstice Physiotherapy

This week we talked to Dr. Jeanne Tung! Dr. Tung is the Director of the Center for Pediatric IBD at OU Health. We talked to her helping kids transition and transfer to adult IBD care and we talk to her about her involvement in ImproveCareNow which is a collaborative made up of pediatric IBD patients, parents, and healthcare providers that works to (big surprise) improve care for kids living with IBD. We also talk to her about helping parents with kids with IBD to let go and allow their kids to start to take charge of their own healthcare.

Dr. Tung is such a passionate advocate for kids with IBD and we had so much fun talking to her.

Links:

Improve Care Now
Transitioning Tool Kit from GIkids.org
Surgery decision making tool kit from GIKids.org

This week we bring back Stacey Collins, RDN to celebrate(?) jpouch-iversaries. We talked about what Stacey and I have learned and what's been happening in our lives. We shared some tips and some of the not-so-pretty aspects of recovery to give you a better understanding of what to expect if you're discussing j-pouch surgery with your GI. Alicia decided to keep in some of the stuff she usually cuts, so please excuse the entire minute of just us laughing at the beginning. We do actually get down to business.

Cheers!

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Links:
J-pouch facts and infographic - UOAA
J-pouch surgery video - Crohn's & Colitis Foundation
J-Pouch Handbook - Penn State Health

This week we talk to Ben and Katie Portier. We talk to them about navigating Ben's IBD from dating to married life, from flares to hospital stays, to surgery, and life with an ostomy. We talk about anxiety, body image, managing relationships, and being social. We discuss finding support for yourself and offering support to others. We hope you enjoy - Cheers!

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Living with a permanent ostomy - UOAA
Emergency ostomy resources - UOAA
Anxiety and IBD - Crohn's & Colitis Foundation
Eating with an ostomy - UOAA
Spouse / caregiver resources - Well Spouse Association

This week we talked to self-described "IBD Dinosaur" Dewey Thom! Dewey has been living with IBD for more than 40 years and has lived quite a bit of that time with a J-Pouch. We talked to him a lot about the importance of finding a community of people who understand IBD. We talk about his accidental participation in a support group and his subsequent role as a volunteer facilitator for the group. He reminisced about his memorable time as a counselor for a camp with kids with IBD and what an amazing experience camp can be for the kids and also the adults. We also talked to him about obstructions, strictures, pouchitis, and how having IBD may have shaped his career decisions. Dewey is a gem and I know you'll enjoy our conversation.

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Links:
- Information about J-Pouch surgery and possible complications- Crohn's & Colitis Foundation
- Information about J-Pouch surgery and what you need to know- UCSF Health
- Video on Pelvic Pouch and Pouch Complications- Cleveland Clinic (professional education but still quite understandable)
- Support options including support groups- Crohn's & Colitis Foundation
- Information on Camp Oasis- camp for kids with IBD- Crohn's & Colitis Foundation

This week we talk to Courtney Robert, LCSW! Courtney is a licensed clinical social worker and therapist for the IBD Center at GI Alliance in Baton Rouge, LA! We talked to her about the IBD Center that they're building that provides a holistic approach to IBD care. We discuss trauma in IBD and the therapeutic technique called Eye Movement Desensitization and Reprocessing (EMDR). It's a really fascinating and really effective technique to help people with trauma and post traumatic stress. We also talked about gut-directed hypnotherapy and guided imagery. We learned a lot from Courtney and we know you will too!

