I have a question for you folks. How severe are your flares? I see several of you stating that you've never reached remission, or that you're going on 2 years of a flare, etc, and I wonder how severe the flare is. My husband has had 3 flares total (2 where they thought he just had ulcerative proctitis, and the last that you all know about that landed him in the hospital with a c-diff and crohn's diagnosis). All 3 flares were bad in terms of symptoms - he was not really functional. He couldn't sleep at night - he'd basically wake up and have to run to the toilet from anywhere from 1-3 am to about 7 am. And then every time he eats, he'd be running to the toilet. Plus he had awful awful stomach cramps that were entirely debilitating almost every 15 minutes, and basically could barely swallow water.
So, one of my fears, is another flare up. He's kind of been teetering right now - c-diff, IBS, crohn's, I don't know - but he's not in the hole . . . yet. He just got his remicade infusion today, so I'm hoping he'll pick up soon, and return to normal. Were his flare ups so severe because they didn't know he had crohn's, and so he wasn't really medicated?
He's on Lialda, Canasa and Remicade - with all these medications, if he flares up, is it likely to be less severe, and more manageable? What are your experiences?
Some folks say they take no meds, and manage flare ups with just diet modifications, and maintain for years with no meds. I can't even imagine this being possible for my husband - with the dataset of the 3 flares, I can't imagine him surviving with just diet modifications and supplements. Or is it that the diet and supplements keep the flares from being really severe?
Between flare ups, he leads a completely normal life - eats anything, and has no problems. Do the severity of symptoms during his flare ups mean that he's got a severe form of this disease? Will the flare ups be less severe, and more manageable now that he's on maintenance medications? What are your experiences? I know no 2 people are the same, but I would still like to know, just to prepare myself.
Thanks so much for your input.
Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life