Why I Decided To Make My Ileostomy Permanent

Publish date:

When my surgeon and I were talking about a colectomy in the hospital, she mentioned leaving a couple inches of rectum in place. Partially because it was so inflamed that she wasn’t comfortable operating there, but also for the possibility of having my ileostomy reversed and going the J-pouch route later on.

I told her no J-pouch, but she didn’t believe me. I’m in my 20’s, so maybe the doctors didn’t feel I was mature enough to make such an important decision as to removing my entire colon, especially while still taking steroids. At my follow up appointment, she told me I’d need to either get my stump (4 inches of rectum & anus they left) taken out or do the J-pouch within the next 2-3 years. I figured, great, I have time to think about it, and boo, now all of my decisions will be based upon when that surgery will be done. Boy do I not enjoy surgery. Oh wait, who does??

Coltrane for life.

I’m not sure how Coltrane (my stoma) feels. If he’s happy seeing the world through my clothes or if he’d prefer being back inside my body, anyway I’ve made my decision. I’m going to make him a permanent part of my external body by having them take out the “stump.”

It was never really a question for me. My reasoning is that the couple inches they left of my rectum is still affected by the disease and it reminds me of that almost every day, multiple times a day, often with urgency. Having a J-pouch requires just a little bit of rectum to be left, but what’s the point if you still get flares? Also, still having a little bit of my anus and rectum means still being a prime candidate for colon or rectal cancer – no thanks!

“But you’re so young, are you sure you don’t want to give the J-pouch a try?”

I can’t tell you how many people questioned my certainty in a permanent ileostomy. The fact is, in addition to the logic above, I’ve met a number of people who have had a lot of complications with their J-pouch. If I went the J-pouch route and ended up with complications, I’d have to have a reversal surgery and worry that Coltrane #2 won’t be nearly as awesome as Coltrane #1. This is just my thought process and what my gut is telling me to do, so I’m listening.

I’ve also met a number of people who are happy and healthy with their working J-pouches. I encourage everyone to do their own research and talk to their surgeons before making a “permanent” decision.