One of the first things I was told about when I found out I had ulcerative colitis was a J-pouch. All of the literature I received on treatments for UC mentioned the J-pouch, as if getting one was like snapping your fingers and being “normal” again. “No one will even know it’s there!” “You can go to the bathroom ‘normally.'” “You’ll be ‘cured’ and back to your old self!” Years later, I knew pretty darn well that there was nothing easy about getting a J-pouch or adjusting to one, thanks to my lovely friends who live with one. However, J-pouch surgery is still considered the “typical” surgery for most people with UC. So why didn’t I get one?
1. We weren’t sure what type of IBD I had. As I said in a previous entry, I had at various times been diagnosed with ulcerative colitis or indeterminate colitis. Total proctocolectomy with end ileostomy (what I decided to get) would have worked for either and wouldn’t have left me with the risk of recurring disease in a J-pouch.
2. Multiple surgeries. When my surgeon told me that he would most likely be able to take my colon, rectum and anus in a single surgery, I was on board. I’ve lost too much time being sick and didn’t want to lose any more. I also didn’t want to undergo the multiple surgeries that a J-pouch requires and have my diseased rectum inside me for any longer.
3. I just wanted to feel better. See above. Also, while there are many people who are happy with their J-pouches, I also know many people who struggle with theirs. Pouchitis, cuffitis, finding out they actually had Crohn’s, incontinence issues, failure that requires going back to an ostomy… not worth the risk for me personally.
4. Gut feelings. While having IBD has often made me wary about trusting my gut (ha!), I had a feeling that a permanent ileostomy was right for me. It wasn’t a case of “well, I’m not really sure which surgery I want,” it was the awareness that there was no other right option for me. It’s important to be aware of all your options, but once you are, you really need to trust yourself.
5. I didn’t want one. I’ve definitely gotten the reaction of “why wouldn’t you try a J-pouch!?” The consensus of people who know very little about IBD seems to be that a young woman should care more about how she looks than what she wants or how she feels. I would most likely have been very unhappy with a J-pouch, as not only could I possibly have had physical complications, I didn’t want one. I certainly wasn’t going to make a permanent, lifelong decision based on anything other than what I and my surgeon decided would be best for me. Also, “try a J-pouch” and have to undergo even more surgeries if it didn’t work!? No thank you!
This certainly wasn’t written to dissuade anyone from getting a J-pouch. That’s a decision that needs to be made with your surgeon and doctor when the time comes. However, getting a permanent ileostomy was the right decision for me, and I’m very happy with that decision so far.
🙂 Sarah
Sarah I love ur 5 reasons!my 9yr old has been offered both surgeries and same as u opted to sew up his bum.after surgeons chat with him we asked him what he thinks and he very firmly told surgeon that he wants his bum sewn up and to keep his stoma as it’s part of him and it’s to stay. I can honestly say he has made me the proudest mum and I am happy he was firm with what he wants. We are now looking forward to the operation and getting my son healthy and strong and hopefully getting his education and friendships back on track after 6 long years of being a slave to colitis
Hi Debbie,
I’m glad you enjoyed my post! It’s been over two years since I wrote this post, and I’m still very happy with my permanent ileostomy. I am glad your son has made the best choice for him, and I wish him the best of health in the future!
Sarah