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Hi All,

Im an UC sufferer, had to have 3 stage J pouch surgery. Had stage one (colon removed) a few months back, and got stage 2 coming up in April

At first i hear the operation for J pouch is 90-95 percent successful, then a doctor at my hospital said that 33 percent of people regretted the J pouch, and thought the quality of life was better before with the bag.

And if the operation went wrong I would have to have the bag permanently.

Just wondering what the chances are these days of it all being successful, you get told so many different figures and numbers….

Many thanks

Chris

Replies sorted oldest to newest

I heard the success rate was very high so I opted to have the surgery for my UC. After my surgery they did some biopsies and discovered I actually had chron's. My surgeon said there would be a 50/50 chance the jpouch would work. I wish I did more research before my surgery just so I could know what to expect. I was so ready to get rid of my ostomy I didn't do the research i should of. Stay educated and make educated decisions Smiler I wish you the vert best of luck
M
Well. what can I say Chris - I had my operation done at a 'centre of excellence' in London - 2 stage, and it has been a year of absolute hell and total failure ........ I am stuck with a non working pouch adhered to my abdominal wall that will eventually have to be removed - and a permanent ileostomy that I absolutely hate - my 'reversal' lasted all of 4 weeks - and I was visiting the bathroom in excess of 30 times a day prior to disconnection (that was every 15 to 20 minutes.....)It was hell.............
G
"Success" in my mind is measured by what came before versus what came after as far as quality of life. If success is defined as a J Pouch with no complications/pouchitis, then I would not be a defined success. Yet in my mind I was a success because surgery improved my quality of life and as my colon demonstrated when it was removed (it was close to perforating), surgery was ultimately a necessity and not an option.

I have had to treat chronic pouchitis since 1995 and despite that, I consider my 21.5 years with a J Pouch to be much better than my hellacious 20 years with Ulcerative Colitis, which was a downward spiral. My pouch is by no means perfect but it is a manageable and treatable pouch whereas the UC was not.

The before and after on everyone is different so ultimately these success rate stats are very superficially based on statistical information that varies in every case.

I would pay more attention on what the before is in order to project whether success will be achieved. If you have dysplasia and/or your UC has spread through your colon and shows no signs of responding to treatment, then chances of you having a "success" as far as a better quality of life with a J Pouch are obviously higher in comparison to the current situation. Elimination of the cancer threat in cases of dysplasia is HUGE, even though the rectal cuff cancer threat remains. It is nevertheless lower than the colon cancer threat if you have dysplasia.
CTBarrister
quote:
"Success" in my mind is measured by what came before versus what came after as far as quality of life.


I think this is right and is one reason why statistics are so misleading. Many people have such bad UC or other problems that even a poorly functioning J pouch is much better. Some people have such poorly functioning loop ileos that even a poorly functioning J pouch is better.

My criteria would be if there was any contraindication for the pouch to not do it. That is not saying that it cant be successful but having experienced both a poorly functioning J pouch and good functioning end ileo its not a hard call, the ileo wins hands down. As others have said a skilled surgeon definitely raises your odds but doesn’t guarantee success.
C

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