About IBD

Amber interviews artist Daniel Leighton, who shares his journey living with Crohn's disease from childhood. Daniel tells us how he didn't think of himself as an artist, but painting became a vital tool for expressing emotions and coping with complex PTSD related to chronic illness. He offers some advice for those intimidated by starting a journey into creativity and describes how art validates the experiences of people with chronic illness. Daniel's artwork, inspired by his medical journey, helps others with IBD feel seen and less alone, highlighting the role of art in emotional healing and community connection. This episode contains a discussion of medical trauma and complex PTSD (post-traumatic stress disorder), so please take care when listening. Check the show notes for a description and time stamps, in case you want to skip certain sections. Episode transcript and more information at: https://bit.ly/AIBD185 Chapters: 00:01 Intro & Content Warning 2:40 Daniel’s IBD Journey & Surgeries 5:15 Early J-Pouch Surgery 6:24 Discovering Art as an Outlet 11:24 Art for Processing Trauma 15:21 Getting Started with Art 17:23 Art, PTSD & Chronic Illness 18:43 Connecting to Cure 19:57 Evolution of Artwork 21:30 Depicting Pain in Art 22:39 Trying New Things 23:44 Specific Artworks & Meanings 29:24 First Surgery & Trauma 33:12 Evolving Trauma Over Time 34:22 Art as a Bridge 38:08 Medical Restraint Trauma 40:52 Power of Not Feeling Alone 42:15 Lessons Learned the Hard Way 43:56 “Here Comes the Flood” 46:49 Self-Compassion & Healing Timelines 47:55 Ballroom Dancing & New Experiences 50:38 Where to Find Daniel’s Art 51:44 Closing & Credits Topics discussed on this episode: The role of art as an outlet for expressing emotions related to living with inflammatory bowel disease (IBD). Personal experiences of living with Crohn's disease, including diagnosis and surgeries. The therapeutic benefits of using art to process trauma and cope with chronic illness. Practical advice for using art as a form of emotional expression, regardless of artistic skill level. The importance of self-compassion and recognizing individual healing timelines. The impact of trauma on emotional expression and the need for safe spaces to feel emotions. The evolution of personal artwork and its connection to experiences with IBD. Encouragement to embrace intimidating activities as a means of personal growth and healing. The significance of creating visual representations of emotions, such as "pain charts." The importance of community and connection in the journey of living with chronic illness. Links to information mentioned in this episode: Miller-Ocuin JL, Dietz DW. The Evolution of Pelvic Pouch Surgery: Optimal Pouch Design for an Ileal Pouch Anal Anastomosis. Clin Colon Rectal Surg. 2022;35(6):453-457. doi:10.1055/s-0042-1758135. Morgan Check, NP: @morgancheckgastronp Taft TH, Bedell A, Craven MR, Guadagnoli L, Quinton S, Hanauer SB. Initial Assessment of Post-traumatic Stress in a US Cohort of Inflammatory Bowel Disease Patients. Inflamm Bowel Dis. 2019;25(9):1577-1585. doi:10.1093/ibd/izz032. Gomez DA, Ahmad-Waqar M, Brookes MJ, Kumar A. IBD-related mental health disorders: where do we go from here? Frontline Gastroenterol. 2023;14(6):512-520. doi:10.1136/flgastro-2023-102403. Find Daniel Leighton at: Facebook: @DanielLeightonArt Instagram: @DanielLeightonArt Substack: @danielleightonart Artwork: https://danielleighton.com/art-inspired-by-living-with-crohns-disease-ulcerative-colitis-a-deep-dive-into-personal-experiences/ YouTube: https://www.youtube.com/channel/UCdxRCTh6aPaaEgX07agRsFg Web: https://danielleighton.com/ Find Amber J Tresca at: AboutIBD.com: About IBD Verywell Health: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_ibd Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Episode transcript and more information at: https://bit.ly/AIBD184   Amber talks with Aaron Blocker, a Crohn’s disease patient and advocate, about the importance of finding and creating community for people touched by IBD. Online and in-person groups offer support and serve as platforms to share practical tips and counter misinformation. Aaron points out that it’s important to find a balance between advocacy, health, and personal life when offering support to others. Both emphasize the value of authenticity and learning from mistakes. The conversation stresses the importance of caring for mental health, the power of connection, and staying true to one’s own reasons for taking part in community.   