In terrible pain due to Crohn's Disease flare

[carey]

almost 2 weeks ago i got my first remicade infusion after being off it for a yr due to insurance crap, also on 60mg pred a day. i have had a constant flare. i havent known a day without pain, but it seems to be getting worse. if i dont eat im in pain, when i do eat im in more pain, i have tried every combination of food that i can think of, even the brat diet hurts me. is there anything i can do? im getting desperate. been taking percocet for the pain, seriously dont want to take them anymore, but what the hell am i supposed to do. damned if i do, damned if i dont!

 

[Dexky]

Call your GI! Maybe you have built up anti-bodies for the remi during the layoff. It may need to be upped or you may have to try something else. Good luck!!

 

[Welsh-bird]

60mg of pred is high, and should be making an impact- I would also say, contact your GI, and if the pain becomes too much and thing's deteriorate then it's a trip to ER where they may be able to get the pain under control. Hope you'll be feeling better soon.

 

[carey]

im really hoping the remicade starts working soon. the first time i was on it, it took 2 months before i got better. currently banned from 2 hospitols because of all my er trips in the last yr. seeing a pcp today, really hoping he'll take my case so i dont have to go to another er.

 

[carey]

another quick question: every time i go to the er and they check my blood or do another dreaded ct scan, they tell me im normal for someone in my condition, but the pain gets so intense that i can barely walk. could there be something else going on that their just not catching? should i ask my gi to do another colonoscopy? is it common for a flare up to last for more than a yr? it just doesnt make sense to be in this much pain if im "normal"

 

[Crohn's 35]

Hi there, in my opinion CTscans don't always show the disease, and too many ct scans can cause cancer down the road. As you suggested, I would have a colonoscopy, less invasive and they can see better, and take biopsies. This disease can be tricky to spot at the exact moment. Pred can masks the disease and therefore not seen. Hang in there.