After being diagnosed with ulcerative colitis, Victoria felt isolated and overwhelmed. She turned to social media to connect with the IBD community.
That led her to work with others in the IBD community to create #GetYourBellyOut. Their goal was to make some noise and get attention for Crohn’s disease and ulcerative colitis outside of the GI community.
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Victoria, from the patient-led, charitable organization GetYourBellyOut, shares her journey with ulcerative colitis. She describes the unique role of patient advocacy and the importance of community support, as well as the innovative projects that GetYourBellyOut is undertaking to bridge the gap between patients and healthcare providers.
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Dr. Neil D. Parikh, gastroenterologist, Chief Innovation Officer at Connecticut GI, and podcast host at “The Gut Doctor,” shares his expertise on the transformative role of technology in the management of inflammatory bowel disease (IBD). This article digs into the key themes discussed in About IBD Podcast Episode 174, including advice and deep insights for both patients and healthcare providers.
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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 dietitian 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.
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People with chronic illness are innovative. We have to be, because even though we have limited resources available to us, we’re often expected to achieve at the same level as people who are healthy.
In Episode 172 of About IBD, I talk to Rachel Bee. Rachel was diagnosed with Crohn’s disease at the age of 13. She successfully navigates the challenges of living with IBD while also becoming an entrepreneur. She founded Infusion Hero, a business dedicated to creating specialized hoodies for young patients undergoing infusions.
This blog post outlines some insights from Rachel, including valuable advice and inspiration for budding entrepreneurs.
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On About IBD Podcast Episode 170, I talk to Lisa Zawrotny, a productivity coach, founder of Positively Productive Systems, and host of the Positively Living Podcast. We talk about how people living with inflammatory bowel disease (IBD, Crohn’s disease, ulcerative colitis) or other chronic illnesses have unique challenges when it comes to productivity. Our discussion focuses on how to manage stress and clutter effectively when coping with low energy and flare-ups. Lisa shares her personal journey as a caregiver for her mother with Alzheimer’s and her experiences with chronic pain, which have profoundly influenced her approach to productivity coaching. In this post, I break down the key insights and actionable advice shared in the episode.
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In a recent episode of About IBD, I had the privilege of talking with Cass Condray, a passionate advocate and researcher. Cass, who not only works in IBD research but also lives with the condition, shared his insights into the unique challenges faced by the LGBTQIA+ community who live with IBD.
One of the issues highlighted in our conversation was lack of research. There’s little in the way of study looking at how IBD affects sexual and gender minorities, which influences healthcare outcomes and quality of life.
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For those of us living with chronic illnesses, parenting comes with challenges that are different than those of our peers. On About IBD Podcast Episode 167, Jaime Holland and I share how we manage guilt and fatigue from inflammatory bowel disease (IBD). Here are some key takeaways and practical tips from our conversation for parents with IBD who find themselves making their way through similar challenges.
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Dr. Iris Wang, assistant professor in the division of Gastroenterology and Hepatology and the Associate Program Director of the GI fellowship at Mayo Clinic in Rochester, Minnesota and Amber Tresca discuss the stigma surrounding gut health and poop. Dr. Wang shares the experience of writing a children’s book focused on preventing and managing constipation titled “Boo Can’t Poo!” They also discuss the challenges of publishing a book on gut health and the potential benefits of talking about poop and toileting, emphasizing the importance of open communication and personalized treatment. Listen to learn about where you can get “Boo Can’t Poo!” and how parents with IBD can manage their anxiety around the idea of their kids developing IBD.
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What is being done to help prevent inflammatory bowel disease (IBD) in the next generation? The Genetic, Environmental, Microbial (GEM) Project is a research study from Crohn’s and Colitis Canada (CCC) focused on finding possible causes for Crohn’s disease by following healthy people who are at a higher risk for developing the disease. To talk about GEM, Amber interviews CCC volunteer Chantel Wicks. Chantel is the chapter president for the Durham Region in Ontario and the Chair of their Gutsy Walk, which is a fundraiser and event that takes place every year in the first weekend of June. Learn more about how the GEM Project is uncovering important information on the development of IBD and how to get involved in CCC and The Gutsy Walk.
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