Topics discussed on this episode: Importance of community for people living with inflammatory bowel disease (IBD) Challenges and rewards of sharing disease experiences online Navigating negative comments and misinformation in online communities Strategies for engaging with IBD communities and providing support Balancing community involvement with personal health and family life Mental health considerations when participating in online discussions Importance of authenticity and passion in advocacy work Addressing misinformation and promoting accurate health information within the community Chapters: 0:05 Intro & Sponsor 1:23 Aaron’s Background & Group Origin 5:30 Power of Community 8:08 Support in Community 11:44 Getting Involved in IBD Communities 15:16 Before Sharing Online 16:15 Motivation & Authenticity 19:10 Combating Misinformation 25:20 Boundaries & Balance 31:52 Mental Health & Selective Sharing 34:55 Handling Criticism & Mistakes 38:11 Referring Out & Collaboration 39:18 Responding to Criticism 40:13 Aaron’s Socials & Closing 41:53 Outro & Credits Find Aaron Blocker at: Facebook: @SupportIBD YouTube: @aaronblocker Instagram: @AaronBlocker_ Web: https://www.aaronblocker.com Find Amber J Tresca at: AboutIBD.com: About IBD Verywell Health: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_ibd Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer Instagram: @maccooneycomposer YouTube: @MacCooneyComposer Web: Cooney Studio Theme music, IBD Dance Party, is from ©Cooney Studio. These show notes contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

We get back to the basics of inflammatory bowel disease (IBD), including the differences between Crohn’s disease, ulcerative colitis, and how IBD is different than irritable bowel syndrome (IBS). IBDologist Dr Katie Dunleavy explains common symptoms, the diagnostic process, and treatment options, focusing on patient advocacy, regular screenings, and open communication with physicians and other healthcare providers. Also included is the importance of diet, stress management, second opinions, and multidisciplinary care in managing IBD. If you or your loved one lives with IBD, you will learn something new, and if there's someone in your life who could use help in understanding IBD, this is the episode to share with them.   Episode transcript and more information at: https://bit.ly/AIBD183   Topics discussed on this episode: Definition and overview of inflammatory bowel disease (IBD) Differences between IBD and irritable bowel syndrome (IBS) Types of IBD: Crohn's disease, ulcerative colitis, indeterminate colitis, and microscopic colitis Common symptoms associated with IBD Diagnostic processes and tests for IBD Treatment options and the importance of personalized care Role of diet and lifestyle changes in managing IBD Importance of mental health and stress management in IBD care Ongoing monitoring and screening for colorectal cancer in IBD patients Advocacy for patient-centered care and the need for multidisciplinary approaches in IBD management More information on the topics discussed: Understanding Toxic Megacolon: https://www.verywellhealth.com/toxic-megacolon-1943111 How Inflammatory Bowel Disease (IBD) Is Diagnosed: https://www.verywellhealth.com/ibd-diagnosis-1942637 IBD vs. IBS: Understanding the Differences: https://www.verywellhealth.com/ibd-vs-ibs-11714235 Inflammatory Bowel Disease (IBD) Medications & Treatment: https://www.verywellhealth.com/comparing-biologic-medications-for-ibd-4116127 Understanding Indeterminate Colitis: https://www.verywellhealth.com/what-is-indeterminate-colitis-4142657 Types of Colitis: Everything You Should Know: https://www.verywellhealth.com/types-of-colitis-5198817 Find Katie Dunleavy, MB, BCh, BAO at: Web: Massachusetts General Hospital Twitter/X: @dunleavy_katie Research Gate: Katie Dunleavy, MB, BCh, BAO Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Bluesky: @aboutibd.bsky.social Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio

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

A children's book leads to this conversation, which bridges the worlds of chronic illness, creativity, and connection. I talk with MB (Britt) Mooney, author of "The Mouse Who Couldn't Eat Cheese," a children's book inspired by a young woman named Alex who lived with severe Crohn's disease. MB, a science fiction and fantasy author, stepped outside his usual genre to create a story that helps kids and families understand invisible illnesses and the power of friendship. You'll hear behind-the-scenes insight on MB's creative process, the lessons learned from working with Alex's family, and the message he hopes every reader takes away—whether they live with inflammatory bowel disease or not.   Episode transcript and more information at: https://bit.ly/AIBD181   Topics in this episode include: 🦉 Representation of chronic illness, specifically Crohn's disease, in children's literature. 🦉 The importance of empathy and understanding in friendships, especially for children with chronic illnesses. 🦉 The challenges faced by children with Crohn's disease and the need for social inclusion. 🦉 The creative process involved in writing a children's book and the balance required in storytelling. 🦉 The role of creativity in problem-solving and fostering community. 🦉 The significance of raising awareness about chronic illnesses through literature. 🦉 The broader themes of connection, support, and validation for children facing health challenges.   