What has been your experience with ostomy surgery? If you know someone who lives with an ileostomy or a colostomy, you’ll likely get your impression about having a stoma from them. But what if that person struggles to accept their stoma? When Amber Wallace Ogle of The Ostomy Diaries was faced with ileostomy surgery to treat her Crohn’s disease, she was reminded of the negative experiences of her family members who lived with an ostomy. However, it didn’t take long after her surgery before she was embracing life again and working to show others that life with an ostomy can be fulfilling and beautiful. Amber tells her Crohn’s disease story, gives 5 tips for advocating online, and shares a message she received from a family that has been touched by her advocacy.Continue reading
Ostomy surgery can improve quality of life for people with IBD but it is still not discussed often enough, or early enough, in the disease process. This leaves patients to cope with the surgery and the acceptance of an ostomy during a time when they are already critically ill. For Austin Powers, who goes by The Ostomy Guy, he exhausted all his possibilities to treat complications from Crohn’s disease before having surgery to place an ostomy. It was several more years before a quick encounter with another ostomate set him on the journey of acceptance. Today, Austin runs a podcast and has written a book about his experiences, The Ostomy Guy Story: Memoirs of a Bagman, which is available on Amazon. Listen all the way to end to hear one of the many letters Austin receives from his readers, who are inspired by his story.Continue reading
Finding meaning in an illness journey can be a catalyst for purpose and hope. Dr Selvi Vasudevan endured severe Crohn’s disease that resulted in several surgeries and a relentless series of complications. She was on her chosen path when the disease stole her aspirations and left her without direction. A recommitment to herself and her own healing journey helped her find her purpose again as a healer and prompted her to found Cooking With Crohn’s in order to share what she’s learned with the IBD community.Continue reading
People with IBD are often faced with unexpected challenges that are outside of those being experienced by their peer group. Jen McGregor of Crohnie Clothing found herself grappling with questions about her fertility while still in her early 20s. She had to act quickly in order to preserve her ability to have a biological child. Jen tells her personal story of working through the emotional, physical, financial, and even legal aspects of planning for her future fertility.Continue reading
“Who wants an Oreo?”
A man sits near me in the road, offering Oreo cookies to the bike riders pedaling past him up a massive hill. Another man walks over and asks, “Did you give out cookies last year, too?”
“Probably,” says the man in the road.
“Well, if it was you, it was a highlight for me, getting that cookie. I really appreciated it.”
I am on the sidelines of the IRONMAN Wisconsin race: a feat of endurance for athletes who will swim 2.4 miles (3.86 kms), bike 112 miles (180.25 kms), and run 26.22 miles (42.20 km) in one day. Many of the spectators are previous racers themselves: they sport hats, shirts, backpacks, and even tattoos with the IRONMAN logo.
The inflammatory bowel diseases (IBD) can make people feel powerless and isolated. Participating in day on the Hill events in Washington DC with patient advocacy groups are one way to take back control and have your voice heard by those who can help affect change. Hear from Jaime Holland of Pretty Rotten Guts, who describes her experiences in lobbying on Capital Hill including why it’s important to her, how she navigates the day with mobility issues, and why the experience is empowering.
It’s a celebration of 50 episodes of About IBD! Download your FREE copy of the new single, “IBD Dance Party,” by signing up for the About IBD newsletter here:
Improving the quality of life for people with inflammatory bowel disease (IBD) takes commitment and focus to understanding the issues affecting patients and caregivers. Real change means engaging with all stakeholders, including physicians, industry, and government, as well as patients and caregivers. A future that includes more effective treatments and compassionate care for those touched by IBD will only happen when those who have the best interests of patients at heart take their seat at the table. There are many activists in the IBD community that are doing this hard work and you can strengthen their achievements by amplifying their voices.Continue reading
What’s new in inflammatory bowel disease (IBD) treatments and what’s next on the horizon? Dr Peter Higgins, a gastroenterologist, IBD specialist, and researcher at the University of Michigan discusses what’s new in IBD from the Crohn’s and Colitis Congress meeting in 2019. We talk fecal transplants, healing strictures in the intestines, and the feasibility of custom ostomy products. It’s a conversation about cutting edge research on Crohn’s disease and ulcerative colitis mixed with the practicality of using these treatments in the real world.
People who live with Crohn’s disease or 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.
I was fortunate to see The Matrix on its first run in theaters when it came out on March 31, 1999. We knew little about the movie at the time, just that it was science fiction and it looked amazing and that we would want to see it on the big screen and not later on VHS (DVD was not yet mainstream). The movie came out only a few weeks after my first of two surgeries to create my j-pouch (or IPAA, ileal pouch-anal anastomosis) to treat ulcerative colitis (which is one form of inflammatory bowel disease, or IBD).
I love The Matrix, and how could I not? It contains so many narrative aspects I enjoy, including science fiction, robots taking over the world, an unconventionally beautiful and lethal female character, and a kick-ass soundtrack. To be honest, there are a lot of things about the plot that don’t hold up to serious scrutiny. But that’s fine, it is still amazing and undeniably groundbreaking in both storytelling and technical aspects.
When The Matrix opens, the watcher has no idea what is going on. This is my favorite way to be pulled into a story: absolutely cold, with no frame of reference. There’s no exposition and the narrative plunks you right into this universe that works differently than the one you know. You have to make a decision right then and there, if you are all in and if you’re ready for the filmmakers to take you on the ride and teach you about their world. For me, it was my first time being out of the house and enjoying myself after having surgery, and I was so ready.
(Mild spoilers for The Matrix are contained in this article, so if you haven’t seen it, or haven’t seen it lately, go watch it now. I mean, how can you exist in the world and understand what other people talk about without having seen it?)