For those with failed Jpouches, do you have the ostomy bag set up where you can still re-connect your jpouch or did you choose the permanent bag where you cannot go back to the Jpouch. What are the pros and cons of each?
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I actually have wondered about this as well. I think that some people can leave the pouch there unconnected but I don't know what the pros and cons are. Maybe someone can fill in who has done it.
For people with failing pouches, it would be cool to be able to do leave the pouch there in case a new med comes that solves the problem.
For people with failing pouches, it would be cool to be able to do leave the pouch there in case a new med comes that solves the problem.
I would definitely not recommend leaving the pouch in place. I tried this as have others and it usually doesnt work because there are excretions from the disconnected J pouch that are very difficult to deal with. I thought it would be no worse than the mucus I had with a loop ileo as part of the two step J pouch procedure but it was far far worse. I know there are some people it works with but not me. In addition because the blood supply remains hooked up to the pouch with me I did not get a good stoma. Eventually (six months later) I had the J pouch excised and a stoma revision and I am happy with the results. Best to make your decision and just move forward.
In theory I probably could have another J pouch as I did not have my anus removed as most people do but I would never really consider it. Some of the underlying problems with the J pouch still exist and these surgeries take a toll and I hope I am done. As I said I am satisfied with the end ileo and compared with my J pouch it is great.
In theory I probably could have another J pouch as I did not have my anus removed as most people do but I would never really consider it. Some of the underlying problems with the J pouch still exist and these surgeries take a toll and I hope I am done. As I said I am satisfied with the end ileo and compared with my J pouch it is great.
The majority of failed pouches fail due to chronic med-refractory pouchitis, and diversion (temporary ileostomy) is not super great at relieving pouchitis. So it does seem that most people don't really feel BETTER until the pouch is removed, not just disconnected. It can be a different story for mechanical issues like a pouch that is built incorrectly, stricture, fistula, etc.
I have an end ileo...my j-pouch is still in there, just not connected. My surgeon wanted to do it this was in case there was any breakthroughs in the medical field that would allow me to get it hooked up again. I have been very lucky that I have not had any more issues since the disconnect. There would have to be a pretty big breakthough with a very high gaurantee before I would have my j-pouch re-connected.
Mine was disconnected due to chronic pouchitis and reoccuring fistulas...good luck. :-)
Mine was disconnected due to chronic pouchitis and reoccuring fistulas...good luck. :-)
Did disconnect initially...it was awful. Still had pouchitis plus 4-8oz of mucous discharge DAILY. Had pouch removed 18 months after disconnect. Love my end ileo - had it since 2001, pouch gone since 2003. Have since had 2 babies (now 7 and 5).
was disconnected initially because I was far too sick to have a major major operation. The disconnect is not really a big surgery in the scope of what we've all been through. so my surgeon said - disconnect and then decide later for redo or ripout!
With disconnect, like jill, I had horrid diversionary pouchitis. Dr. shen tried every trick possible and things just kept getting worse. Going to the bathroom about 12x/day with dischargy gunk, horrid abdominal and back pains, joint problems. After 20months I had the jpouch removed. I LOVE my permanant end ileo.
With disconnect, like jill, I had horrid diversionary pouchitis. Dr. shen tried every trick possible and things just kept getting worse. Going to the bathroom about 12x/day with dischargy gunk, horrid abdominal and back pains, joint problems. After 20months I had the jpouch removed. I LOVE my permanant end ileo.
So when you have the jpouch removed and a permanant end ileo - is any intestine actually being removed from your body? Or is the pouch just turned back into the small intestine ileo like before surgeries and then diverted out through the abdomen?
In the case of end ileostomy, the j-pouch is removed and discarded. Sometimes, they can reuse the j-pouch to make a Kock pouch, but not if it is riddled with disease. This is mostly in the cases where there are functional issues, like poor sphincter function.
Jan
Jan
I am just recovering from surgery for loop ileo needed due to pouch sinus caused by chronic pouchitis. Is there any treatment for healing the sinus? Is there any hope of healing and reversal? Thank you.
ep, Dr. Shen, the infamous GI doctor at Cleveland Clinic, has had much success with needle/knife and doxyclycline injections for sinuses. He has been doing this for several years now.
This link refers to a paper that is over a year old, might I suggest you share it with both your GI doctor and surgeon.
http://www.ncbi.nlm.nih.gov/pubmed/22390150
This link refers to a paper that is over a year old, might I suggest you share it with both your GI doctor and surgeon.
http://www.ncbi.nlm.nih.gov/pubmed/22390150