I had a j-pouch that worked well for over 30 years. Las summer I began having problems. Long story short, it was repaired in December and I had a temporary illeostomy placed at that time. The illeostomy worked well and I felt healthy and strong. On June 7th the ostomy was taken down. Right now I am exhausted with intermittent nausea and pain and on a full liquid diet. I’m getting depressed about this and wondering if I should have kept the illeostomy or if I can go back to it. I seem to be emptying ok but only liquid and gas. I don’t really remember the original take down very well and wondering what I should expect and not expect on this journey.
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Thanks a bunch Kmiller
Yes I'm on full liquid. I'm passing gas, the nausea is hardest to deal with. My bowels seem to be moving well at time, but sometimes it comes slow. But it's all kind of a thicker liquid. Not sure what to expect in the way of improvement
Congratulations on take down.
Sorry your having issues. Do you think it might be a blockage???
Thanks Lauren
Don't think it's a blockage, I am having a lot of output, but I do get nausea without any cramping. I am wondering if these symptoms are to be expected with a take-down which happened on June 7.
Going back to my takedown days, I think i definitely had the same thing.
When do you see your doctor again???
Not until July, I had to travel to Cleveland from Colorado. But there are people I can see in Denver if need be.
Yeah I hear that a lot on this forum about people having to travel to other states for help. That is very common since our Jpouch is a very new surgery, under 50 years old.
Glad to the take-down was worked for you.
And thanks for the replies Lauren, it really helps to chat with someone who know.
Yeah sorry you had to go through a repair. If you do not mind me asking, what caused you needing a repair???
I had a septum that was intermittently obstructed the pouch (once or twice a year ). It finally became near permanent obstruction. There was a possibly that it could have been repaired anally, that wasn't the possible so they had to go in through the abdomen..
Damn that sounds scary!!! Where was the septum located originally???
There was a mucosal bridge in the distal pouch body and two "entrances" into the pouch body from the cuff. And there was pouch body prolapse caused by the obstruction.
Oh shit!!! I am sorry that happened to you, I wonder why this stuff happens to us. The doctors make it seem the surgery is our peace but sometimes its not unfortunately.
Do you have a good family or friend support system???
Yeah my wife is a retired nurse, she's great. It seems the jpouch portion of my intestine is taking longer to wake up as they say.. The just messaged me o go back to clear liquids, it's been almost two weeks, not sure how long my body can sustain clear liquids.. Was wondering if going back to an illeosotmy would be since it has been working for last six months . I was under the impression that this would easier than the first surgery six months ago
Okay, I am glad you have a good support system! MAke sure to drink lemonade to keep your sugar normal.
And yeah I understand what you mean about the ileostomy. It might be better to explore all of your options with the J-pouch or possibly other procedures so you do not have regrets down the road.
Hi...I'm sorry to hear about your issues and hope that you start feeling better soon. I also have a 30+ year pouch and have had a ton of problems recently. Do you mind telling me who you worked with to identify your issues and who did your ileostomy? I'm also wondering if the ileostomy they gave you was an "end" or a "loop" since it seemed to work well for you.
Good luck ...and I hope you're soon on your way to a strong and complete recovery.
Thank you ElizaB
It was Dr. Holubar at Cleveland Clinic did the surgery. He was also instrumental in identifying the issue as well. Dr Benjamin Click ( University of Colorado health ) did the scope which Dr. Holubar said was very helpful. And I believe I had a loop illeostomy. Good luck and I hope you get resolution to your issues.