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  • Meet Angie V.!
    2025/05/21

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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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    52 分
  • Meet Nick M!
    2025/05/07

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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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    42 分
  • Global Perspectives on Pediatric IBD with Dr. Ashish S. Patel
    2025/04/23

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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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    49 分
  • Globe-Trotting with IBD: Josie's World Adventure
    2025/04/09

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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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    57 分
  • Pediatric Research Roundup with Dr. Jeremy Adler
    2025/03/26

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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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    54 分
  • Meet Stephanie L.!
    2025/03/12

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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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    58 分
  • Meet Dr. Charlie Lees!
    2025/02/26

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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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    59 分
  • Meet Tish, the Creator of Luminous Wounds!
    2025/02/12

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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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    49 分