I was diagnosed in November 2010, after having gradually increasing symptoms for over 8 months. I had a totally normal scope a year earlier and then this. The symptoms got pretty dramatic, with 30 to 35 trips to the bathroom and lots of bleeding and nausea. I thought it was IBS because I was under a lot of stress…money problems, kid concerns, trying to finish a PhD to boot and I work in a prison! My gastroenterologist was surprised at the findings, clearly ulcerative proctitis. I am now on Asacol and Canasa daily. They keep the symptoms down, but not gone, and Proctofoam when I flare.
My story is pretty much the same as most I’ve read. The symptoms came out of the blue, and gradually built up. I thought it was stress and IBS or diet-related. I was trying to finish up a dissertation and PhD, and between it and an internship and full time job, and my stress-o-meter was red-lined for months! To top that off, I work in a prison and we have ONE bathroom between 30 staff members. Although I was working at night, I owned that bathroom at work. The officers monitor the work areas by camera and I can only imagine what they thought about 25 trips to a bathroom per shift if they watched me….in a prison, that is suspicious behavior and I lived in fear that they would think I was using drugs or drinking on the job or smoking in the bathroom. The bathroom situation alone would strike fear into the heart of anyone with UC, but add to it that when I move from one part of the institution to another, I am stuck waiting for doors to be ope ned for up to 15 minutes at a time. There was often one officer in a remote booth managing tons of other doors and he stood between me and the nearest bathroom…I had many accidents. I covered fairly well, but it was just awful. I started planning my life around where the next bathroom was, wearing adult diapers just to make it through the workday. Since I had just had a normal scope a year earlier, my GP didn’t think it was UC and we treated IBS and lactose intolerance. She finally insisted that I go in for another scope and the UC diagnosis was a relief. Right now, the running to the bathroom part is under control more or less, but I am having a very hard time with the joint pain: lower back, knees, shoulders, hips! They keep me awake at night. Absolutely any help and ideas for that would be welcome. I feel like I have the flu coming on all the time! I haven’t identified foods that cause a flare, but plan to buy “the book” with the SCD info. I had to laugh at the comments on Asacol…AKA horse pills. What is it about those pills? They’re like swallowing rocks and they are so expensive! I had to laugh at the person who posted that he calls them “Crapacol”! Thanks so much for giving me something to laugh about!
Asacol versus the non timed release version. Does anyone have experience with these? The non timed release ones are a lot cheaper. Any ideas re: joint pain treatments besides addictive pain killers, which I won’t take. Any experience with chiropractic? Specific foods that make this worse?
Submitted by “UCKatie”