J Pouch Issues After Ileostomy - Leakage and Pain

I had a J pouch for 20 years before having an ileostomy. My doctor left the J pouch inside me when he did the ileostomy. This year I'm having what I call leakage from the J pouch. It's painful and life-altering. Does anyone have this situation? My doctor is recommending removal of the J pouch or drainage. Has anyone had the drainage procedure? Does it work? I really don't want another surgery.

I had a j-pouch for 20 years before a fistula grew into a vertebra and caused chronic osteomyelitis. I know you don't have to worry about that now, being disconnected, but if you're having any issues at all, I would choose to get it removed. I also had my rectum removed and sewn up in the same surgery because the colitis there was still causing painful arthritis everywhere. It wasn't an easy recovery, but it wasn't horrible either.

Hi Ds, I've had a J-Pouch for years. I had "Pouchitis" for many of those years and it was horrible! Very painful, never sleeping, etc. I finally had the J-Pouch disconnected but not removed and had my ileostomy created. Most of my problems disappeared once I had the ileostomy created again but came back after a year or two.

Part 2: "Diversion Colitis". Has the doc mentioned this condition?

The ileostomy stoma has two openings. One comes out through your belly into the bag, the other loops down to your J-Pouch. When the bag contains very liquid stuff, some of it can migrate down the wrong side of the loop, most will exit through the stoma but a little of it can end up in your de-functioned J-Pouch. This causes the "Pouchitis" to continue even with the J-Pouch not functioning because there is still a pathway from your stoma to your J-Pouch. I would often find bits of partially digested carrot or broccoli coming out my butt even with a de-functioned J-Pouch! This puzzled me at first but should not have puzzled my surgeon or gastro specialist, they knew the mechanics of how it got there or should have known!

The pain, like shitting shards of broken glass, continued. The docs were of no help at all. I found "Absorbagel" and the liquid in the bag now turns to a sludge that will not travel to the J-Pouch when I lie down. I believe that this is what stopped the "Diversion Colitis". All the stuff now comes out through my stoma and none travels/none is diverted down to the J-Pouch. Right now the pain and excruciating cramps have stopped and my life is so different and so much better.

An attempt was made to remove my J-Pouch but that was not possible because of dense, dangerous scar tissue. Removal of the J-Pouch should help with your problem greatly, if it can be removed.

Best of luck ☘ Magoo.

It never ceases to amaze me why some organs are left inside our bodies being nonfunctional. Can you imagine several inches of disconnected intestine, left inside you, just like a piece of garden hose hanging off the rack?

That was my case in hopes to reconnect those several inches to the small intestine. I believe it's called an IRA.

After a few years waiting for that surgery, we couldn't control the leakage from the leftover colon. Sadly, that piece developed Crohn's. The end result, kenn butt and perm ileo.

Anyone lucky enough to keep any pouch system inside them should count their blessings. It's a time bomb. Fact.

G-Day DS, I can't understand why he left your J-Pouch in. I had a J-Pouch for 18 years and when I told my surgeon to get rid of it, he also removed my rectum and anus and stitched my butt hole up as well. The only reason he left it in is that he gets paid for two operations; now you have to have it removed. Good luck. Regards, IGGIE

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister