Posted 9/22/2012 1:19 PM (GMT -5)
I've been flaring on/off for almost 2 years(pancolitis). Few months will go by where I feel I'm in remission, then I have symptoms for a month or so (broken stool 2-3 trips a day, lots of sounds/rumbles in my gut). A few months ago my gi put me on pred after my cscope showed 90% of my colon inflamed. I was fine the whole time then a couple weeks after I tapered, symptoms came back. Still having 2-3 trips a day, really broken stool or sometimes it's just all liquid stool(powdery looking at the bottom). Overall I have only seen blood a hand full of times in the past 5 months though. Not too much urgency either. Been on 125mg 6mp, asacolhd 2 @ 3x a day & mesalamine enemas nightly when my symptoms are strong. I stopped vsl3ds a few months ago because I couldn't afford it, didn't really notice much change taking it & not taking it though. I know I could be a lot more strict with my diet but over all I will still flare even when my diet is very strict.
I've been living with family since feb. this year and it has been a huge help but I want to move to los angeles in the near future but no family there. I'm so afraid of dealing with flares & if it got much worse while living there alone pretty much. I know remicade is pretty much the last straw for our condition so I've been holding out on it for as long as possible. Just don't know if I'm ready for it or not. If i'm flaring this much while being on the meds i'm on, should I up it to remicade? I recently jumped back on 30mg pred yesterday to get things under control but I really don't want to be on pred anymore. My gi says I shouldn't look at prednisone in a bad way because it does help me, but I always get painful side effects when I taper off. Last time my entire left side up to my shoulder started hurting & got so bad I couldn't drive my car for a week. My reg doctor took xrays an there was nothing showing up. I told him it was from the prednisone but he didn't think so, but it literally started happening the day after my taper. Had the pain there for almost 2 weeks then it was gone. Hope everyone is doing good. Stay strong!