Why I Decided To Make My Ostomy Permanent

Coltrane for life.
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When the surgeon and I were talking about my colectomy in the hospital, she mentioned leaving a couple of inches of rectum partially because it was so inflamed she wasn’t comfortable operating, but also so that I’d have the possibility to have my ileostomy reversed and go the j-pouch route. I told her I wouldn’t be doing that but she didn’t believe me. The doctors didn’t feel like I was mature enough to make such an important decision as to taking my colon out, especially not while on steroids.

At my follow up appointment, she told me I’d need to either get my stump (the 4 inches of rectum and anus they left) taken out or do the j-pouch sometime in 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 I’ll get that surgery done. Boy, do I not enjoy surgery. Oh wait, who does??

I’m not sure how Coltrane (my stoma's name) feels — if he’s happy seeing the world through my clothes or if he’d prefer to be back inside my body, but I’ve made my decision. I’m going to make him a permanent part of my external body by having them take out my “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 ulcerative colitis and 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 even tell you how many people questioned my certainty of wanting a permanent ileostomy. The fact is, in addition to the logic above, I’ve met a number of people over the last nine months who had j-pouches and had a lot of complications, or that had one that worked fine for a long time but then had to be reversed, so I’m not confident in the j-pouch science yet. If I went the j-pouch route and ended up with complications (now or down the road), I’d have to have a reversal surgery and worry Coltrane #2 won’t be nearly as awesome as Coltrane #1 is. This is just my thought process and what my “gut” tells me to do, so I’m listening. I do know a number of people who are happy and healthy with their working j-pouches and encourage everyone to do their own research and talk to their surgeons before making such a big decision.

I hope Coltrane continues to be a contributing member of my body and that we get along until death do us part.

Article credit: Newbie Ostomy