Thanks to our sponsor- Romanwell!
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Links:
- Info from the EMDR Institute, Inc.
- An article about gut-directed hypnosis and IBD- U of Michigan featuring Dr. Megan Riehl
- Yoga, Breathing, and Meditation examples- GI Research Foundation- UChicago Medicine
- Mindfulness in IBD video- Crohn's and Colitis Canada
- Coping Strategies to Improve Mental Health- Crohn's & Colitis Foundation

We were so excited to talk to Tina Aswani Omprakash this week! Tina is a powerhouse in our community and we loved hearing her IBD story and all of the awesome things she's been working on- and despite the super-sized episode, we just scratched the surface! We talked to her about her very complicated Crohn's and her other autoimmune conditions. We talked about her family history of IBD and how her culture shaped her disease journey and eventually motivated her to speak out via her popular blog called "Own Your Crohn's." After she started speaking out more publicly, more and more people of South Asian descent and even further afield started reaching out and thanking her for helping to demystify and destigmatize IBD. That prompted her to start a social media group (IBDesis) and the success of that motivated her and her team to start the South Asian IBD Alliance. We were so excited to hear about SAIA's mission and their amazing progress in such a short time.

We also talked to her about how she manages her symptoms with a team of folks including a therapist, pelvic floor physical therapist, acupuncturist, and more. Her team helps her maintain her holistic wellness as well as her disease.

We know you'll be just as riveted as we were by Tina's story and all her accomplishments.

Thanks to our sponsor- Romanwell!
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Links:

An article on Pelvic Floor PT and IBD- American Physical Therapy Association
Pelvic Floor Dysfunction and IBD video- Own Your Crohn's Blog/Crohn's & Colitis Foundation
Information on Paralytic Ileus- Cleveland Clinic
Information on Ehlers-Danlos Syndrome type 3- Ehlers-Danlos Support UK
Journal Article on Culturally Competent Care for South Asian Patients with IBD- Journal of Crohn's & Colitis
Journal Article- "Hospitalization Experiences and Post-Traumatic Stress in IBD: Opportunities for Change"- Authored by friends of the show- Dr. Tiffany Taft, Josie McGarva, and Tina! - Inflammatory Bowel Diseases

We can hardly believe it but 1 year ago we published the first episode of Bowel Moments! Robin and I took this opportunity to reflect back on the last year, to talk about what we've learned, and to discuss how much we've loved working on this podcast.

We hope that you've enjoyed the last year and that you'll join us for all our upcoming episodes too. Please find us on Instagram, Facebook, or Twitter to follow along with the fun!

Thanks to our sponsor- Romanwell!
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This week we talk to Dr. Jami A. Kinnucan! Dr. Kinnucan is a Senior Associate Consultant at Mayo Clinic in Florida (or as she calls it- the Sandy Mayo) and she is an IBD specialist. She has a special interest in and researches cannabis and IBD and so we spend a lot of time hearing all about the limited research available and on the importance of talking to your doctor about cannabis use. It was really interesting to hear about the research that's been done but there's still so much to learn.

We also talked to her about her involvement with Scrubs & Heels which is a group for female GI providers that provides support, mentoring, and promotion of women in the field or looking to join the GI field. Their summit sounds so fun and we're totally holding Dr. Kinnucan to her promise to help us get an invite. Look for BM live at Scrubs & Heels in February 2023! ;)

Thanks to our sponsor- Romanwell!
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Links:
- Scrubs & Heels
- Information on Cannabis and IBD- Crohn's & Colitis Foundation
- Video on Medical Cannabis and IBD- Crohn's & Colitis Foundation
- Video featuring Dr. Kinnucan- "CBD Oil and Cannabis for ulcerative colitis & Crohn's"

This week we talked to Shawn Luna! Shawn was diagnosed with UC as an adult and it was a big surprise since he hadn't had any symptoms of it when he was younger. We talked about how quickly his UC came on, how scary it was to get diagnosed, and his struggles with pain and fatigue and to get into remission which lead to him being steroid dependent. As part of this process, his original gastroenterologist "fired" him and referred him to a IBD specialist and we talked to him about the difference in his care and how his new doctor got him into remission and helped him wean off of the steroids. Shawn was very open and honest about how he struggled with his mental health during the years when he wasn't in remission and how that affected his marriage, his parenting, and his sense of identity as a man and father. We were so impressed with Shawn's grit and positivity despite his difficult journey to remission and we love how he's used his experience to help other people struggling with IBD.

