This site has saved my sanity on MANY occasions.... I'm glad you found it.
You might have already read my posting under the recent fistula/pregnancy post, but just in case:
I had a peri-anal fistula as well, that abscessed almost 360 degrees around my colon. I know the "icky" stuff you're talking about
all too well. I spent more money on bandages to keep my panties clean than on anything else! My body did not like Flagyl, Methotrexate, Prednisone, Purinethol, Imuran, or Asacol. And those are just the ones that I can remember. The only relief I found was in a serious Remicade routine. I went every 4 weeks for a year. I took prednisone for the first month, but it made me feel psycho, so I weened off of that at about
the 5 week mark. The drainage slowed after the first treatment of Remicade, slowed even more after the second, and completely stopped after the third treatment. The drains were left in just to be sure, but pretty soon, my body was healing from the inside out and pushing the stupid little tubes out so far that the stitches were pulling at my skin! I've never been so happy about
such a stupid pain before in my life - I just knew it meant it was time for them to GO!
I know that Remicade is not a miracle cure for everyone. But, having said that - it sure made a difference in MY life. And I think it's because we were so aggressive with it from the get go. I've learned, in the last few years, that doctors tend to have one of two approaches to crohns.
1. Docs start with the "little stuff"... increasing it here and there if it isn't helping... maybe throwing in some steroids...etc.etc.
2. Docs throw the most wicked powerful stuff at it to get it under control, and get the patient back to living a LIFE, and then work backwards. Like "well, you're doing well, maybe we can stretch the Remicade to every 6 weeks, then 8 weeks... "
I haven't had any trouble since I started the Remi (knock on wood), and I'm probably going to use it at least until after I have a child or two...assuming my body gives its permission. We'll see, but so far, so good.
26f, dx'd CD July '05 after 6 fistula/abscess surgeries
Remicade only, every 16 weeks.
Digestive enzymes, and probiotics.
Doing pretty darn good, all things considered.
"Our greatest fear is not that we are inadequate, but that we are powerful beyond measure."