How does this happen?

Also, my first flare was mild, and only located in my TI. I stupidly assumed that meant I had a mild case of it and it would stay that way. Now it's throughout my whole colon and severe. Are flares really that different time to time? Could the next one be mild again? Or do they just get progressively worse?

The same thing happened to me. Mild proctitis turned into pancolitis. I also flared up really badly nearly overnight. Very frustrating to be healthy one day and ill the next. I am sorry you're feeling down. On the positive side, I am on an immunosupressent and I haven't had any infections so far, knock on wood.

Blueglass is absolutely correct. The majority of my time on Remicade I have been fine but there have some infections. Even before I was diagnosed with Crohn's disease I had infections, sinus infections, and colds. That is part of life but you just have to be a little smarter when you are on the medication about washing your hands and not going around sick people. Remember, there is a reason why your doctor felt it was worth any risks to put your on that medication.

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.

PV

He did tell me to stay on the Apriso through this. Thanks for all the encouragement. Maybe I'll be one of the lucky ones that never get infections.

Chrisnsteph, so sorry you're going through this!

I don't have any answers about the randomness of flares. My really bad times I could link to hormones (post-partum flares) and stress (house fire!). The rest of the time I think I've just had chronic mild disease, no real remission (except while pregnant). The symptoms seem to vary though - for a while I'll have a lot of rectal symptoms, then they'll go away and I'll have months of bloating/constipation/nausea. I do feel that a menstrual cycle makes all of this so much more complicated - mine appear to be ending and I will be glad not to have that factor to consider.

{{{hugs}}}

I can't speak to the biologics and getting sick more often. But as to the flare happening overnight. Most likely you had microscopic activity and the Crohn's was left to do its little black magic without anyone knowing. Many of us have spent years either un medicated or under medicated, but we felt fine, with NO symptoms whatsoever. Then one day, out of the clear blue sky, Crohn's rears its ugly head. It seems like it came out of nowhere when in fact it has been lurking inside you doing damage and finally reached its boiling point.

This is why so many of us advocate for maintenance medication at all times. We have been hit hard when our "remission" ended suddenly. If your maintenance medication isn't strong enough you can have the same outcome. Hopefully you will be able to stop the damage and get things under control quickly with some new medication. For me it took 3 resections and 10 years to undue the damage.

very good posts