For those who did the Jpouch surgery, and then got Chron's or Chron's of the pouch. What are the symptoms? How is it treated? Just trying to get a understanding of how this works as I am pretty new to all of it. As always, greatly appreciate everyone's responses.
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I have had my pouch for about 15 years and always had excessive diarrhea. I developed a recto-vaginal fistula about 4 years ago that cause infections in my lady parts but no one could ever find it on scans! I had an abscess in my Fallopian tube in May from the fistula I believe and then ended up in hospital in June with dehydration. Hadn't been feeling well for about a week, nausea, no appetite and more watery diarrhea than usual. Ended up being sent to city hospital from my small town hospital due to hypovelmic shock from dehydration and what we thought was an obstruction. Green liquid was pouring out of my bottom. Had MRI, sigmoid, and Ct-scan and they found inflammation in pouch and small intestine. Saw a Gi just over a week ago and am now on entercort, imuran, flagyl and a drug similar to cipro. Will be scoped again on August 20th to check on inflammation. Sorry this is so long!
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I was dx'd w/UC in '82, had a jpouch made in '93. Never did as well as my surgeon expected, in that I had more frequent BMs than "typical" - maybe 15/day, give or take, and, as time went on, had more issues: pouchitis, cuffitis, rectal cramps, fevers, headaches, night sweats, etc. (flu-like). My original surgeon decided I had Crohn's in my jpouch, however - this was just a "visual" dx. He was not aggressive with his treatment and things kept deteriorating.
2-1/2 yrs. ago, I developed a fistula (3), and went to the Cleveland Clinic. I was actually there this week for a scope, and as my cuff is still very inflamed, the ATZ is narrowed (which causes problems with elimination), and with the fistula, the surgeon up there believes I have Crohn's colitis (biopsies pending). Seems the Crohn's is limited to the cuff area, or the remaining rectal area.
Current treatment is canasa suppositories which treat cuffitis - or I assume the Crohn's - at the source. The surgeon (Hull) said there are other alternatives: biologics, more surgery, etc., but I'm sticking with the canasa for the time being, as the area affected by the "crohn's" is limited, the Canasa is effective and I have not experienced side effects with it. Am doing well with the canasa and will include self dilations which were recommended.
There have been ups and downs with all this, but I think the key for you is to have a super surgeon with a LOT of experience with constructing pouches, and - just as important - someone lined up for you to see afterwards who knows how to effectively treat any jpouch issues that may arise.
Please feel free to PM me if you'd like to discuss anything in detail. Best wishes.
2-1/2 yrs. ago, I developed a fistula (3), and went to the Cleveland Clinic. I was actually there this week for a scope, and as my cuff is still very inflamed, the ATZ is narrowed (which causes problems with elimination), and with the fistula, the surgeon up there believes I have Crohn's colitis (biopsies pending). Seems the Crohn's is limited to the cuff area, or the remaining rectal area.
Current treatment is canasa suppositories which treat cuffitis - or I assume the Crohn's - at the source. The surgeon (Hull) said there are other alternatives: biologics, more surgery, etc., but I'm sticking with the canasa for the time being, as the area affected by the "crohn's" is limited, the Canasa is effective and I have not experienced side effects with it. Am doing well with the canasa and will include self dilations which were recommended.
There have been ups and downs with all this, but I think the key for you is to have a super surgeon with a LOT of experience with constructing pouches, and - just as important - someone lined up for you to see afterwards who knows how to effectively treat any jpouch issues that may arise.
Please feel free to PM me if you'd like to discuss anything in detail. Best wishes.
Thanks guys. n/a - if the cuffitis is kept at bay with the suppositories, will you still need biologics? What kind of problems does the fistula cause?
my son had the take down in April. In July he had a video capsule showing crohns in his small intestine.Last year he had the capsule and the small bowle was completly normal. Since takedown he has had pouchitis, cuffitis and more and more nausea making it hard to eat. He is 6 weeks on TPN thru a PICC line. He will probably start biologics next week.
Future_Jpouch_Patient: I don't know whether biologics are in my future or not. None of my drs. have ever really encouraged me to get on them, as the cuffitis is now being controlled well enough with the Canasa for the time being.
My fistula is probably a result of the constant, severe inflammation in the ATZ/cuff - caused by the disease. The fistula can cause problems if it "backs up" and creates an abscess (super-ouch), or start branching off, creating more fistulas. With a seton, these things are much less likely to occur - a very good thing. The trade-off is the seton - while having it is not really something I physically feel or am bothered by, it is just always "there". Many fistulas - depending on their location - are very difficult to treat.
My fistula is probably a result of the constant, severe inflammation in the ATZ/cuff - caused by the disease. The fistula can cause problems if it "backs up" and creates an abscess (super-ouch), or start branching off, creating more fistulas. With a seton, these things are much less likely to occur - a very good thing. The trade-off is the seton - while having it is not really something I physically feel or am bothered by, it is just always "there". Many fistulas - depending on their location - are very difficult to treat.