Tagged As: Infectious Colitis
Question:
Question: I was diagnosed with left sided UC 12/97. Managing it somewhat with Asacol/Rowasa until a month ago when it went wild. Just spent three weeks in hospital and was scoped again and told entire colon is now inflamed and they believed this to be infectious colitis in addition to the distal UC due to the fact that it never spreads that quick. However all stool/blood/urine tests for infections were negative. Was on Flagyl, Cipro, IV Hydrocortisone and now 50 mg of Pred. Still having symptoms though (cramping, diarrhea, etc. no blood though). Any thoughts on the infectious vs. UC? Really concerned because it seems like the steroids should have worked by now (more than three weeks) and next thing might be cyclosporine to suppress the immune system.
Answer:
I was cyclosporine for 4 mos. It worked pretty well, up to about 6 weeks ago, and I suddenly became allergic to it. I had to take it because prednisone will not work on its own, and 6mp and methatrixate would not work, if you can hold out longer, t see if the steroid is going to work because cyclosporine has a lot of side effects. I lost all energy, could not even think abot moving a muscle. A tremendous thickening of the stomach, jowls, depression, mouth sores, hair growth on face and arms, nausea, on and off diarrhea, and etc. If you can hang on a little longer maybe the steroid will kick in, I went through all that and 80mgs. Of prednisone and now have to have surgery, so I taxed my body for nothing. I hope I explained this o.k., if not please e-mail me and I will try to help. In 1994 I was diagnosed with the worst you can get. But, sometimes they don't diagnose you right the first time it is very hard for doctors to exactly know, the diagnosed me with that and then they thought I had Crohn's Disease. But I never could find out, I don't have any insurance anymore, But when I got inflamed it lasted for almost 2 years. If you have any comments or questions for me please E-Mail me at Vanhou...@aol.com Actually, I had left sided colitis spread to my entire colon in just three to five weeks. I was hospitalized and first put on high doses of IV Pred(60mg daily/three weeks) and when that didn't work they put me on IV Ciclosporine/Neoral for two weeks. Unfortunately, the colitis was out of control, even with all the pred and Neoral, so I ended up having a colostomy. I also taxed my body for nothing, and I wish I had had the colostomy a lot sooner, BEFORE I got the ciclosporine, because in my case, it made recovery last a helluva lot longer. I realize that this is not possible for you or anyone else to say, as everyone, like myself, will always try to avoid a colostomy at all costs, it really is a last resort. But had I known this before, I would not have taken this drug. I cannot believe how great life is again. I am up for the J-Pouch procedure, but I am putting it off because I'm enjoying life to the max again, without all the immunosuppressant drugs that made me feel incredibly sick, with side effects ranging from tongue sores/ulcers, burning mouth, hair loss, complete lack of energy, etc etc. This ileostomy is NOT a bad thing, considering what I've been through! I'm working full-time again, can go to the bars without going to the bathroom every five minutes, have my social life back, in short I *LIVE* again. Not the hospital/UC/Ciclosporine life but a great life!! Be careful with that stuff! But then again, in some patients it does work. Sorry for this advice, it won't be of much help I realize, but I just wanted to let you know that the 'last resort' colostomy is not a bad thing, really (I am 28 by the way and I feel like I am 22 again after surgery, not like 68 with colitis/pred/ciclosporine)
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