Coltrane for life. Why I decided to make my ostomy permanent.

When the surgeon and I were talking about my colectomy in the hospital, she mentioned leaving a couple 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 ostomy 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 & 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) 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 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 shot?”  I can’t even tell you how many people question my certainty in a permanent ileostomy.  The fact is, in addition to the logic above, I’ve met a number of people over the last 9 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.

How/Why did you decide to make your ostomy permanent or construct a j-pouch?

2 Comments on “Coltrane for life. Why I decided to make my ostomy permanent.”

  1. Interesting reading.. I have a colostomy, so I really can’t comment, but I do wonder if there is any harm in doing nothing for a while longer. Why do the doctors feel that you have to make a decision one way or the other now? If I had to make a definite decision one way or the other, I think I would agree with you, but my opinion doesn’t really count as I have a permanent colostomy. I can say though, that a permanent ostomy is not the worst thing in the world. I have had mine for 5 years, and life is fairly normal. Good luck and keep us posted.. Dave

    1. I think the doctors figure, the longer you wait, the higher your risk for developing cancer or having complications during the procedure would be. Also, people tend not to go back for routine maintenance/scoping to make sure they’re healthy so my doctor probably figures that by giving me a timeline, I’m more likely to adhere, reducing risks down the line? Who really knows though huh! I’m glad you’ve had an overall good experience with your ostomy Dave, it’s so encouraging!

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