Find MB Mooney at: Buy The Mouse Who Couldn't Eat Cheese Web: https://www.mbmooney.com/ Instagram: @authormbmooney Facebook: @MooneyMB LinkedIn: @britt-mooney-89820b52 Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Episode transcript and more information at: https://bit.ly/AIBD180   Grassroots organizations are an important part of the IBD landscape, helping fill in the many gaps in our underserved community. Amber talks with Angela Clark, president and CEO of Propel a Cure, a grassroots nonprofit that funds research projects looking for the causes of Crohn's disease. They discuss the challenges of finding cures for IBD and the importance of supporting innovative, early-stage research. Angela explains their grant selection process, highlights current research they fund, and shares how the organization communicates complex science to the IBD community.   Topics in this episode include: Origins and mission of Propel a Cure, a nonprofit organization focused on Crohn's disease research. Angela Clark's personal connection to Crohn's disease and her role in Propel a Cure. The grassroots nature of Propel a Cure and its all-volunteer structure. Challenges and rewards of running a nonprofit organization dedicated to IBD research. Funding strategies for innovative research projects related to Crohn's disease. Importance of raising awareness and combating misconceptions about Crohn's disease. Overview of current research projects funded by Propel a Cure and their scientific approaches. The role of a scientific advisory board in evaluating research proposals. Communication strategies for making complex scientific research accessible to the IBD community. Future goals for expanding funding capacity and building partnerships within the IBD space.   More information: Propel a Cure Videos (interviews with leading IBD researchers) Propel a Cure Newsletter Donate to Propel a Cure   Find Propel a Cure at: Web: PropelACure.org Twitter: @propelacure Instagram: @propelacure Facebook: @propelacure LinkedIn: @propel-a-cure-for-crohn-s-disease YouTube: @propelacure   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio

Amber speaks with Hindy Klein, a member of the Orthodox Jewish community living with Crohn’s colitis. Hindy shares how she manages IBD while observing Jewish laws, discussing challenges with diet, fasting, and hospital care during Shabbat and holidays. She also talks about overcoming stigma, the importance of community support, and how her faith helps her cope. The episode highlights the need for cultural sensitivity in healthcare and the value of sharing personal stories to support others with chronic illness.   Episode transcript and more information at: https://bit.ly/AIBD179   ✨ Intersection of inflammatory bowel disease (IBD) and religious faith ✨ Personal experiences of managing Crohn's colitis within the Orthodox Jewish community ✨ Challenges related to diet, fasting, and hospital care during religious observances ✨ Cultural tendencies towards privacy regarding chronic illness in the Jewish community ✨ Importance of community support and mutual aid in times of health crises ✨ Navigating healthcare communication with providers unfamiliar with religious customs ✨ The role of spirituality and trust in G-d as coping mechanisms for chronic illness ✨ Advocacy and openness about health experiences to combat stigma ✨ Balancing personal health needs with religious obligations ✨ The impact of social media in connecting with others and finding support within the IBD community   Topics discussed in this episode: Ulcerative Colitis vs. Crohn's Disease: What's the Difference? Crohn's Colitis: A Type of Crohn's Disease   Find Hindy (Tauber) Klein at: Instagram: @Hopeinhindy Tik Tok: @hopeinhindy   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Amber interviews Dr. Ali Navidi, a gastropsychologist specializing in mental health for people with gastrointestinal disorders. They discuss the importance of addressing mental health alongside conditions like IBD and IBS, highlighting the stigma surrounding these issues. Dr. Navidi explains cognitive behavioral therapy (CBT) and clinical hypnosis, emphasizing their effectiveness in managing symptoms. He also shares insights on the challenges of accessing mental health care and introduces a new therapeutic group program for IBD patients developed in collaboration with the Crohn's and Colitis Foundation, aimed at making treatment more accessible and affordable.   