Thanks to our sponsor- Romanwell!
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Links:
- An interesting medical education module about steroids and IBD
- Crohn's & Colitis Foundation Hispanic Community Facebook Group
- A toolkit for talking to your children about your IBD- Crohn's & Colitis UK
- A toolkit for talking to your children about your IBD- IBD Clinic- University of Alberta
- Living with IBD: Pain & Fatigue- Crohn's & Colitis Foundation
- Managing Pain in IBD- Crohn's & Colitis Canada

This week we talk to Megan Starshak! Megan was diagnosed with UC in high school and, while it compromised her ability to do some of her favorite activities for a while, it didn't prevent her from finding new ways to enjoy her life and even led to her meeting some new people affected by IBD. Megan has devoted much of her life to helping other people with IBD share their story, feel connected, and to feel a sense of community. She is one of the founders of the nonprofit The Great Bowel Movement and it's mission is to "foster conversations surrounding the complexities and realities of IBD, fueled by an empowered, active community of patients and caregivers like you." They started by selling cool, awareness-building shirts but it has grown to so much more.

We talk to Megan about her motivation to start her nonprofit, running and cycling and the communities she's built through those activities, how animals can be really important sources of support and motivation, her role developing and facilitating the Leader In Training program at a camp for kids with IBD, her struggles with insurance even thought she's in remission, and so much more. We enjoyed our conversation and our margaritas so much during this episode. We know you will too!

Thank you to our sponsor! Romanwell!
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Links:

A blog about support and comfort from a pet- Crohn's & Colitis Foundation
Information on Exercise and IBD- Crohn's & Colitis Foundation of Canada
A great article on appealing insurance denials- IBD Advocate Extraordinaire- Amber Tresca! (Host of About IBD Podcast!)
Information on Non-Medical Switching (Insurance companies asking you to switch to a different/generic/biosimilar medication for no medical reason)- Infusion Access Foundation
Advice on running with IBD from other runners with IBD- Crohn's & Colitis UK
Ali On The Run podcast!- host lives with Crohn's and is a running enthusiast!

This week we talk to our friend Clayton Smith! Clayton is a self-described "autoimmune disease magnet" who lives with Crohn's, Celiac, Rheumatoid Arthritis, Lupus, a rare cardiac and soft tissue disease and who has also had 2 bouts with colon cancer. We talked to him about traveling to developing countries with IBD and how to prepare for that, we talk to him about rural vs. urban vs. tribal health systems, we talk about struggling with body image and mental health, we talk a lot about how running and getting involved in charity running events helped him connect with other people living with IBD (including Robin!), we hear some great stories about Robin, and we laughed a whole lot. We hope you enjoy our conversation with our talented friend as much as we enjoyed our 2 hours of recording.

Thank you to our sponsor- Romanwell!

Links:

An interesting journal article about traveling to developing countries with IBD
LOTS of information on traveling with IBD- Crohn's & Colitis Canada
Info on Colorectal Cancer and IBD- Crohn's & Colitis Foundation
IBD and Colon Cancer- Expert Q&A video - UChicago Medicine

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This week we shared an Earl Gray tea with Sari Grossman! Sari has a very unique case of Crohn's disease and she has a family history of Crohn's as well. We talk to her about growing up with Crohn's and also having a mother who is living with Crohn's. We discussed how she started navigating her own healthcare in her teens (with her Mom's coaching) and how and when she transitioned to an adult provider. We talked about her involvement with a club at her college for students living with IBD and how that provided her with both support and leadership opportunities. We talked about her choice of a career in immunology and her hope for future treatments and about medical trauma and how she figured out she was struggling with it and how she got help. This was such a great conversation and Sari is such a grounded and remarkable young woman. I think you'll learn a lot for this episode and enjoy meeting her very much.

This episode is sponsored by Romanwell!

