Posted 4/3/2008 6:37 PM (GMT -7)
Hello, I am a 41yr old woman who was diagnosed with UC in late 2001. (5'4", 125-130#) I was able to continue working for almost 2yrs after diagnosis, but my symptoms became debilitating and I would have flare-ups that lasted between 45-60 days. According to my current Doctor, I had not experienced any proper remission since diagnosis. During the good periods, I have as few as 4-8 bowel movements (BMs) a day. On my worst, it has been up to 28 times in a 24hr period. On average, I run to the bathroom between 14-20 times a day. Diarrhea like water. Blood. Mucus. Cramps. Urgency/Incontinence. Accidents when I don't make it in time.
I hate my bathroom and the amount of time I must spend in it.
*I keep a BM chart where I mark down every bathroom trip in 24hr periods, AM and PM, that requires me to have to wipe my bottom. I write the time of a BM, use "+" marks to denote 'more' of a BM (though not enough quantity to be an actual BM, but still requires attention) and M/m for mucus and B/b for bleeding. "A" indicates an accident that required cleaning of either me or clothing. I use underlines, dashes and dots to denote diarrhea, loose and firm-ish stools.
I have been keeping this chart since 3mo after my diagnosis so I have an accurate picture of my bowel health and can accurately report my sympms to my Dr and track patterns to plan daily outtings.
I have tried colazal, asacol and balsalazide disodium. Enemas; rowasa and a cortisone one. Everything has proven to be largely ineffective in controlling my symptoms. I was being seen by the Doctor that founded the Georgia Colitis Foundation and he referred me to a specialist at Emory Clinic in the summer of 2005 when I weighed 111#. This new Dr is the head of her department and she started an aggressive approach to my treatment.
We first tried 60mg of prednisone, which worked wonderfully! ...but I gained 50# in a short amount of time and as they were stepped down, by 5mg at a time, my symptoms would come back at the lower (<10mg) doses. She would bump me back up to high doses (50, 40, 30, 20mgs) and work our way back down. Symptoms always came back and responded less dramatically with every bump in the steroids. She tried steroids with 6MP (mercaptopurine) and I appeared to do well. She doubled my dose of 6MP and I had fabulous results. It was like I was normal again! But...as the steroids decreased, symptoms returned, nausea was present and it resulted in me crashing into a bout of acute jaundice. I didn't think anyone could feel that bad and still live.
Her next step was to put me on Remicade, which I've been on for just over a year, with no appreciable results at all. I have been off of steroids since December of '07. We tried entecort with no changes so we halted that, too. I am currently dealing with severe nausea every afternoon/evening and was holding steady at just over 130#, but have now dropped down to 126#, and fear I may lose more. I have a call in to her office requesting to halt the 6MP.
After having a terrible experience with having a BM accident while driving to my last (Feb) remicade appointment, I made the decision to go forward with surgery to remove my colon. Hey, if it isn't going to work for me I'm gonna toss it out! Surgery is set for May 6th.
I have the support of my husband, family and good friends. Arrangements are made to care for me (house & hubby) in addition to farming my horse out until I can care for her myself at home.
I am frightened, because this is a major, irreversible, surgery. However, I feel very confident that I've made the correct choice to take control of my health away from my unreliable colon and finally feel like I am in charge of my future. I've PM'd with a few people who have had the surgery, and the recurring theme among them all, while they are now enjoying a normal life...is they wish they had done the surgery sooner.
I want to be able to go out with my husband at the drop of a hat.
I want to ride my horse away from home.
I want to drive my sportscar and not catalog every bathroom along the route and count the miles in between bathrooms.
I am looking forward to being able to do all these things I've been denied for the past six years.
I am pleased to have found this site, I only wish perhaps I had found it sooner in my illness.