I’m a little tired of being “resilient,” aren’t you?
I’m told I’ve developed resiliency, and that’s how I’ve made it through the difficulties with my illnesses (ulcerative colitis and others) and their treatments, such as surgeries. I don’t really think of it that way, however. My perspective on resilience is that I don’t see how I could exist without it.
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Katryna Loewen, a registered nurse diagnosed with ulcerative colitis in 2020, shares her journey through severe flare-ups, incontinence, and her decision to have a colectomy and ileostomy in 2024. She discusses the emotional and physical challenges of living with IBD, the stigma of ostomies, and how these experiences shaped her life, relationships, and career. Katryna also describes managing her mental health, planning her wedding, and preparing for motherhood, offering hope and practical advice to others with IBD.
Living with inflammatory bowel disease (IBD)—including Crohn’s disease and ulcerative colitis—is an isolating and overwhelming experience. Patient advocacy is a powerful way to channel these challenges into meaningful change for the entire IBD community. In episode 186 of About IBD, Kelly Dwyer and I shared our journeys, practical advice, and insights on how anyone can become an effective advocate, regardless of experience or background.
Here you’ll find a roadmap for patients, caregivers, and allies who want to make a difference in public policy.
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Every person living with inflammatory bowel disease (IBD) can help change public policy by sharing their story and participating in advocacy events, such as visiting legislators in Washington, D.C. Amber talks to Kelly E. Dwyer, who teaches us how to prepare an elevator speech and gives us practical tips for Hill Day logistics, working within teams, staying emotionally resilient, and following up with staffers. Advocacy is for everyone, and persistence and collaboration can lead to real policy changes to benefit the IBD and chronic illness communities. By the end of the episode, you’ll have the real resources you can use to do this work as a patient advocate both locally and nationally.
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.
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Living with a chronic illness like inflammatory bowel disease (IBD) is isolating. Not only are there stigmatizing physical symptoms, but there’s an emotional toll. It’s challenging for patients to find understanding and support in their everyday lives.
In episode 184 of About IBD, I sat down with Crohn’s patient and advocate Aaron Blocker to talk about the role of online community. Aaron shares his journey in building an online support group for people with IBD, including the successes and the frustrations.
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Living with inflammatory bowel disease (IBD) is a complex journey that extends beyond physical symptoms. IBD affects us as whole people, not just digestive systems.
On The Mind-Body Connection in IBS and IBD Featuring Ali Navidi, PsyD – About IBD Podcast Episode 178, Dr. Ali Navidi, a gastropsychologist and co-founder of GI Psychology, discusses the often-overlooked mental health challenges that come with an IBD diagnosis. Patients, caregivers, and healthcare professionals will all come away with a deeper understanding of the gut-brain connection and practical strategies for holistic care.
This blog post covers some of the themes and expert advice from the episode, offering in-depth guidance and actionable tips for managing the mental health aspects of IBD.
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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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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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