Links:
Navigating College with IBD- Crohn's & Colitis Foundation
IBD on the College Campus- Lights Cameras Crohn's Blog
Preparing for Adult Care- Crohn's & Colitis Foundation
A Checklist on Preparing for Adult Care- GIKids.org
Toolkits for Pediatric IBD Patients- Transitioning to adult care, Navigating college, and more! - Improve Care Now

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This week week we interview Jasmine Bouche- AKA JPouch Jasmine! She's the first guest we've had on that neither Robin or Alicia knew already! It was so fun to get to know her and to hear her story of getting diagnosed in college, navigating the social scene and college experience while also navigating the healthcare system- and during a pandemic! We talked a lot about her decision to do the JPouch surgery, how she found connections and resources to help her cope, and about why she started her social media page focusing on her JPouch. Jasmine is in law school now and we know that she's definitely a woman to watch!

Thanks to our sponsor! Romanwell!

Links:
Navigating College with IBD- Crohn's & Colitis Foundation
Studying Abroad with IBD- Crohn's & Colitis Foundation
IBD on the College Campus- Lights Cameras Crohn's Blog
Video on JPouch Surgery- Crohn's & Colitis Foundation
Advice from a College Student About Navigating College with an Ostomy- The Mighty

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This week we talk to Stacey Calabro who has decided that makes her "Stacey C- The Deuce." Stacey has been living with IBD since she was in high school. She's been a social worker, probation officer, and finally her IBD prompted her to go to nursing school. She's done travel nursing and had some fun adventures because of it including some brushes with celebrities! We talked to her about what it's like to travel so often with IBD and live somewhere with less accessible healthcare, we discuss how IBD affects her joints and other illnesses, we talk about how she found her IBD family through support groups and volunteering with a camp for kids with IBD, and how she's basically famous. We laughed SO hard during this episode. I know you'll love Stacey C The Deuce as much as we did.

Thank you to our sponsor- Romanwell!

Links:
7 Tips for Traveling with IBD from Someone Who Gets It- Own Your Crohn's
Traveling with IBD- Crohn's & Colitis Foundation
Traveling with IBD- Canadian Society of Intestinal Research
Extraintestinal Complications of IBD- Crohn's & Colitis Foundation
Preparing for a colonoscopy- Crohn's & Colitis Foundation

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This week's episode was SO FUN! Robin and I got to record in the same room after not getting to meet up for more that 2.5 years! AND we had the joy of talking with Eitan Kling-Levine! Eitan is a young professional living with NYC and working in healthcare marketing. After growing up in the theater, he attended NYU for acting, and during senior year, got diagnosed with ulcerative colitis. This began a long road of intense sickness and treatment. After a year of complications and trying various therapies, he ultimately decided on having a three-part surgery. Following the year-long recovery, he was able to move back to NYC, and thankfully has been able to live life to the fullest ever since. Most recently, he got engaged, and is excited to marry his life partner in July 2023. We talked about living and dating in NYC (and how hard it may be to find a bathroom!), we talked about his surgery experience, the French healthcare system, his foray into legislative and personal advocacy, his career moves, talking about sexuality with your GI, and our mutual love of Sauvignon Blanc.

Thank you to our Sponsor! Romanwell!

Links:
Restroom finder app- Crohn's & Colitis Foundation
Get involved in IBD Advocacy- Crohn's & Colitis Foundation
Sex, Intimacy, and IBD Factsheet- Crohn's & Colitis Foundation

This week we talk to Dr. Tim Ritter- Senior Medical Director and lead for Clinical Trials at the GI Alliance. Dr. Ritter has been treating patients with IBD for more than 30 years and has a special interest in clinical trials. We talk to him about what's happening in the IBD research space, talking to patients about clinical trials, what patients can expect from participating in a trial, and bourbon.

