Adam Sikes was diagnosed with ulcerative colitis at 18 and later with stage 1 colon cancer. Along with his son Brandon, Adam shares how his family supported him through decades of illness, surgery, and recovery with a J-pouch. Adam and Brandon highlight how IBD affects families, the importance of screening, and the power of community support through groups such as Connecting to Cure.
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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.
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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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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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.
Content warning: sweary language and complaining. Also: I’m not looking for advice, thanks anyway.
I am so tired.
I should be doing other things right now. As a full-time freelancer, any time spent doing something other than paying work feels wasteful.
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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.
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For people living with inflammatory bowel disease (IBD), the path to pursuing our dreams can look different from that of our peers. Stand-up comedian Dave Piontkowski, lives with not only ulcerative colitis, but also chronic kidney disease. He developed a one-man show called “Three Kidneys, No Colon,” which describes his journey with both of these conditions. Dave talks about how and why his comedy actually improved while he was fighting for his life with kidney disease. He also tells us how his comedy is connecting the chronic illness community, but there are some audience members who find it can be too much.
Alicia and Robin, co-hosts of the “Bowel Moments” podcast, join Amber for a discussion about podcasting in the IBD community. Robin shares her IBD journey, including her diagnosis of ulcerative colitis, the complications that led to an ileal anal anastomosis, the later diagnosis of Crohn’s disease, and eventual J-pouch surgery. They also talk about the challenges of producing the podcast, the importance of therapy, and keeping up a social media presence. And: Robin makes a big announcement.
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Is it surprising to learn that some people living with IBD choose to have ostomy surgery? Hannah, a 24-year-old woman, shares her journey through the initial symptoms of IBD at the age of 15, to getting a diagnosis of ulcerative colitis. She describes how her symptoms worsened after diagnosis, including bleeding, bowel urgency, and fatigue, which led to multiple hospitalizations. Hannah advocated for surgery to treat her pancolitis, despite an initial difference of opinion with her medical team. After surgery, Hannah’s symptoms were significantly improved and she regained a sense of normalcy in her life. Hannah discusses the pros and cons of choosing an ostomy over a J-pouch, the importance of quality of life, and how surgery could impact her future fertility.
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