I lost my jpouch 2 years ago because the connection between rectum and jpouch was no longer
working. My surgeon refused to do anymore surgery on me. I have a permanent illestomey
and I hate it so much. Does anyone know of any surgeon who would be willing to do another jpouch surgery on me.
since you have no replies i`ll give you my opinion. my opinion is that the j-pouch is at best a temporary solution, most who have them find that they fail after a few years. i am not aware of anyone who has had one long term with no problems {i could be wrong}. i also think that a lot of MD`s install a j-pouch to lessen the paitents fear of having a "permanent ostomy" thinking perhaps that medical science will develop a better medicine or procedure the manage the original cause of the ostomy. i think you`d be wise to simply learn to manage the ileo .... lots of people can live fairly normal, active lifestyles with one. again, this is only my opinion, based on what i have observed. good luck with whatever you decide.
MeetAnOstoMate is a pretty cool site with 40,088 members.
There are people here from all walks of life - musicians, firefighters, academics, artists, photographers, paramedics, police officers, teachers, mechanics, entrepreneurs, surfers ... and they all have a stoma.
The main thing is - here, everybody understands what you're going through. And that feels good.
Many come for advice, others stay for the friendships. Some have even found love!
And it's not all about ostomy - we talk about everything.
🔒 Privacy is very important - your profile is not visible to the outside world.
Good morning, I too had a j-pouch that failed. I had my original surgery in 1989 and in 2004 I had to have my ostomy surgery due to a bowel blockage and narrowing of the j-pouch to the anus. Not fun!!! Anyway, I had my j-pouch for approximately 15 years. Not too sure if anyone else with a j-pouch has surpassed that length of time. So far, I am managing "Betsy" with a few minor mishaps. I had a hard time convincing the surgeon to remove the j-pouch because of a nasty discharge which turned out to be a huge abscess which kept filling and draining. Finally had it removed in April 2006. For me, having the ileostomy is (was) the best thing I've ever done.
Sometimes it is hard to get a doctor or surgeon to understand what is going on. They don't know what it is like to live with a j-pouch and the problems that are associated with it. Their only job as a surgeon is to cut and try to make it "better". I have never known any surgeon who had any complete knowledge of what it is like to live with a disease such as colitis or crohn's, let alone living with an ileostomy.
Best of luck to you and your quest to find someone willing to do another j-pouch surgery.
Josie's mom