I've been reading this forum for a while and I've started to notice a trend.
Alot of the people who were diagnosed at young ages seem to develop fistulizing Crohn's, whereas the newly diagnosed tend to have the majority of their problems in their terminal ileum. When you're diagnosed young, I think you start to just deal with it on your own and don't feel the need to go to the doctor all the time. When you're used to being sick or slightly sick, you don't treat your illness as that big of a deal and let things go too far.
I'm in pretty much the same boat as you. I always believed I was in remission until august 2008 with my first abscess. My second abscess in september 2009 caught me without insurance and an expensive trip to the ER. I got a new job in October as well and the insurance didn't kick in until early December. I got a new GI and she ordered all these tests, colonscopy, small bowel FT, and a fistulogram. Everything was fine except a sick rectum and a skin to rectum fistula. She gave me Flagyl to start, but she wanted me on Remicade ASAP. I didn't want it at all, but she kept at it and eventually I was sold on the idea because according to her, Remicade is the only thing that combats fistulas.
The HMO denied my Remicade. My GI is pissed beyond belief. And now I have to go on Lialda even though no one thinks it will work.
I think that if you have more than one fistula and your HMO allows you to take Remicade, do it! Because the last thing you ever want to experience is a surgeon cutting up your vag or your butt. Once they start messing around down there...Your disease will just move somewhere else and you'll be scarred and possibly incontinent.
With your history of taking Pred and Asacol being problematic, they are more likely to give you your Remicade. Humira is out because my GI said it doesn't combat fistulas.
Good luck and let me know how it goes!
Diagnosed with typical Crohn's at 16.
Got lucky with Asacol for a year, then even luckier with ten years of relative remission.
Now abscesses and fistulas are having an "atypical" Crohn's party around my junk.
My HMO refused the Remicade and now I could be going on Lialda or sulfa? blah