Posted 4/24/2011 3:10 PM (GMT -7)
Welcome to the list. I haven't been in the same situation as you, but I have some of the pieces arranged differently. My diagnosis has flipped back and forth from UC and Crohn's colitis; it's still not determined now. For a long while it looked more like CD, and I just had a permanent ileo two months ago, based on that info, but then the biopsies of my colon looked more like UC.
I did go on remicade about four years ago -- I had been talking to my doctor about possibly taking 6 MP, and then I got into a horrible flare, went in the hospital, the IV steroids didn't help, and it was either remicade or surgery. It all happened very fast, and I too was terrified of remicade, but I opted for it, and I was one of the people who responded immediately and well to it. Originally it was supposed to be a bridge to get me onto 6MP, but I had some issues with my liver function on 6MP and could never get up to a high enough dose, plus the research changed and my doc thought it was better to be on both.
I did reasonable well on remicade for about a year, but it didn't always work, and my doc upped both the dose and the frequency, until I ended up in the hospital again about a year and a half after my first hospitalization. This time, go figure, the IV steroids worked, and I stopped both 6MP and remicade and transitioned to humira, which didn't really ever work, and then cimzia which also didn't work. I started getting all kinds of crazy complications, and I took flagyl and cipro for a skin issue, and that actually helped my flare for a while, but I couldn't stand the side effects of the flagyl. I just got worse and worse, with a scary ten day hospitalization including a 104.6 temp, and then I decided on the surgery. I really wanted to be off these scary drugs..... when I had the high temp I was scared I was going to die.... cimzia has fatal infections listed as a side effect, and I thought a high fever might be how that would look....
Not sure how much of this is or isn't relevant to you, but the drugs and surgery aren't exactly either or. Your doc says if you had surgery, you might still need the drugs.... but on the other hand, if you take the drugs, you may still need more surgery, like I did. If the remicade helps your small bowel symptoms, it will likely help your pouch symptoms too, as it suppresses a factor involved in all the inflammation. It does sound like big guns for "mild/moderate" inflammation, but I did meet many people at the infusion site who were doing great on remicade for years.
Also, it doesn't sound like your j pouch has ever worked that well for you, can see why you'd want to get rid of it. A permanent ileo is not that big a deal if you've been sick a long time, as lots of people on this list can attest.
It is a lot harder to heal from the surgery if you've been on a lot of pred. I was feeling the best I had in a few years before my surgery due to pred (and not working).... but I am healing more slowly. My docs were very clear that it was not a long term option.
My main questions would be 1) Is your doctor an IBD specialist at a teaching hospital and 2) Have you had a second opinion from such a specialist? Makes a huge difference....
You're in a hard situation..... hope things get better/clearer.
48 years old, female.
2004 dx indeterminate colitis. Back and forth between Crohn's and UC dx. Many drugs, minimal success.
2010-11 Crazy skin and eye complications, high fevers, bad flaring. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery