One of the first things my doctors told me about when we discovered I had ulcerative colitis was J-pouch surgery, and all the literature I received on treatment for UC also mentioned the J-pouch. What's a J-pouch you ask? It goes something like this: when the colon and rectum need to be removed, a colorectal surgeon creates an internal “J” shaped reservoir out of small intestine which connects to the anal canal to store and pass stool.
People have said, "No one will even know it's there!" As if having this done is like snapping your fingers and becoming "normal" again.
"You can go to the bathroom normally."
"You'll be cured and back to your old self!"
Thanks to my lovely friends at Girls With Guts who live with one, I knew pretty darn well that there was nothing easy about getting one or adjusting to it. However, an ileoanal reservoir procedure is still considered the "go-to" surgery for most people diagnosed with ulcerative colitis.
So why didn't I get a J-pouch?
1. Wasn't sure which type of UC I had
I had at various times been diagnosed with ulcerative colitis or indeterminate colitis; both belong to a group of conditions known as inflammatory bowel disease (IBD). Having a total proctocolectomy with end ileostomy (what I decided to get) would’ve worked for either diagnosis and wouldn't put me at risk of possibly having the disease recurring inside the J-pouch reservoir.
2. Multiple surgeries were involved
When my surgeon told me that he would most likely be able to take my colon, rectum, and anus in one single surgery, I was on board. I didn't want to undergo the three-step procedure that a J-pouch requires, nor did I want my diseased rectum inside me any longer. I've lost too much time being sick and didn't want to lose anymore.
3. I just wanted to feel better
While there are many people who are very happy with their J-pouches, I also know many people who struggle with it. Pouchitis, cuffitis, later finding out they actually had Crohn's disease (instead of UC), incontinence issues, etc. J-pouch failure requires going back into surgery... not worth the risk for me personally.
4. I went with my gut feelings
While having IBD has often made me wary about trusting my gut (HA!), I had a good feeling that a permanent ileostomy was right for me. It wasn't a case of, "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 your instincts.
5. I didn't want one
I've definitely gotten the reaction: "Why wouldn't you try a J-pouch?" The consensus of people who know very little about IBD seems to think that a young woman in her 20's should care more about how she looks, rather than what she wants or how she feels. Most likely, I would've been very unhappy with a J-pouch, not only because might I have physical complications, but more so I didn't want one. I certainly wasn't going to make a permanent, lifelong decision based on anything other than what my surgeon and I decided was 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 going through with J-pouch surgery. That's a decision each person needs to make with their medical team when the time comes. Getting a permanent ileostomy was the right choice for me and I'm very happy with that decision so far.
Article credit: Girl Meets IBD