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Reply to "Advice on pouchoscopy results?"

I had cuffitis and pouchitis together. Horridly. I was going about 40-50 times a day immediately from takedown. Was thrown to the side of the road by my surgeon and left undiagnosed for almost a month until I got back to a GI doc. Cuffitis seemed to tame down with daily canasa suppositories. Bleeding pretty much stopped and decreased going to about 20+times a day. Never bothered me doing rectal meds. If it helped me by reducing bleeding and frequency I just carried on. I had been on rectal meds for 6+ years with UC almost nonstop so it was no big deal. However same as with UC.. the rectal med stuff only dealt with the minor problems. For me the problem was that the pouchitis was far worse. In addition to frequency the pouchitis caused significant pain throughout my entire body - abdominal and joint, enormous fatique, fevers, nausea, malnutrition and more. Eventually - after I got to the real experts at CC- it was discovered my pouch was both too big and had too long of an efferent limb. Basically it had been built wrong and no kind of drugs were going to fix it. Simple as that. If all I had to do was use suppositories several times a day to have a better quality of life... I would have done my yearly scopes and been forever happy with my pouch. Instead, I had mine removed and I'm still recovering from that massive surgery and dealing with some new lifetime complications as a result.
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