Posted 1/12/2011 6:53 PM (GMT -6)
Hi Stephanie. Frustrating isn't it? My hubby and I were bushwhacked with Crohn's in 2008. He had one case of ulcerative proctitis that was mild and subsided with a short 4 week course of steroids, and he had been stable on just Canasa suppositories every other night for years. Then, bam, we're in the hospital righting both C-diff and Crohn's, narrowly escaped surgery, and took months to recover from the damage done (weight loss, bone loss, foot drop). It was very extreme, and extremely traumatizing. He came back home from the hospital on 80 mgs of pred, remicade, lialda and canasa.
It took me years (and I still struggle with it) accepting how volatile and unpredictable this disease is. I firmly believe that my husband's flare up and subsequent hospitalization could have been milder had they put him on stronger meds to begin with. I think it would have kept the intensity of the flare up milder and more manageable.
I strongly believe that you need to be on good prevention to keep flares at bay and manageable. And I think for Crohn's that means immune modulators, not just 5-ASAs. I know some people like Gail are maintained on 5-ASA and some short bursts of steroids, but if you find that 5-ASAs are not effectively minimizing the magnitude of the flare, I think you should embrace stronger meds.
As far as infections go, I think awareness is necessary. You should be aware and vigilant, and take action at the first sign of infection. Also, before you start remicade or cimzia, check to see if you need to take the chicken pox vaccine (if you don't show a high titer in the blood). My husband hasn't had any problems with infections on Remicade. He has germx in his pocket, and washes his hands frequently, and tells people who are sick to keep their distance from him since he's immunosuppressed. If he did get an infection, I'm sure we'd be seeing the doc right away. In fact, since he was unable to get the flu vaccine (for other reasons), we have Tamiflu at home just in case he gets the flu. So just be vigilant and you should be ok.
I hope you start feeling better soon.