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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Kinsey Beagley, a pediatric medical assistant diagnosed with ulcerative colitis at 15, shares about her experiences with IBD, including struggling with symptoms, multiple medication failures, and eventually having J-pouch surgery. Kinsey shares how reframing difficult experiences and adopting a positive mindset—her mantra is “I can do hard things”—has helped her cope.
Pregnancy can be a time of hope and excitement; it can also be fraught with fear, doubt, and complex decision-making. For women with chronic illness, it may be all of these things — and more.
Instead of offering support, evidence, and knowledge for pregnant women, the comments regarding acetaminophen (Tylenol) from the US Food and Drug Administration (FDA) and others are nothing short of confusing. This situation affects women with chronic illness disproportionately because it perpetuates the stigma around taking safe and necessary medications during pregnancy.
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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.
Samantha Sauer, BCPA, president of Gastroparesis Patient Association for Cures and Treatments (G-PACT) uncovers the challenges of living with gastroparesis and how it can overlap with IBD or other conditions. Sam shares her personal journey with gastroparesis and gives insights on symptoms, diagnosis, misconceptions, and the daily impact on patients’ lives. Topics include the difficulties in getting the right diagnosis, the emotional toll of dietary restriction, and the importance of support communities. Sam also highlights resources offered by G-PACT, including support groups and educational outreach, while encouraging self-advocacy and perseverance for those seeking answers or support for their digestive health.
Amber and Mariah discuss how women with chronic illnesses cope with advice on medication use in pregnancy—especially in light of the confusion around acetaminophen. Mariah shares her experiences with rheumatoid arthritis and pregnancy, focusing on changes in medication safety data. They talk about the pressure, stigma, and lack of support for pregnant women, the need for nuanced guidance, and provide resources.
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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Sean Lochran, who lives with IBD and an ileostomy, describes his IBD journey, including complications such as blood clots and adrenal insufficiency. Sean shares advice for staying active on difficult days, including the importance of personalization, hydration, and tracking health data. He debunks misconceptions about exercise with IBD or an ostomy and describes his client-centered approach to fitness coaching, grounded in empathy and lived experience.
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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.
Living with inflammatory bowel disease (IBD) is a journey. Every person has their own path, but there are some common themes, including physical pain, emotional challenge, and a sense of isolation or loneliness. We often need ways to cope with all of these things, which can include more formal techniques but also things that we can do by ourselves to find an outlet for difficult emotions and experiences.
I talked with Daniel Leighton—painter, augmented reality artist, filmmaker, technologist, and long-time Crohn’s disease patient—to explore why art is a powerful tool for processing trauma, expressing emotions, and finding hope in the setting of chronic illness.
Drawing on Daniel’s tips and experiences, this post breaks down the main themes and actionable tips for anyone interested in using art for healing and self-understanding, regardless of artistic skill.
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