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.
DS
Aug 18, 2024 8:19 pm
Bob 48
Aug 18, 2024 9:06 pm
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.
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Posted by: iMacG5
Hi Crossley. Ya know, I think it’s all about feelings. I don’t mean the pain feelings which could control everything. I mean the feelings inside our heads, our hearts and even our souls. I mean the feelings of who we are now compared to who we were; how we accept our situation or maybe we don’t. My wife asked how I felt and I said, “like crap”. She asked what hurt and I answered, “Nothing hurts, well, everything hurts, I don’t know, It all sucks.” That was a long time ago. You question if your feelings are normal. How normal is it to relocate your butt hole to your belly where it’s usually in the way of your belt and, you know. But that’s where we are and for lots of us we are so much better off than we were before, physically. Emotionally, psychologically, well, that might be a different story. I believe talk therapy is wonderful if we could find a real empathic or sympathetic listener. So guess what! I found MAO and began “talking” with a keyboard with some of the wisest, kindest most sympathetic and compassionate folks on the planet. Regardless of where we’ve been, lots of folks here have been there and worse places and found their way back healthier and happier. We really do help each other.
Keep “talking”,
Mike
Mayoman
Aug 18, 2024 9:28 pm
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.
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warrior
Aug 18, 2024 11:33 pm
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.
IGGIE
Aug 19, 2024 1:24 pm
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
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