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I am considering having a J-pouch but am not sure if I am just going to be exchanging one set of problems with another.  I am quite healthy now after 5 surgeries and have a Brooke Ileostomy.  My problems are frequent leakage and skin issues related to psoriasis around the stoma as well as the leakage.  I live in Hawaii and avoid going in the ocean due to irritation of my skin around my stoma.  And I hate all my friends running around in bikinis while I am in a one piece with shorts.  My concerns with the J-pouch are leakage during sex, flatulence, leakage in general and not being able to hold it long enough to enjoy a hike or other activity without a nearby restroom.  Do any of you wish you had stayed with a bag or are you happier with the j-pouch? 

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Sort of a loaded question. Sure there are those with regrets.

 

But, far more are happy with their choice. I can hike for hours (when my arthritis permits), and live what I consider a normal life. But, I had my surgery at nearly age 40, so my bikini days wrre over after my second child. 

 

If you want guarantees, you need to stick with what you have, and even that is no guarantee!

 

Jan

Jan Dollar
Last edited by Jan Dollar

K pouch, J pouch, end ileo or any surgery that reroutes the intestinal tract comes with their own set of issues. Some easy to deal with and some not so.

But then again, no one gave you a guarentee with your colon either.

A happy and healthy j pouch can give you an exceptional quality of life and allow you to enjoy all of the things that you feel that you are missing out on now. They can make you one, perfectly. But they cannot promise you that it will be and stay healthy.

The advantage is that if they do make one and it works out you get that quality of life that you desire... if ever it does not work out you can always go back to an end ileo and have no regrets. You will at least have tried.

It is such a shame to live in such a beautiful place and to not enjoy the ocean...

That is my personal opinion. Hard decision...good luck

Sharon

skn69

I think its hard to say. If you are really miserable with your ileostomy, you should go for it especially if you haven't had any signs that you have misdiagnosed Crohn's and you are generally very healthy. I had one for a year before getting my pouch and I hated almost every minute of it. I have very sensitive skin and nothing prevented the adhesives from pulling it off or burning my skin. Combined with fairly frequent leaks, my skin was a mess and I would cry every time I had to change my flange. I ended up with a very healthy pouch but I was young when I had my surgeries (14) and I am not sure how much this affects the outcome. I have had pouchitis once in 15 years and I don't seem to get stomach bugs that cause diarrhea more often than a normal person. Of course, our normal pouch output is basically diarrhea to someone with a normal colon... As far as gas goes there are pros and cons to a pouch. You will be loud when you use the bathroom but unless you are really really confident that its just gas, you probably aren't going to be passing gas in public. I almost always err on the side of caution and use the bathroom if I feel gassy to avoid accidents.

 

I grew up in Alaska skiing, hiking, and boating and have rarely had issues. Of course, most of the places we went, I could go where ever I needed to. Have a lookout and never ever forget a bag of clean TP and a bag for dirty TP. I haven't had any leaks during sex (I can tell if I might have issues and skip sex when I feel sick) and I've had maybe 2-3 accidents since I got my pouch and they were at night. 

 

Good luck with your decision!!!!

L

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