Links:

Information on trials happening at GI Alliance
Information for patients on clinical trials- Crohn's & Colitis Foundation
Information on clinical trials for patients- Clinicaltrials.gov site
Clinical Trials: What Patients Need to Know- FDA
Video on participating in clinical trials- National Institutes on Aging

This week we talk to Nicole Williams- Licensed Professional Counselor! Nicole has more than 20 years of experience in providing therapy services and specializes in working with people living with chronic illness. We talk to her about the grief and loss wheel she developed to help her patients understand the emotions that can go along with being diagnosed and living with a chronic illness, we talk about self-advocacy and being the captain of your healthcare team, we talk about resources you can use if you're living with a chronic illness, and we talk about living well and fully with IBD.

Links that Nicole mentions:
- Heartmath
- MyGoodDays.org
- Healingwell.com
- WeAreCapeable.org

Folder with resources Nicole Covers.

Books Nicole Mentions:
- 7 Steps to Living with a Chronic Illness- By Matt Cavallo
- Life Disrupted: Getting Real About Chronic Illness in Your Twenties and Thirties- By Laurie Edwards
- Sick and Tired of Feeling Sick and Tired- By Paul Donoghue and Mary Seigel
- Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms- By Ilana Jaqueline
- How to Live Well with Chronic Pain and Illness: A Mindful Guide- By Toni Bernhard
- You Don't LOOK Sick! Living Well With Invisible Chronic Illness- By Joy H. Selak, PhD

https://opbmed.com/dr-tiffany-taft/
cool video about Dr. Taft and what it's like to be a GI psychologist- https://www.facebook.com/ccfafb/videos/dr-tiffany-taft-a-clinical-psychologist-splits-her-day-to-day-life-between-seein/408156540306837/

Working with a psychologist for IBD video- https://www.youtube.com/watch?v=cd1RsgRuZZQ

This week we had extra special guests- we welcomed Robin's daughters- Logan and Baylee! We discussed what is was like to grown up with a mom with IBD, how that may or may not have shaped their career choices, how Robin's parenting and their close relationship has shaped the way they live their lives, and we also share some fun childhood memories. This was a fun and heartwarming episode to record- we hope you enjoy!

This episode is sponsored by Romanwell!

Links:

An interesting blog on parenting with Crohn's disease- CBC
IBDMoms- a safe space to talk about parenting with IBD
Mamas Facing Forward- a group for moms living with chronic illnesses
A blog on parenting with Crohn's by Natalie Hayden- Lights Camera Crohn's

This week we talk to Brittany Rogers (formerly Roman-Green)! Brittany is an IBD-focused registered dietitian nutritionist, certified personal trainer, and behavior change specialist. She's the the co-leader of the diet and nutrition national scientific advisory committee for the Crohn's & Colitis Foundation, the national leader of the Registered Dietitians in IBD practice group for the Academy of Nutrition and Dietetics, and the founder of Romanwell. She also happens to live with ulcerative colitis! Brittany is a non-diet dietitian and believes in a health at every size (HAES) approach. She's passionate about her work and helping her patients live well. We sincerely enjoyed our conversation about intuitive eating, IBD and food myths, and where research on diets and IBD are taking us.

Links:

Brittany's company- Romanwell
Diet and Nutrition Information- Crohn's & Colitis Foundation

This week we talk to Dr. Smita Mehta, PT, DPT, PRPC! Dr. Mehta is a pelvic floor physical therapist and part of a multidisciplinary team for IBD at Brooke Army Medical Center in San Antonio, TX. She clarified what pelvic floor PT is, how it can help people living with IBD, how to find your pelvic floor, and so much more. This conversation was absolutely fascinating and a revelation for both of us. And Dr. Mehta is so passionate about her work! In addition to her impressive resume on pelvic floor rehabilitation, she also has certificates in Post Partum Corrective Exercise and Pelvic Oncology Rehabilitation and completed her Ashtanga Yoga Teacher's training.

This episode is sponsored by Romanwell! Exceptional care for people living with IBD from Registered Dietitians who focus only on IBD.

