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What if the decision you feared most was the one that finally set you free? We sit with Gaylyn Henderson—writer, model, and founder of Gutless and Glamorous—to trace her path from a swift, severe Crohn’s diagnosis at fourteen to an ostomy that gave her health, energy, and a voice loud enough to change minds.

Gaylynn opens up about the early years when prednisone and 6MP were the only options and hospital stays collided with high school milestones. She explains how stigma around surgery—echoed by culture and sometimes even clinicians—kept her in pain despite worsening Crohn's with fistulas. The turning point came with a loop ileostomy and near-instant relief: weight returned, pain lifted, and daily life felt possible again. That contrast fuels her mission to push back on misinformation, normalize ostomies, and help others avoid years of needless suffering.

We explore how a personal blog became a movement. Gaylyn shares the moment she hit “send,” the flood of messages from people who finally felt seen, and how modeling with Aerie made ostomy visibility mainstream. Her nonprofit, Gutless and Glamorous, builds community through modern, welcoming spaces that don’t feel like traditional support groups, connecting patients who can check in when symptoms surge and silence sets in.

Mental health takes center stage as Gaylyn unpacks the myth of “I should be able to handle this,” and we discuss why therapy and tools like EMDR can help after the crisis has passed. Chronic illness can be isolating; community is part of care. Expect candid talk about advocacy, ostomy life, body image, and the courage to redefine normal on your own terms.

If this conversation resonates, tap follow, share it with someone who needs it, and leave a review—your voice helps more people find the support they deserve.

Links: 

• Gutless and Glamorous website
• Gaylyn on Instagram
• More of Gaylyn's story in Elle magazine
• Gaylyn in The Mighty

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What does great IBD care look like when the system won’t make it easy? We sit down with Dr. Adam Ehrlich, Section Chief of Gastroenterology at Temple Health and GI fellowship program director, to explore how he builds patient-centered care in an underserved setting—where insurance denials, missing records, and real-life logistics collide with complex disease.

We talk about health literacy, trust, and the conversations that actually change outcomes. Adam explains how he frames risks and benefits with clarity, why the “risks of doing nothing” deserve equal airtime, and how he balances mode of therapy—IV, subcutaneous, or oral—against lifestyle, trauma history, pregnancy plans, and coverage rules. We dig into prison medicine’s constraints, from medication access to policy barriers around scheduling, and the creative problem-solving required to keep patients safe and informed. He shares why being honest about uncertainty builds credibility, and how an early investment in patient education pays off with better monitoring and shared targets for remission.

The episode also gets practical about personalization. We discuss drug levels with infliximab when severe colitis “loses” medication into the stool, when it’s wise to de-escalate dosing, and how habits from flare days can persist after inflammation settles. Adam offers tools to retrain routines, navigate IBS overlap, and align care with quality of life goals like driving, work travel, and showing up at a kid’s soccer game without anxiety. As a fellowship director, he reveals how he equips new gastroenterologists to handle today’s broader therapy menu, think beyond flowcharts, and advocate through insurance barriers with persistence and purpose.

If this conversation resonates, tap follow, share it with someone who needs it, and leave a quick review. Your support helps more people find practical, human-centered IBD care.

Links and organizations to follow! 

• Color of Gastrointestinal Illness (COGI)- mission to improve quality of life for BIPOC who are affected by IBD and other GI issues. 
• The Stephanie A. Wynn Foundation - mission to eliminate health disparities and improve outcomes for individuals and communities affected by Inflammatory Bowel Diseases through comprehensive support services, with priority given to underserved populations facing the greatest barriers to healthcare.
• Strategic Alliance for Intercultural Advocacy in GI (SAIA)- mission to create culturally sensitive resources, research, and education for patients, caregivers and healthcare providers managing chronic GI conditions in order to minimize delays, dispel stigma, promote early diagnosis, and improve access to treatment for all.

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The hardest part isn’t always the pain; it’s the fog—those days when the labels keep changing, the meds blur together, and the bills are louder than your body. That’s where Stephanie A. Wynn stepped in, transforming her Crohn’s journey into a movement for clarity, access, and equity.

We sit down with Stephanie—author, podcaster, and founder of the Stephanie A. Wynn Foundation—to unpack how a misdiagnosis spiral, two heartbreaking pregnancy losses, and a sixth GI finally led to answers and action. She walks us through the IBD Patient Navigator Program she built to connect people with the care team they actually need: GI, primary care, mental health, dietitian, pelvic floor therapist, and, when needed, a colorectal surgeon. We talk about practical tools that change outcomes—recording appointments, coming with three priority questions, tracking symptoms and meals, and learning your labs so they can become signals instead of mysteries.

Stephanie also opens up her book Navigating IBD: A Six-Week Blueprint for Better Gut Health which she designed to slow overwhelm and teach the language of care including treatment decisions, and what “knowing your numbers” truly means. We dig into clinical trials—why she calls it clinical research, how to qualify, what to ask about aftercare, and ways to participate through labs or tissue samples to boost representation. We tackle health disparities and social determinants of health head-on: transportation, refrigeration for meds, school support, and why trust is built by showing up with real solutions.

This is a conversation about agency and community for anyone living with Crohn’s disease or ulcerative colitis. You’ll leave with a sharper checklist, a stronger voice, and a reminder that you are not alone—and that the right tools and team can change everything.

If this helped you, follow the show, leave a quick review, and share it with someone who needs a clear path forward today.

Links: 

• Link to Stephanie's IBD book
• The Stephanie A. Wynn Foundation
• Racial and Ethnic Disparities in Medical Advancements and Technologies- Kaiser Family Foundation 

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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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