Tag Archives: ulcerative colitis

Why Representation Matters for the LGBTQ+ Community – About IBD Podcast Episode 168

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.

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Thriving as a Parent with Chronic Illness: Tips for Managing Guilt and Fatigue

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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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How to Thrive as a Parent with IBD – About IBD Podcast Episode 167

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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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Chronic Illness and the Language of War

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I don’t get to say how other people decide to refer to themselves. How someone defines their relationship to their disease or to themselves is none of my business. I don’t get to make decisions about language on behalf of anyone.

I do, however, get to decide how I refer to myself and to living with inflammatory bowel disease (IBD). I do get to be intentional about the words I use in my writing to describe these illnesses and how I see them in the context of the broader world. I do make decisions about the phrasing I choose to use in my work to create educational material for people living with digestive disease.

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“3 Kidneys, No Colon” With Dave Piontkowski – About IBD Podcast Episode 163

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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.

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The Hosts of Bowel Moments – About IBD Podcast Episode 162

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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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Parenting With IBD – About IBD Podcast Episode 160 With Alison McGauley

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Amber interviews Alison McGauley, a teacher and author of “Kenzie’s Little Tree,” a children’s book about a girl whose mother lives with chronic illness. Alison shares her journey with ulcerative colitis, irritable bowel syndrome (IBS), and ankylosing spondylitis, and how her hospitalization impacted her two daughters. She emphasizes the importance of talking about illness with children to help them process their emotions. Alison’s book, set to release in March 2025, aims to provide a narrative for families dealing with chronic illness. Pre-orders are available, with proceeds donated to Crohn’s and Colitis Canada and the Arthritis Society.

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Choosing Ostomy Surgery – About IBD Podcast Episode 159

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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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It’s a Pouchoscopy, Not a Colonoscopy

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I had j-pouch surgery to treat dysplasia and ulcerative colitis when I was 26 years old. That means my colon and most of my rectum were removed. A part of the last section of my small intestine (the ileum) was used to create a “pouch,” which functions like a rectum to hold stool. The part of small intestine is folded back on itself and attached to the rectum in the shape of a “J.”

This surgery makes my life easier. This surgery makes getting healthcare harder

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Understanding Flare-Ups in Inflammatory Bowel Disease

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Finding the causes of the inflammatory bowel diseases (IBD, Crohn’s disease, ulcerative colitis, and indeterminate colitis) has been difficult for researchers to untangle. It’s thought that IBD may be a result of a genetic predisposition and an environmental trigger, with microbiome and immune system changes as a chaser. (Rudbaek)

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