Links:

Image on what and where are your pelvic floor muscles - from Dr. Mehta
Article "Gut-Directed Pelvic Floor Behavioral Treatment for Fecal Incontinence and Constipation in Patients with IBD"
Article: "Pelvic Floor Dysfunction in IBD"
Article: "Systematic review: Pelvic floor muscle training for functional bowel symptoms in inflammatory bowel disease"
Article: "Nonrelaxing Pelvic Floor Dysfunction Is an Underestimated Complication of Ileal Pouch-Anal Anastomosis"
Video explaining pelvic floor muscles- Mayo Clinic
"Pelvic Floor Dysfunction in IBD" - recorded session- Partnership between Own Your Crohn's and the Crohn's & Colitis Foundation

Meet Kim K! Alicia had to miss this recording so you'll hear an intimate conversation between long time friends Robin and Kim. Kim was diagnosed with Crohn's disease when she was very, very young and before there were really any treatments for kids. They spend a lot of time talking about raising kids while having IBD and how that may have helped their kids become more empathetic and understanding. They also talk about how IBD has impacted their relationships and how they cope with symptoms like brain fog and fatigue. And Kim and Robin have some great advice to share on living life to the fullest.

Links:
- Moms with IBD
- Ostomy resources
- Relationships and IBD/Marriage and IBD
- Brain Fog
- Fatigue

This week we're joined by a couple of our past guests- Dr. Anish Patel and Dr. Ashish S. Patel- to discuss what's new in IBD research and what's coming down the pipeline! We had a great discussion about biosimilars, predicting colectomy risk in kids diagnosed with ulcerative colitis, using ultrasounds to help track disease progression, precision medicine, and new therapeutics. We learned a lot, gained a lot of hope for better patient quality of life, bemoaned the healthcare system, had a lot of laughs, and realized that Anish might be trying to take our jobs as the host of Bowel Moments.

Links to articles of interest:
Biosimilars- https://academic.oup.com/ibdjournal/article/28/4/495/6278840https://academic.oup.com/ibdjournal/article-abstract/28/4/531/6284046?redirectedFrom=fulltext

Clinical and Host Biological Factors Predict Colectomy Risk in Children Newly Diagnosed with Ulcerative ColitisPoint-of-care ultrasound in IBDNew Targets in IBD Therapy: 2021

In this episode you'll meet Dr. Sunanda V. Kane! Dr. Kane is a professor of medicine at the Mayo Clinic in Rochester, Minnesota; physician chair of the Mayo Clinic Quality Academy’s Fellow Subcommittee; and assistant chair of patient experience in the Gastroenterology and Hepatology Division of the Mayo Clinic. She has a special and passionate interest in women and IBD and so we spend a lot of time talking about fertility, hormones, pregnancy, and sexuality. We also talk about her upcoming book for patients on living well with IBD, being one of few female GIs, the PIANO study on pregnant women on IBD biologics, and a brief foray into why cilantro and ginger taste weird to some people.

Links:

Dr. Kane's Upcoming Book- Preorder now!
PIANO Study- Safety of IBD biologics during pregnancy
Information and resources on pregnancy and IBD- MothertoBaby.org
Pregnancy and IBD Factsheet- Crohn's & Colitis Foundation
Sex, Intimacy, and IBD Factsheet- Crohn's & Colitis Foundation
Video on Sexuality and IBD- Canadian Society on Intestinal Research
Fistula Removal- Crohn's & Colitis Foundation
(Lots more links for fistula information on Josie's episode!)

This week we share a tequila cocktail with Josie McGarva! We talk about her Crohn's disease and her struggle with fistulas and abscesses. We also spend quite a bit of time talking about mental health and IBD and Josie's graduate work in health psychology. She's making great strides researching Post Traumatic Stress and IBD and health disparities and IBD. Very cool stuff and we're really excited. We also talked about how opening up about her disease and how getting an ostomy empowered her, gave her more freedom, and helped her connect with others. You won't want to miss this episode! Follow Josie on Instagram! @it_takesguts

