Posted 8/12/2009 10:28 PM (GMT -7)
I found this site late one night while looking for info on drugs and probiotics.
I was diagnosed in 1999 and have experienced many of the same up's and downs as many of you here. Unfortunately for me, my disease pattern is mostly active, with the occasional short period of remission, followed my many months of an active flare. At this point, I am happy that I haven't been hospitalized in almost 2 years.
I am currently taking Prednisone, Asacol, and 6MP. It seems that my flares only go away after a long period of Pred, often taking months at very high doses. As much as I hate the side effects, including insomnia, appetite changes to the extreme, altered tasting and smelling, and overall joint pain, I love that it can bring on remission for me.
I know that a higher dose of 6MP would help, but the last time I was maxed out, my blood chemistry crashed, and I was hospitalized and quarantined for 2 weeks. I had 3 blood transfusions, and ended up having surgery for a perianal abscess.
I am currently trying to decide whether to take the Remicade route, or just get the j-pouch done. I current GI has been very good to date, but hasn't really provided me much input either way. When I was hospitalized for the 2 weeks, the GI specialist I was admitted under suggested that most people go for surgery when they have had enough. I am curious to know what others have experienced with the surgery. My biggest fear is that there will be complications that will leave me with a bag for the rest of my life. Being a fairly active 34 year old with 3 kids, this would be a devastating outcome. UC has already taken away my 15 year medical career, and I don't want it to take away anything else.