Episode transcript and more information at: https://bit.ly/AIBD178 Mental health challenges associated with inflammatory bowel disease (IBD) Stigma surrounding mental health in gastrointestinal disorders The connection between mental and physical health in digestive disorders Disorders of gut-brain interaction and their implications Importance of seeking support and building a network for mental health Role of cognitive behavioral therapy (CBT) in treating GI disorders Use of clinical hypnosis for managing pain and anxiety Access to specialized mental health care for patients with GI disorders Development of therapeutic groups for IBD patients Need for specialized training for mental health professionals in GI disorders Find Dr. Ali Navidi and GI Psychology at: Web: https://www.gipsychology.com/ Facebook: @GIPsychology Instagram: @gipsychusa More information on the topics we discussed: IBD Psychotherapy Group: https://www.gipsychology.com/ibdgroup/ PsyPact: https://psypact.gov/ Dr. Navidi’s discussion with Dr. Mark Mattar (Medstar Georgetown) and Kate Wheeling of The Atlantic about the impact of Clinical Hypnosis on IBS: https://www.gipsychology.com/2023/11/30/gi-psychology-and-the-atlantic-discuss-clinical-hypnosis-for-ibs/ Dr. Navidi’s interview with Elizabeth Chang of the Washington Post to talk Clinical Hypnosis and IBS: https://www.gipsychology.com/2022/10/04/gi-psychology-director-dr-ali-navidi-talks-to-the-washington-post/ Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio. These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Elizabeth Coldrick, a nutritional therapist and breathwork facilitator living with IBD and a permanent ostomy shares her experiences living in Bali, the challenges and benefits of managing IBD abroad, and the importance of nutrition and breathwork for mental and physical health. She explains how breathwork can reduce stress and inflammation, offers a simple breathing exercise, and discusses her new nutrition e-book for people with ostomies. The episode highlights self-care, community, and practical strategies for living well with IBD.   Episode highlights The connection between breathwork and mental health, particularly for individuals with inflammatory bowel disease (IBD). The significance of breathwork in managing stress and promoting overall well-being. Personal experiences of living with IBD and an ostomy, including challenges faced while living abroad. The impact of lifestyle changes, such as diet and exercise, on health while living in a different country. The physiological effects of breathwork, including its ability to lower cortisol levels and reduce inflammation. Different types of breathwork practices and their emotional and physical effects. The importance of finding qualified breathwork practitioners and creating a safe environment for participants. The role of nutrition in managing IBD and the development of resources tailored for individuals with ostomies. The benefits of community support for individuals living with chronic health conditions. A simple breathing exercise to encourage listeners to incorporate breathwork into their daily routines.   Find Elizabeth Coldrick and Wildly Brave Wellness at: Web: https://wildlybravewellness.com/  Instagram: @wildlybravewellness_ Free Happy Gut Guide: https://go.wildlybravewellness.com/happy-gut-guide Stoma Recipe eBook: https://wildlybravewellness.com/delicious-stoma-ibd-recipe-nutrition-ebook Sound Healing Videos: https://www.youtube.com/watch?v=62yWpuNrSgI    Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD177   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Jonathan Stewart, co-founder of Evergreen Adventures, a nonprofit focused on connecting the chronic illness community with outdoor activities, shares his journey with type one diabetes, ulcerative colitis, and sarcoidosis. Jonathan emphasizes the importance of staying active despite health challenges, describes the need for planning outdoor adventures, and encourages everyone to find joy in nature, no matter the circumstances.   Concepts discussed on this episode: Personal experiences with chronic illnesses, including ulcerative colitis and type one diabetes. The journey of misdiagnosis and the challenges of managing chronic conditions. The emotional impact of surgical decisions, such as colectomy and living with an ileostomy. The importance of community support and advocacy for individuals with chronic illnesses. The significance of restroom access and related laws for those with inflammatory bowel disease (IBD). The role of outdoor activities in promoting physical and mental well-being for people with chronic conditions. The founding and mission of Evergreen Adventures to facilitate outdoor experiences for the chronic illness community. The complexities of living with multiple overlapping health conditions. The importance of self-advocacy and collaboration with healthcare providers. Encouragement to redefine personal adventures and find joy in small moments despite health challenges.   Information on Restroom Access Laws: Digital I Can't Wait Card via Bladder and Bowel Support Company I Can't Wait Card with membership via the Crohn’s & Colitis Foundation This Can’t Wait card via Guts UK Charity What is The Restroom Access Act? via United Ostomy Associations of America Help Pass a Local Restroom Access Law in Your Community via the Crohn’s & Colitis Foundation State Legislature Websites   Find Jonathan Stewart and EverGreen Adventures at: Web: https://www.egadventures.org/ Instagram: @evergreen_adventures_mt   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD176   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

