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Ulcerative Colitis total Colectomy w/ Ileal J pouch

Posted by jvh1 @jvh1, Feb 16 7:34am

I had a total Colectomy with an Ileal anal J pouch back in 1990 and have dealt with it all these years. But now having a lot of consistent j pouch pain, abdominal pain, etc. Diet doesn’t help no matter what I consume. Not I don’t eat anything after 1:00 pm to try to mitigate the pain at night. Up every 2 hours to evacuate. Sleep distress is chronic. Any words of advice as to any more coping mechanisms?

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Mentor
Susan F, Volunteer Mentor | @susanf8 | Feb 26 7:42pm

I had a total colectomy and j-pouch done in 1987. At the time I was diagnosed with UC. The pouch was never very successful, I had chronic pouchitis and was on daily antibiotics for most of the 15 years, and still suffered from anal abscesses, fistulas, and pain.

In 2002 I decided to have the j-pouch excised and go with a permanent ileostomy. It was a really tough decision, because I *really* didn't want an ileostomy. But my quality of life was not what I wanted; I couldn't do the things I wanted to do, I had to wear pads because of leakage and my skin was not in great shape, and I was going to the ER with blockages pretty often.

Have you been to a GI doctor with your symptoms? A scope might be a good idea to see what is going on.

It might not be the solution that you are looking for, and I wasn't exactly jumping for joy when I first got the ileostomy, but I now have a healthy life and it has been worth it.

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jvh1 | @jvh1 | Feb 27 7:00am
In reply to @susanf8 "I had a total colectomy and j-pouch done in 1987. At the time I was diagnosed..." + (show)
Profile picture for Susan F, Volunteer Mentor @susanf8

I had a total colectomy and j-pouch done in 1987. At the time I was diagnosed with UC. The pouch was never very successful, I had chronic pouchitis and was on daily antibiotics for most of the 15 years, and still suffered from anal abscesses, fistulas, and pain.

In 2002 I decided to have the j-pouch excised and go with a permanent ileostomy. It was a really tough decision, because I *really* didn't want an ileostomy. But my quality of life was not what I wanted; I couldn't do the things I wanted to do, I had to wear pads because of leakage and my skin was not in great shape, and I was going to the ER with blockages pretty often.

Have you been to a GI doctor with your symptoms? A scope might be a good idea to see what is going on.

It might not be the solution that you are looking for, and I wasn't exactly jumping for joy when I first got the ileostomy, but I now have a healthy life and it has been worth it.

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@susanf8 Thanks you for your input. I haven’t had the complications like you had so far. I did get it scoped about 4 years ago finding pouchitis with medication subsided it. I guess I need to go in again. So tired of all the Dr’s and hospitals. Again , thank you so very much. Jeff

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Mentor
Susan F, Volunteer Mentor | @susanf8 | 4 days ago
In reply to @jvh1 "@susanf8 Thanks you for your input. I haven’t had the complications like you had so far...." + (show)
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@susanf8 Thanks you for your input. I haven’t had the complications like you had so far. I did get it scoped about 4 years ago finding pouchitis with medication subsided it. I guess I need to go in again. So tired of all the Dr’s and hospitals. Again , thank you so very much. Jeff

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@jvh1

Let us know how it goes. It sounds like you have had a pretty successful run with your j-pouch; I hope that continues!

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