Posted 9/6/2010 8:02 AM (GMT -5)
Hi all,
I am almost 23 years old and was diagnosed with UC soon after turning 21. I had had mild bleeding for over a year prior to this but ignored it until I started developing additional symptoms. Originally, I was put on Cortifoam, which worked wonders with my first flare-up since my colitis was not very extensive at that time. It didn't get rid of the symptoms completely until about March of that year, and then I was symptom-free for over a year, which was great. I even started to imagine that maybe it was a one-time thing...silly me! Anyway, I started to have another flare this past spring, and in May I reluctantly called my GI up to tell her it was back. We tried the same regimen as before, but this time the Cortifoam only reduced my symptoms instead of eliminating them. A sigmoidoscopy revealed that the UC had spread further into my colon (I'm blanking on the precise # of inches). This time I was put on Hydrocortisone Enemas and Asacol 400 mg 3x a day. Between these two meds, my symptoms literally stopped completely the day I started taking them. Since May, I have been trying to wean myself off the hydrocortisone per my GI's recommendation. After a steady month of everyday use, I dropped to once every-other-day for 2 weeks, then once every 3 days for 2 weeks, etc. Now I am kind of on an "as-needed" basis until I run out of enemas. I tried to stop completely about 2 and a half weeks ago, and last night I noticed some bleeding for the first time since May. I was so frustrated I cried myself to sleep, as I was really hoping that the Asacol alone would be my secret. It really does seem to help, but I can always tell the UC is lurking. Anyway, I used one of my extra enemas last night and things are back to normal today. The point of this whole post is that I was wondering if any of you guys have had a regimen where you use a steroid enema on an as-needed basis (my basis seems to be once every 2 weeks, but if symptoms start up again in spite of this, obviously I am going to need something new)? From what I've read, it seems that HC enemas are not intended for long-term use, but does this still apply if I were to use them only 2-3 times per month? At some point I will have to run it by my GI, as I only have 7 enemas left before I need a prescription refill, but I was curious if anyone had similar experiences. I am just really frightened of going the oral steroid route, and my GI had hinted that that was next if this routine doesn't work - so I'm desperate to make it work!
Thanks so much for reading :)