This is my first post on this forum, so bear with me if it gets long.
My dh was dx'ed with UC in 2006. His initial flare was horrible, but after a few days in the hospital on IV steroids he was on the mend. He was initially on 60mg of pred and 12 Asacol/day. He was able to taper off both of those and has been happily maintaining just by taking Imuran. He's had a couple of very minor flare ups that consisted of a bit of bleeding and pain, but was able to stay on top of it by using steroid enemas for a few days.
A couple of weeks ago, he ended up with a nasty lower respiratory infection. He's now experiencing the worst flare he's had since his dx. It feels a bit deja vu to us because his initial flare with UC also followed a respiratory illness. It seems his body mounts too much of an immune response to fight the infection. No fun. He's in tremendous pain and has spent hours in the bathroom today.
Although his initial dx was 2 years ago, I feel like we're really "new" to this whole disease. I think we both were in denial and tried to play it off as a fluke. Dh even toyed with the idea of going off meds altogether to see what would happen. It's clear now that it's not going to be a "one off". We need to start learning more and trying to figure out the best way for him to manage his symptoms and develop a plan for flares. I'm very annoyed because his dr seems slow to respond to his concerns. I called right away this morning to ask for a prescription. The triage nurse told me to go thru the pharmacy and they'd fax a request to the dr. How are we supposed to even know what to request? Doesn't that seem a bit backwards?? Despite this being the "easiest way" to do it, they didn't get the prescription filled by the end of the day. (I requested Asacol). It's very frustrating to know what he needs, but not be able to give it to him. I plan on calling again in the AM to see if he should start pred, too. He doesn't seem to be bothered by any side effects from the steroids, although I may have to move to another state when he's coming off of them!
So, I guess my big question is how do you know what to do when you have a flare?