I'm not having luck with Remicade either. I cannot go up on the prednisone and wait for the Remicade to possibly work b/c my side effects involve staph infections and very painful abscesses. I've been in a constant flare since June 2008 and never have had remission in the 2 years I've had active UC.
I know the surgery sounds scary. My husband I always joked about
the 'cure' for this disease and that it would be 'someday'...little did we know that day is today. Well, within the next few weeks at least. Because this flare has been going on since June I'm having a very difficult time masking my struggles from my family. They've caught on to my exhaustion and I'm having a difficult time hiding the pain. So, they're kind of wigging out right now...which makes me feel bad b/c I've been much worse than what I am now, and they're making a big deal out nothing really...well, for me it's nothing b/c like I said it's been a whole hell of a lot worse.
Anyway, we are having the surgery b/c I want to get back to my life. I'm tired of the exhaustion, I'm tired of the staph infections and constant
open wound care, and I'm so tired of my son, husband and family being affected by my struggles and my issues. It's not fair for them, and it's not fair for me. My GI suggested the surgery a little over a month ago, and at first I felt it was very premature and unrealistic. Then I thought about
it, and my husband and I did some research, weighed our options, spoke with our family and decided to go with it.
I am so sorry you're struggling with the Remicade. I always got my hopes up with each infusion, and either immediately after or soon after my bubble was broken b/c they did not work. *sigh*
I do hope you find the right combination and treatments for you. Many people on this forum find luck with nutrition and diet changes...many people go to great lengths to retain or gain remission before resulting to surgery. I'm sure you'll find something that works well for you and your family!!!
: ) Robin
Dx-May 2007 Asacol-2400mg bid Prednisone-20mg Remicade-5 Tx
Life has never been so sweet! I appreciate the small things in life...the little joys that occur every second of every day. Though we struggle and have crazy complications, nothing can over ride our love and happiness.