Links:
A journal article by Josie's Graduate Advisory on Post Traumatic Stress and IBD
Intestinal Complications information from the Crohn's & Colitis Foundation
Information on Fistula Removal Surgery- Crohn's & Colitis Foundation
Information on Abscess Draining- Crohn's & Colitis Foundation
Information on Fistulas and Abscesses- Crohn's & Colitis Foundation of Canada
An educational video on Fistulas- Cleveland Clinic
A video on how to change your ostomy bag- Phoenix Children's Hospital
So many great videos on living with an ostomy!- United Ostomy Association
Mental health & IBD- Cleveland Clinic

This week we talk to Hannah Cramer! We talked a lot about surgeries, waking up with an unexpected ostomy, how the world could be more accessible for people living with ostomies, her challenging career and how her IBD influenced her career choice, and trauma and IBD. You won't want to miss this great conversation. We're convinced she's going to change the world.

Links:
SO much Ostomy info from the United Ostomy Association
Info on ostomy parts and how to choose a supplier- United Ostomy Association
Donate ostomy supplies or get donated ostomy supplies- Friends of Ostomates Worldwide
Journal Article on how IBD can cause Post Traumatic Stress
Journal Article on Resilience and IBD

This week we talk to Caroline Perry on being diagnosed with Crohn's disease very young, growing up with IBD, and what is was like to have a sibling with IBD as well as one without IBD. We also talk about establishing boundaries when we you have IBD and also work in IBD research, how important it is to find people who really "get it", creative outlets for expressing feelings, and the importance of therapy (again- always). We share some laughs, some stories about bathroom emergencies, some sparkling water, and sadly Alicia drinks wine alone.

Links:

Where to find community and support from the Crohn's & Colitis Foundation
Youth and Parent resources from the Crohn's & Colitis Foundation
Mental and Emotional Well Being resources from the Crohn's & Colitis Foundation
Rome GI Psych- therapist search

In this episode you meet Dr. Lukasz Kwapisz! Dr. Kwapisz is an Assistant Professor and IBD Specialist at the Inflammatory Bowel Disease Center at Baylor College of Medicine in Houston, TX. We discuss how he chose to specialize in IBD and his passion for treating our community, his special interest in pouch disorders, tests that your doctor orders and why, the importance of early interventions, his clinical trials experience versus real life treatment, how close we're getting to personalized medicine, and tequila. And how he's a regular medical commentator on Canadian TV!

Links:

Information on Pouchitis from the Crohn's & Colitis Foundation
Journal Article- "Treatment of Pouchitis, Crohn's disease, cuffitis and other inflammatory disorders of the pouch: Consensus guidelines from the International Ileal Pouch Consortium"
Information on Pouchitis from the Cleveland Clinic
Information on tests your GI may use to manage your IBD from the Crohn's & Colitis Foundation
Clinical Trials Community from the Crohn's & Colitis Foundation

In this episode you meet Dr. Bincy P. Abraham! Dr. Abraham is a Distinguished Professor and Director of the Fondren Inflammatory Bowel Disease Program at the Underwood Digestive Diseases Center at Houston Methodist Hospital. We discuss her career in GI, her research into probiotics and nanotechnology, women's hormones and IBD, how she chooses her healthcare partners and patient treatments, how sometimes being a GI is like playing video games, and her love of California Cabernets.

Links:

Bincy's journal article about Nanotechnology
Information on pregnancy and IBD from the Canadian Society of Intestinal Research
A journal article on hormone fluctuations and IBD

This week we talk to Crohn's patient Jodie Delay who also has a brother and son with Crohn's. We discussed accepting and feeling all emotions, how empowering and exciting advocacy can be, and how you can choose to live joyfully even in the face of adversity (#ginandjoy). Jodie also gives us some parenting hacks and reminds us that just because you may have IBD, doesn't mean that you can't live out your "Impossibly Big Dreams."