In this episode, Victoria, founder of GetYourBellyOut, shares her journey with ulcerative colitis and the importance of community support for those with inflammatory bowel disease (IBD). She discusses her diagnosis experience, the challenges of navigating healthcare, and the need for better patient advocacy. Victoria highlights the organization's growth, its initiatives like the IBD Nurse Helpline leaflets, and the significance of connecting patients with healthcare providers. She emphasizes the importance of funding to expand their services and create more opportunities for support, while also reflecting on the personal connections that drive her passion for this work.   Topics covered on this episode: Personal journey with ulcerative colitis and diagnosis experience Emotional and physical challenges of living with inflammatory bowel disease (IBD) Importance of community support and connection for individuals with chronic illnesses Founding and evolution of the organization "GetYourBellyOut" Advocacy and awareness efforts for IBD and its impact on patients Family dynamics and the effects of IBD on relationships Role of social media in connecting individuals with IBD Challenges of being a public figure in the IBD community Importance of patient feedback in improving care and resources Future goals and initiatives for expanding support and resources for those affected by IBD   Find GetYourBellyOut on: Web: https://getyourbellyout.org.uk/ Facebook: @getyourbellyout Twitter: @getyourbellyout Instagram: @getyourbellyout_official LinkedIn: @getyourbellyout-cic Tik Tok: @getyourbellyout_official Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD175   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Amber and gastroenterologist Dr Neil Parikh discuss technology’s impact on IBD management. Dr Parikh emphasizes the importance of patient diaries and open communication between patients and providers. They also address concerns about data privacy, integrating holistic approaches in patient care, and the potential of wearable technology in gastroenterology.   Find Neil D. Parikh, MD at: Web: Connecticut GI LinkedIn: Neil D. Parikh, MD   Find The Gut Doctor Podcast at: RSS feed Apple Podcasts Spotify All other podcast apps   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD174   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

People with Crohn's disease or ulcerative colitis (forms of inflammatory bowel disease, or IBD) were told for many decades that diet didn't affect the disease. Even today, some patients are still told this, even though there is now significant evidence that diet absolutely matters in IBD. Stacey Collins, MA, RDN/LDN describes how her journey with ulcerative colitis led to j-pouch surgery. Her philosophy as a registered dietician is one of “nutrition by addition" rather than by dietary restriction. Stacey also focuses on the emotional aspects of eating with IBD, including the understandable fear and anxiety around food.   Topics discussed: The role of diet in managing inflammatory bowel disease (IBD). Personal experiences with ulcerative colitis and dietary management. The misconception that diet does not impact IBD management. The philosophy of "nutrition by addition" versus dietary restrictions. The importance of individualized dietary approaches for IBD patients. The impact of food on gut health and bacterial diversity. Emotional aspects of eating with IBD, including fear and anxiety around food. The significance of finding joy in cooking and eating. Practical dietary recommendations for IBD patients, including the Mediterranean diet. The importance of community support and connection in managing IBD. Find Stacey Collins, MA, RDN/LDN at: Stacey Collins Nutrition: https://www.staceycollinsnutrition.com/ Twitter: @staceynellc_rd Instagram: @staceynellc_rd LinkedIn: @stacey-cutler-collins   Publications from Stacey Collins, MA, RDN/LDN: Scarlata K, Zickgraf HF, Satherley RM, et al. A Call to Action: Unraveling the Nuance of Adapted Eating Behaviors in Individuals with GI Conditions. Clin Gastroenterol Hepatol. Published online December 14, 2024. doi:10.1016/j.cgh.2024.11.010 Collins S, DIGID Inflammatory Bowel Diseases Workgroup. Iron in GI conditions. Patient.Gastro.org. 2024. https://patient.gastro.org/iron-in-gi-conditions/ Collins S, Castelan VC, Wernick R, et al. Effects of nutrition status and perioperative nutrition supplement completion on postoperative outcomes in patients with inflammatory bowel disease undergoing surgery. Gastroenterology. 2024;166(3):S22-S23. doi:10.1053/j.gastro.2023.11.081 Collins S. Surgery and Nutrition. Crohn’s & Colitis Foundation. 2024. https://www.crohnscolitisfoundation.org/patientsandcaregivers/diet-and-nutrition/surgery-and-nutrition. Nishioka H, Hasegawa Y. Addressing sarcopenia in people with disabilities: definition, assessment, and nutritional care. Medical Nutrition Matters. Reviewed by Collins S. October 1, 2024. https://www.eatrightstore.org/dpg-and-mig-products/dmnt/addressing-sarcopenia-in-people-with-disabilities-definition-assessment-and-nutritional-care.   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD 173   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

