Many young people who are undergoing ileostomy surgery to treat Crohn’s disease or ulcerative colitis have never met another younger person with an ostomy. Gaylyn Henderson, founder of Gutless and Glamorous, wants to make sure that people living with inflammatory bowel disease (IBD) don’t experience the uncertainty and stigma that she encountered before her ostomy surgery. In between running a successful foundation and a support group for people with chronic illness, Gaylyn has also become a spokeswoman for people with an ostomy, proving that her ileostomy is not a barrier to success.
People who live with Crohn’s disease and ulcerative colitis experience stigma because of their inflammatory bowel disease (IBD). The taboo topic of bowel disease can permeate all aspects of a person’s life, especially when there are cultural influences also at play. Tina Aswani Omprakash, who lives with Crohn’s disease and a permanent ileostomy, shares her story of personal empowerment and how she is working to help other people with IBD live their lives with confidence. Tina describes how IBD has profoundly affected her family as well as why she decided to become an outspoken advocate for the IBD and ostomy communities and start her blog, Own Your Crohn’s.
How does IBD affect your family? Do you know about the tools and resources that are available to help you on your disease journey? On this episode of About IBD, I talk with the Director of Patient Education and Support at the Crohn’s and Colitis Foundation, Catherine Soto, who outlines the many tools the Foundation provides for anyone with IBD, including those made just for parents, kids, and teens. I also spoke with Dr Rajeev Jain, who tells me about a new, one-of-a-kind resource for women with IBD who want to be mothers, called the IBD Parenthood Project. And finally I called upon Brooke Abbott, co-founder of IBD Moms, to talk about her role as a patient in developing the IBD Parenthood Project, and she entertains me with a small rant about social media.
It’s common for people with IBD to look online for patients who have a similar disease journey to their own. For men, however, there are fewer places to find such a peer because there are not as many men in the IBD influencer space as there are women. That’s where Rasheed Clarke, author of Three Tablets Twice Daily, blogger, and ulcerative colitis and j-pouch patient steps in. Hear Rasheed contrast how his running career is different before and after j-pouch surgery, his thoughts on being one of the few male voices in the online IBD community, how we can encourage more men to share their journey, and the wild and wonderful thing he did with a toilet for World IBD Day in 2017.
What compels a person to share their personal journey with IBD? For Rasheed Clarke, author of Three Tablets Twice Daily, his writing began as a way to keep track of everything for himself and his healthcare team. It quickly turned into a tool that he used to show those around him the stark realities of a life with IBD: bloody diarrhea and all. His coworkers and friends were shocked to learn how much he was coping with every day but not everyone close to him approved of his honesty. On this episode of About IBD, Rasheed digs into the positives, the negatives, and the responsibilities that come with being an influencer in the IBD space.
What is the microbiome, how might it be connected to IBD and other conditions, and how can it affect health when it’s pushed out of balance? Dr Sarina Pasricha of the Christiana Care Health System gives me the scoop on how the microbiome is created when we are young and how it changes with our activities and diet, as well as why we should not try fecal transplants at home, and how a little bit of dirt is good for our kids.
A diagnosis of IBD can take away the thing that you feel defines you as a person. This is how it felt for Megan Starshak of The Great Bowel Movement, who describes how her ulcerative colitis diagnosis at age 18 stole her passion for running. The process of losing and then regaining her identity as a runner fueled her desire to help people live well with a diagnosis of IBD. Her foundation seeks to educate those outside the IBD community through the use of a simple conversation prompt: Ask Me About My IBD.
The internet runs on advertising, which means that editors and writers are often tasked with getting the most possible eyeballs on their story. That can mean that there’s pressure to write a controversial or sensational headline to get those clicks. In this episode, I invite veteran medical writer and university instructor, Shereen Lehman, to weigh in and tell you how to figure out if a story about IBD is good reporting — or if it’s crap.
Why is it important to tell our stories? Every person who has IBD is unique and so is their disease journey. You might not think your experience is relevant to others living with IBD or another chronic condition, but it is, in many ways. A story can provide validation and hope while helping put the reality of life with IBD in perspective. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms and I continue our discussion of how we can support others with IBD through telling our stories and listening to yours.
What are your traditions around Thanksgiving? What we eat and how we celebrate Thanksgiving depends on where we live, our ethnicity, and our family traditions. What matters is coming together and remembering to be thankful. Brooke Abbott of The Crazy Creole Mommy Chronicles and IBD Moms tells me about some of her family’s Thanksgiving traditions and how she talks about being grateful with her son. We discuss some of the ways we try to support the IBD community and what we can do better, especially during the hectic and stressful holiday season. Plus, see the end of the show notes for some of Brooke’s recipes!