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Posted 11/19/2012 11:03 PM (GMT -5)
I have a j-pouch, but it's not connected to anything, I was curious if it would be best to have it removed, since I most likely will never have a take down surgery, I did have a take down 2 different times, and it didn't work, I know this is a question for my doctor, but I was just curious as to what you all thought.

Dusti
Posted 11/20/2012 3:53 AM (GMT -5)
I think you're right.. it's got to be healthier to have it removed. Although that means another surgery.
Posted 11/20/2012 4:50 AM (GMT -5)
Yeah, more scar tissue too
Posted 11/20/2012 9:08 AM (GMT -5)
If it is not bothering you, not causing you pain or affecting your quality of life... then there is absolutely no reason to have it removed. My colorectal surgeon - absolutely best in the country, has told me that many many people simply get a "diverting ileostomy" when their jpouch fails and live just like that indefinitely. For some such as myself, this situation did not work, my body was basically attacking itself - diversion pouchitis, huge joint pain, abdominal pain, tons of output out the backside.. having to use the restroom 20+times a day, etc... so I had to have the jpouch removed.
I do think if you leave it in there, you need to have periodic scopes as they are now finding cancer in jpouches.
Posted 11/20/2012 9:19 AM (GMT -5)
I do sometimes have output from my jpouch, it's kind of like thick dark mucous, but it's not all the time.

Cancer in the jpouch?! That's a bit scary!
Posted 11/20/2012 10:23 PM (GMT -5)
ddd who is your surgeon? Rosemary
Posted 11/21/2012 10:01 AM (GMT -5)
dr. remzi, head of colorectal surgery at cleveland clinic

also yes... dr. shen.. who is the jpouch guru of the world, also at cleveland clinic, has said many times recently that they are now finding cancer in jpouches. He mandates yearly scopes for anyone with a jpouch - connected or not.

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