Options for a failed j-pouch:
1. If you really want to avoid any sort of ostomy, then there is always the option of pouch reconstruction, pouch advancement, etc. This is where they either remove or repair what is structurally wrong, or take out the existing pouch and build a new one from scratch. Only a surgeon that is experienced in pouch salvage or reconstruction could tell you if you are a good candidate.
If ileoanal pouch salvage or redo is off the list, here are the other options:
2. Diverting loop ileostomy, keeping the pouch intact. This is often suggested as an option for pouch rest, "so it can heal." Then at a future time, you reconnect. Sometimes it works, sometimes not. If it doesn't, it just seems like wasted time and effort.
3. End ileostomy, while keeping the j-pouch intact. This can be a permanent solution in some situations, if the pouchitis goes into remission and having to empty the pouch of mucous periodically does not bother you. It gives the benefit of an easier to manage stoma, without the huge surgery of pouch removal. It can even be done with Crohn's.
4. If you really are opposed to an external appliance, then there is the continent ileostomy. No bags to wear, but you drain the reservoir with a catheter periodically. So, there is equipment you need to carry with you. If your current pouch is in decent shape, it could even be used to create the continent ileostomy reservoir. Removed or reused, the rectum is closed. It could be in the form of a "Barbie Butt," where the sphincters are removed, along with the anal canal, or the sphincters may be spared and the anus is left intact, with a short "blind" end. Continent ileostomies are not perfect, and have a fairly high reoperation rate, but can be a good choice for those who are motivated. The biggest issue I see is that it is a highly specialized surgery, so you may have to travel distances for aftercare and/or maintenance. If you go to the k-pouch forum, there is a master list of surgeons who performs these.
There are a few different types of continent ileostomies, each with pros and cons:
A. Kock pouch- oldest style with what is called a nipple valve. There have been improvements over the decades. This is what they do at Cleveland Clinic.
B. BCIR (Barnett Continent Ileostomy Reservoir)- this type uses part of the intestine as a collar around the exit to provide continence. There are select surgeons who prefer this method, and a few centers that specialize in them.
C. T-pouch- I don't see much on this one anymore. It was sort of an experimental design that I used to hear of about 10 years ago. I think a high complication rate caused it to fall out of favor, or it really was not an improvement in design. I am not sure anyone does them anymore.
Good luck Jilly! There are a lot of folks here who had thier pouches removed or defunctioned, so you are in excellent company.
Jan