Links:

Jodie is drinking Cold Smoke Scotch Ale- made by her cousin at Kettle House Brewery. Check it out!
A journal article about Crohn's Associated Lung Disease
Information on Extraintestinal Complications of IBD from the Crohn's & Colitis Foundation
One option to get involved in legislative advocacy

This week we talk to Amy Btiebet Washington on living well with Crohn's disease, self-care options, finding the right provider and the right tribe, how vulnerability can create connections, and how sometimes you just got to have that craft beer even if you pay for it the next day.

Resources:
- TED Talk- Brene Brown- The Power of Vulnerability- So good.
- Rome GI Psych- referral list of therapists familiar with GI disorders
- Information on mental health and IBD- Crohn's & Colitis Foundation
- An interesting article about self-care and chronic illness from The Philly Voice
- Info on the risk of a child inheriting IBD if you have IBD from The Preconception and Pregnancy research program from the University of Alberta and the University of Toronto.

In this episode you'll meet Lt. Colonel Dr. Anish Patel! Dr. Patel is the head of GI and an IBD Specialist at Brooke Army Medical Center in San Antonio, TX. We talk to him about why he chose IBD, how an IBD diagnosis works in the military, the importance of mental health, and small batch whiskey.

Links:
-Iron Smoke Distillery
-Brooke Army Medical Center Gastroenterology
-Information on IBD from the VA's website
-Information on how/if you can get your IBD Care at the VA
-Rome Foundation- search tool for a mental health provider familiar with GI disorders
-Mental Health Info and Resources- Crohn's & Colitis Foundation

As you hopefully heard in our last episodes, both Co-Host Robin and last week's guest Stacey Collins were having J-Pouch surgery. Their surgeries were quite close together and so they became surgery/recovery buddies. Unfortunately they had vastly different post-surgical outcomes. In this episode we talk about their different experiences, we talk about pre- and post-surgery nutrition, working with a dietitian to prepare for surgery, and provide you with lots of tips if you're also facing J-Pouch or ostomy surgery.

Resources:
Information from the Crohn's & Colitis Foundation on J-Pouch Surgery
Information from the Crohn's & Colitis Foundation on surgery
Information from the Cleveland Clinic on J-Pouch Surgery
Information from the Crohn's & Colitis Foundation on Colon Cancer risk and IBD

We had so much fun talking to our friend Stacey Collins in this episode! Stacey is a Dietitian who lives with UC and we talked about the field of Dietetics, diet research for IBD, what you can find out in your bloodwork, surgery as a treatment option, road-tripping with IBD....and the joy that is Topo Chico....especially when mixed with tequila and lime.

Cheers!

Resources and Show Notes:
1. CORRECTION: Vitamin C deficiency in IBD was from LAURA MANNING, RD from The Mount Sinai Hospital

Here's an article about perioperative nutrition. There are different recommendations for the time that a patient should be consuming EN prior to surgery based on nutritional status, and this should always be done under the direction of a perioperative GI dietitian or trusted surgical team with nutrition expertise.
**Micronutrients shouldn't be supplemented without the support of data (patterns of labs over time; never blind supplementation) and your trusted GI dietitian and medical team.

In this episode we talk to Dr. Ashish Patel who is the Chief of Gastroenterology and Hepatology at Phoenix Children's Hospital and an IBD expert! We discuss caring for kids with IBD, pediatric IBD research and why it's both exciting and frustrating, transitioning patients to adult care, and so much more! Be like Dr. Patel and grab an IPA and join us!

This week we had a great conversation with Grady Stewart! We talked about navigating the college health system, being diagnosed as a child vs. as an adult, grief associated with a chronic illness diagnosis, and how Grady works with and advocates for other people living with IBD. He's a joy and an inspiration!

This week we talk to Sam Goldon about navigating college and dating with IBD, mental health, pooping while camping, and so much more. Sam is one half of the envy-inducing "Wanderful Wives" instagram account, a pediatric nurse, and who is living very well with UC.

Get to know your co-host Robin and Alicia! In this episode Alicia interviews Robin and we learn about her Crohn's disease and history with IBD. We laugh....we cry....we drink!