Crohn's Disease & Ulcerative Colitis Support Group
Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...
I was diagnosed with UC almost 17 years ago...yikes so long ago. The very first flare was my worst ever.
These days the flares are less intense not too disruptive. However, still there and I never really feel as if I'm in remission.
My GI switched me from Colazal to Apriso a couple of months ago - can't say I've noticed a difference.
Usually I have resorted to prednisone to control any nasty flares however my GI does not want to rely on pred any longer.
I had my colonoscopy this past Friday - my GI is concerned that my UC is still active and has suggested since we've tried everything else that my remaining options are Remicade or surgery.
I really did not want to go with biologics. Wondered if it has helped others? side effects? what's it like going for the infusion? any info you can share would be great.
These days the flares are less intense not too disruptive. However, still there and I never really feel as if I'm in remission.
My GI switched me from Colazal to Apriso a couple of months ago - can't say I've noticed a difference.
Usually I have resorted to prednisone to control any nasty flares however my GI does not want to rely on pred any longer.
I had my colonoscopy this past Friday - my GI is concerned that my UC is still active and has suggested since we've tried everything else that my remaining options are Remicade or surgery.
I really did not want to go with biologics. Wondered if it has helped others? side effects? what's it like going for the infusion? any info you can share would be great.
http://www.dailystrength.org/c/Crohns_Disease_Ulcerative_Colitis/forum/13966298-first-remicade-infusion-finished
I'm going in for my third tomorrow. I definitely noticed an improvement the day after the first infusion (like, one formed BM per day, very little bleeding). My second infusion was two weeks later. It's been four weeks since that one. The last two weeks I've had alot more bleeding (turn the toilet red level). I've been tapering down on steroids and am basically done with those, so I'm actually looking forward to having my infusion tomorrow to see if it gets rid of the final symptoms.
I was worried about my first infusion but it really wasn't bad.
The day after my first two infusions, I did have alot of diarrhea (like, empty out the colon level) but after that things were good. Four/Five days after my second infusion I might have caught a stomach flu (at least I hope it was stomach flu and not a reaction to the Remicade). Massive headache, threw up 14 times in 16 hours. I finally went to the hospital for IV fluids and IV anti-nausea. Based on my increased wbc count, my GI thinks I had the flu. I'm waiting to hold out judgement about the reaction until after this next infusion. Even if that's my reaction every time, it might be worth it to live with very minor UC symptoms the rest of the time.
All in all, the experience is much less scary than I thought it would. I've talked to several people in the infusion room who have been on this treatment for years and love it for their symptom control. I can't speak to the long term effects it will have as I've only been on it for six weeks.