IBD patients are innovative, resilient, and powerful. My guest, Rachel Bee, is an incredible example of all these virtues. Rachel is a remarkable 17-year-old entrepreneur who was diagnosed with Crohn's disease at just 13 years old. She turned her experiences with IBD into a mission to help others by founding Infusion Hero, a company that designs innovative hoodies specifically for young patients receiving infusions.   Infusion Hero hoodies provide comfort and feature a unique design that allows for easy access during medical treatments. Rachel shares her story of navigating the challenges of her diagnosis, balancing high school, and running a business—all while maintaining her health and staying connected with friends. Don't miss Rachel's insights on how to turn personal challenges into opportunities for growth and innovation.   Discussion points include: Personal health journeys related to inflammatory bowel disease (IBD) Experiences of living with Crohn's disease as a teenager The impact of chronic illness on daily life and activities The importance of education and support for young patients with IBD The creation and purpose of Infusion Hero, a clothing line for infusion patients Balancing health, school, and entrepreneurial endeavors The role of mentorship and resources for young entrepreneurs Emotional aspects of managing chronic illness during adolescence The significance of community support and relationships with peers and teachers Future aspirations and educational goals for young patients and entrepreneurs Find Rachel Bee of Infusion Hero at: Web: https://www.infusionhero.com/ LinkedIn: Rachel Bee Facebook: Infusion Hero Instagram: @infusion_hero Tik Tok: @infusion.hero   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD172   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

It's not easy to manage both a career and chronic illness like inflammatory bowel disease (IBD, Crohn's disease, or ulcerative colitis). We need tools and tips in order to keep everything moving and succeed at work while caring for ourselves. I talk with Jen Hubley Luckwaldt about how freelancing can be a valid way of meeting both goals. Jen shares her journey from traditional employment to freelancing, including how it offers her flexibility in balancing work, health, and family. We talk about the importance of setting boundaries with clients, how to identify your marketable skills, and building a supportive community. Jen emphasizes the value of an abundance mindset in freelancing and offers practical tips for finding work and managing time effectively. If you've ever wondered how you can manage to work while still making it to infusions and appointments: we have a roadmap for you.   Episode highlights: Managing a career while living with inflammatory bowel disease (IBD) Challenges of maintaining traditional full-time employment with chronic illness Advantages of freelancing, including flexibility and work-life balance Importance of setting boundaries with clients Identifying marketable skills for freelancing The role of community and support in a freelance career Strategies for effective communication and feedback in professional settings Tools and resources for freelancers to enhance productivity The concept of an abundance mindset in freelancing   Find Jen Hubley Luckwaldt and The Job Hopper at: The Job Hopper: https://thejobhopper.substack.com Bluesky: @jenlucky.bsky.social Old Mom Things: https://oldmomthings.substack.com/ LinkedIn: @jen-hubley-luckwaldt   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD 171   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Do you find it difficult to find the time and energy to deal with mental or physical clutter? Lisa Zawrotny, a productivity coach and founder of Positively Productive Systems, helps us learn how to manage clutter, even when flaring. We discuss practical strategies for decluttering both your physical space and mental load, and how to celebrate even the smallest victories in your day-to-day life. Plus, Lisa reveals her insights on creating systems that work for you, no matter your circumstances. If you’ve ever felt weighed down by expectations or struggled to find balance, this episode is packed with valuable takeaways that can help you reclaim your time and energy.   Key points: Intersection of productivity and chronic illness Challenges faced by caregivers and individuals with chronic conditions Personal journey of caregiving and its impact on productivity coaching Importance of compassion and realistic approaches to productivity Strategies for managing stress and clutter Prioritization of tasks and setting boundaries Techniques for decluttering and energy management Celebrating small wins and acknowledging achievements The role of journaling in emotional healing and reflection Building community and support for individuals with chronic illnesses Episode sponsored by Connecting to Cure Crohn's and Colitis.   Find Lisa Zawrotny of Positively Productive Systems at: Web: www.positivelyproductive.com LinkedIn: @positivelyproductive Facebook: @positivelyproductive Twitter: @positively_lisa Instagram: @positively_lisa YouTube: @positively_lisa Tik Tok: @positivelylivingpodcast Pinterest: @positivelyproductive   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD170   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD169  

