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I am about 7 months post take down. About 10 weeks out I started having spells of spasms in the pouch area, cramping and associated uncontrollable BMs, increased frequency. This happened always in late afternoon and evening, Lomotil helped some. I was scoped and there was some inflammation but the pouch looked pretty good. The biopsies were not definitive for pouchitis but possible. 10 day course of Cipro helped some, it did end the spasms after ending the Cipro for about two weeks there was general improvement and then things went down hill. I was also on VSL#3. A course Flagyl was then tried. This worked better I had several really good days and then general improvement for a few weeks followed by deterioration. Another course of Flagyl same results. As things began to deteriorate I decided to self medicate and try some of my left over UC meds. I went on Sulfazalazine. I was on this drug for most of the 25 years I had UC. The results of about 4 weeks so far have been at least as good as the Flagyl and in the last week things seem to be better then I have experienced since take down. I ran out of the left over drug and had my surgeon provide a new script. The dose I used was 2 500mg. tabs 3 times a day. This is the amount used in the only study I could find. I have since, after about 3 weeks, dropped this to 2 500Mg. tabs twice a day. I will eventually try to go off the drug and see what happens. http://www.researchgate.net/pu...t_of_acute_pouchitis I can’t say for sure all the improvement is from the Sulfasalazine as I have of late also been using Florstor probiotic and digestive enzymes. I had to drop the VSL#3 as I had unbearable gas from it, which is interesting, as I didn’t have gas when I took it when I had a colon. I am posting, as it seems many are struggling to find a drug that works but few have tried or are using this old standard. Some people do have side effects from the sulfa but it is generally a very safe drug and may be worth a try. | |||
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This has worked for me too. Just posted about it. I'm 7 years since takedown. Pouchitis with little remission for 6 years. Surgeon prescribed antibiotics. Almost all made me sick and ones that didn't --didn't work. So went back to my GI dr. mostly for convenience and because wasn't getting anywhere with antibiotics anyway. He started with the antibiotics too & still no luck. After reading that some people had success with Rowasa enemas (my med from UC days), he prescribed it and it worked. I have been in remission for 6 months. Longest by a long shot since pouch surgery 7 years ago. I'm certainly not a dr., but it makes sense that something that worked for UC could work for pouchitis and rowasa doesn't have the bad long term side effects. I am thrilled. Hope no one comes along and busts my bubble by telling me rowasa is going to kill me. LOL | ||||
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Remission for a year wtih canassa "True stlye is about living passionately" UC 1996 -5 asa, predisone, 6 mp -Dec 26, 2000, Emergency j-pouch surgery -Multiple complications, J-pouch redo- July 3, 2001. -Take down-Jan 3, 2002 -Chronic pouchitis: cipro, pentassa, xifican, cortifoam, canassa, leviguin, lexapro -Gall bladder out-Oct 1997 -April 2010 bad pouchitis flare-remicade (only 2 doses) -Aug 2010-adhesion surgery -Doing great! only canassa!for pouchitis and lot's of suppliments! Oct 2011-so much for adhesion surgery! | ||||
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