To make a very long story short: I have basically been flaring non-stop since July with only a let-up of the bleeding/diarrhea for a few days in a row, but never a total resolution of it. I have been using Canasa, Rowasa, etc. I cannot tolerate the Pred anymore as I get swollen ankles so bad I can't walk (among other delightful things). Anyway, I had a CT of the abdomen last Monday which my Dr says was "essentially normal." Yesterday I had an upper and lower endoscopy and he said things visually "looked good" but of course the biopsies are pending. My main problem on top of the nonstop diarrhea/bleeding is intolerable left-sided pain whenever I eat (a few minutes after) and the number of "accidents" I have every day. Today they scheduled me for a "carbohydrate intolerance test" next week. They will be testing me for fructose intolerance first and lactose intolerance the next week. I honestly don't think I have a lactose intolerance because sometimes when I am really sick all I eat is dairy (specifically ice cream, yogurt) and I actually get better in a couple of days. Anyone had any experience with these tests???
Dx UC 1979 at age 14 - (I know, some kind of record)
Was Mildly Chronic (flares every couple of years) until last 2 years now Chronically Acute
Can only get about a month symptom free between flares now
Asacol, Canasa, Rowasa, Cortifoam (on Sulfasalazine for 28 years previously also Pred)
GI Doc recently told me I have "lead pipe syndrome" which is advanced scarring of colon
No surgery - multiple colonoscopies reveal uc "from rectum to appendix"
My Best Friend is My Shih Tzu/My worst enemy is uc