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Ulcerative Colitis Personal Stories
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Robin's Story
My name is Robin Hugulet. I'm a 63 year old woman who was diagnosed with Ulcerative Colitis in 1996. At that time, I had a full blown flare up with up to 20 bouts of diarrhea, blood, pus, constant cramping and tenesmus (the constant urge to defecate) daily. I was put on 40 mg of Prednisone daily until the bleeding stopped. It finally stopped after 5-1/2 weeks. I stayed on the same dose for probably a month after the bleeding stopped before lowering the dosage until I was finally tapered off of it. I was also taking Sulfasalazine until the doctor decided it was making my skin turn yellow. He then changed me over to Asacol. He gave me a 90 day prescription, but didn't tell me I had to stay on it. As soon as I finished the prescription, I started bleeding again within a month. At that time I changed doctors. The new doctor again prescribed Prednisone and Asacol. The bleeding wasn't stopping as fast as he thought it should, so he upped my dose of Prednisone to 60 mg. I only weigh less than 120 pounds and 60 mg of Prednisone coursing through my veins was like short circuiting my nervous system. I hope I never have to go back on that horrible drug.
My question is this, "Is diarrhea without blood considered a flare up?" Every summer, starting in June, I get diarrhea that lasts for up to 3 months. I don't eat anything different during this time than during the rest of the year. Except for an occasional piece of fresh fruit, maybe once a week, I can't think of anything else I'm doing differently. But when I tell my doctor about my diarrhea episodes, he wants to put me back on Prednisone. He tells me it stops diarrhea, but it never stopped mine. Mine stops spontaneously after my summer episodes. I've tried Cholestyramine and Librax to slow down the diarrhea, but that only works when I have an occasional bout of diarrhea that lasts for a day or two. Nothing seems to help during the three month siege. I'm still on my daily dose of Asacol but they come whizzing out, sometimes 5 at a time. Some look like they've broken open while others look like they're still intact.
So, what am I supposed to do? Suffer through the diarrhea, until it stops and remain on my Asacol, and take the Cholestyramine and Librax as needed? Or do the Prednizone procedure again? I really don't think it works for diarrhea. I think it's basically an anti-inflammatory drug to stop bleeding (which I'm not).
Does anyone have any answers? I haven't been able to come up with any.
Robin
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