Just curious, have any of you on here had the j-pouch surgery for UC, onlt to be diagnosed with Crohn's? Did the j-pouch fail? My husband has a stricture and two fistulas in his pouch of 20 yrs and they recommend trying Humira and removing the j-pouch for an ileostomy. Local doc says "the j-pouch is shot." We are looking at going to Mayo. Just wondering if anyone else had this done and what the recovery time was? Thanks so much!
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I would definitely get a second opinion (including confirmation of Crohn’s) before having the j pouch removed. If the pouch must go, there is a possibility that a K pouch or a BCIR might be options. Those procedures do not require having an external bag. However, these options are recommended only for a limited number of those with Crohn’s. Mayo is excellent, but they do not do the K pouch or BCIR.
Do you mind if I ask how long he has had his symptoms ? Could the stricture have caused the fistula? I have one too and doc says if you don't treat stricture you you can develop a fistula and I clearly do not have crohns.
Jeane- it's been about a year. The symptoms began with increased frequency. Strictures seem to be a cause of fistulas but I'm not a physician. When he had the first surgery the j-pouch was closed with sutures. The jp drains failed and unraveled the sutures. That caused a sinus cavity which is similar to a fistula. It got so big it eventually eroded a portion of his tailbone. When j-pouch #2 was created, that physician stapled it at the anastamosis. That pouch lasted him a good 20 years.
Yikes, I am so sorry for you both.
I have a j-pouch (since 2005) but now have a permanent ileo; the pouch was not removed, but disconnected. I have multiple fistulas and a Crohn's diagnosis; no treatment worked for the fistulas and I kept developing new ones, hence the ileo (my choice).
Although I am otherwise asymptomatic for Crohn's, the recurrent and multiplying fistulas led to that diagnosis. I have since been told by several doctors that this, while not normal, is not incredibly uncommon either.
I hope you all receive excellent treatment and things get better.
Gin
Hi Gin,
just curious why they would leave the pouch in there? Why not remove it?
I was diverted to a perm ileo too. 6 months later I had the j-pouch and rectal stump removed. The reason for 2 surgerues is I hoped my j-pouch would calm down and I could avoid the big surgery to remove it. I had this done at the Mayo Clinic in Rochester. The biopsy of my removed j-pouch showed pouchitis. Both my Mayo GI and surgeon were wonderful.
Well today we arrived at Mayo for the excision (removal) of his j-pouch and permanent ileostomy. Well wishes and prayers greatly appreciated!
That's where my removal surgery was done by Dr. Mathis. I hope all goes well. He is in good hands! Let me know if you have any questions about anything. I've been to 3 departments there over 4 years.