There's a need for more research addressing social determinants of health in the inflammatory bowel disease (IBD) community. Cass Condray, an IBD researcher who also lives with an IBD, points out the lack of information and resources focused on the unique experiences of LGBTQ patients. Cass also talks about the significance of representation in research, and the impact that intersecting identities have on people's health outcomes. Plus, we talk about Cass' web site, PrideAndPoop.com, what his hopes are for the future, and what there is to do in Oklahoma.   Find Cass Condray at: Web: Pride and Poop Bluesky: @cdalecondray.bsky.social LinkedIn: Cass Condray Google Scholar: Cass Dale Condray   Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD   Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio.   Episode transcript and more information at: https://bit.ly/AIBD168   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Amber hands over hosting duties to Jamie Holland, a patient advocate with Crohn's disease. They discuss their personal experiences with inflammatory bowel disease (IBD). They focus on Amber's decision to have j-pouch surgery after being diagnosed with dysplasia and the effects it had on her fertility. Jamie asks Amber to share about the emotional and physical challenges of motherhood with IBD, including fatigue and guilt. They also touch on the possibility of passing IBD on to children and the importance of community and support.   Concepts discussed on this episode: Xue M, Leibovitzh H, Jingcheng S, et al. Environmental Factors Associated With Risk of Crohn's Disease Development in the Crohn's and Colitis Canada - Genetic, Environmental, Microbial Project. Clin Gastroenterol Hepatol. 2024;22(9):1889-1897.e12. doi:10.1016/j.cgh.2024.03.049. Singh N, Bernstein CN. Environmental risk factors for inflammatory bowel disease. United European Gastroenterol J. 2022;10(10):1047-1053. doi:10.1002/ueg2.12319. Oh SJ, Kim HJ, Lee CK; Big Data Research Group (BDRG) of the Korean Society of Gastroenterology. A dose-dependent increase in the risk of inflammatory bowel disease after exposure to broad-spectrum antibiotics: A national population study in Korea. Aliment Pharmacol Ther. 2023;58(2):191-206. doi:10.1111/apt.17542 Growing Up With a Dog Might Lower Crohn’s Risk My IBD Life Parenthood Project Inflammatory Bowel Disease (IBD): Everything You Need to Know Find Jaime Holland at: Facebook: @prettyrottenguts Instagram: @prettyrottenguts Tik Tok: @prettyrottenguts Bluesky: @prettyrottenguts.bsky.social Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio. Episode transcript and more information at: https://bit.ly/AIBD167   These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.

Amber is joined by her husband, Mike, who recently underwent robotic hernia surgery. In this candid conversation, they explore the entire experience—from the initial discovery of the hernia to the surgery itself and the recovery process that followed. Mike shares his insights on the challenges he faced, including unexpected pain, dietary adjustments, and the importance of having a supportive caregiver. They also discuss the nuances of patient-provider communication and how to navigate the complexities of post-surgery life. Whether you’re considering surgery or simply curious about the process, this episode offers valuable lessons and firsthand experiences that might resonate with you.   Episode transcript and more information at: https://bit.ly/AIBD166   Find Michael Tresca at World of Welstar: Twitter: @WorldofWelstar Instagram: @world_of_welstar Facebook: @worldofwelstar MeWe: http://tinyurl.com/MeWeTRPG Threads: http://tinyurl.com/threadsWOW Bluesky: https://blskyl.ink/worldofwelstar Amazon: http://amzn.to/41jMn5h EN World: http://tinyurl.com/ENWRPG Drive Through RPG: http://tinyurl.com/DTRPGMNT Patreon: https://www.patreon.com/talien Find Amber J Tresca at: AboutIBD.com: About IBD Verywell: Verywell Health Facebook: @aboutIBD Twitter: @aboutIBD Pinterest: @aboutibd Instagram: @about_IBD YouTube: @AboutIBD Threads: @about_IBD Find Mac Cooney (mix, sound design, and theme music) at: Facebook: @maccooneycomposer  Instagram: @maccooneycomposer Web: Cooney Studio YouTube: @MacCooneyComposer Theme music, IBD Dance Party, is from ©Cooney Studio. These show notes may contain affiliate links. If you choose to purchase after clicking a link, Mal and Tal Enterprises, LLC may receive a commission at no extra cost to you.