Ah, the misconceptions surrounding inflammatory bowel disease. There are a laundry list of beliefs, thoughts and mindsets that blur reality. Misconceptions, while often not malicious, can have damaging effects. As a Crohn’s patient myself, I hear all too often that people believe once someone with ulcerative colitis has their colon removed…that they are cured. This is simply not the case. This week, I hand over the reins to my friend, fellow Patient Advocate and blogger, Shawntel Bethea. As someone who battles ulcerative colitis, she offers insight into life with a j-pouch. I’ll let Shawntel take it away…
I started experiencing symptoms of IBD as a child and I was officially diagnosed with ulcerative colitis as a teen. My life was forever changed. For a while, it seemed as if my life had become a constant battle between myself and my symptoms. By age 22, I had tried (just about) every medication on the market. I tried “natural healing.” I tried crazy theories I found in a Google search. I also tried steroids, pills, injections, infusions, you name it. After failing Entyvio, my doctor recommended surgery. Well, three surgeries to be precise. The ileal pouch anal anastomosis (IPAA), also known as the “j-pouch.” Fast forward more than four years since that conversation, three years post completion of the surgeries and here I am! Cured, right!? Wrong.
There is no cure for IBD
Although there are misconceptions and misinformation that state otherwise, having a j-pouch is not a cure and shouldn’t be presented to patients as such. The j-pouch is an operative approach. The j-pouch is a treatment option and for me personally, my j-pouch has given me a second chance at life. But I am not cured. I still have IBD. I am still coping with autoimmune disorders and I will likely be on medication(s) for the rest of my life. Does that sound like a cure to you?
Still not convinced? Let’s see what IBD specialists have to say about the topic. At the 2017 Advances in Inflammatory Bowel Disease (AIBD) conference, I had the chance to ask Dr. David T. Rubin, an award winning, board-certified gastroenterologist and IBD specialist who also serves as a Co-Director of the Inflammatory Bowel Disease Center at the University of Chicago Medical Center, a few questions regarding the issue. I asked Dr. Rubin how he refers to his (ulcerative colitis) patients post-colectomy. He simply stated, “they are IBD patients.” He expanded on the topic by mentioning that removing the colon does not address the immune system and issues related, also speaking on the complications that may come along post-op and/or in the future..
I also spoke with Dr. Peter Higgins. Dr. Higgins is the director of the IBD program at the University of Michigan. Dr. Higgins is also a board-certified gastroenterologist, specializing in IBD. I started by asking Dr. Higgins the same question, I wanted to see what he classified his ulcerative colitis patients as post-colectomy: does he consider his patients cured of IBD entirely? He said the same thing as Dr Rubin. Stating post colectomy, he definitely still considers people as IBD patients. Continuing on to say, “All ulcerative colitis patients have autoimmune intestinal disease. The genetics and the state of the gut immune system do not change after colectomy.”
IBD is not black and white
It’s much more than just Crohn’s and Colitis. There is much more to consider than just the colon and/or the immune system. There is no cure for any form of IBD. Patients should be aware of this. As Dr. Higgins stated, “70-90% of patients will feel (nearly) ‘cured’ if expectations are set properly.” A j-pouch is a treatment option that can help greatly. It may improve quality of life for many patients, but an improvement is not the equivalent of a cure.
The importance of proper expectations cannot be stressed enough. My surgeries were difficult and didn’t come without risks. I do not regret having my surgeries and I would recommend consideration of this option to other ulcerative colitis patients (depending on the circumstance), but I would also recommend doing your research and making sure you have a knowledgeable gastroenterologist/IBD specialist on your team.
Stay tuned to Shawntel’s blog to read more about her interview with Dr. Higgins.
Shawntel Bethea is a Patient Advocate and Blogger at ChronicallyStrong.com. Shawn was diagnosed with Ulcerative Colitis at 17-years-old and now works to raise awareness for IBD as well as Mental Health / Illness. She uses her story to comfort and empower patients to become partners in their own healthcare.