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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

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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.

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
• 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!

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: 

• Grupo de Apoyo para Adultos con EII
• 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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