New here, flared up and freaking out…

Hi,

 

I'm new here and decided to sign up because the UC is finally freaking me out. I've had it for 2.5 years and had 3 hospital stays during that time but somehow it's only starting to really get to me now…

 

I've tried Rafassal, Pentasa, Budeson, Asacol, Prednisone and recently started Imuran… out of all those the only thing that ever worked was the Prednisone but even that slowly stopped working after taking it for 3 months on end (and yeah, I know you're not supposed to take it for that long anyway but there was absolutely nothing else that would stop the flare-up).

 

So about 3 weeks ago I saw a new gastro-specialist (after having had to wait 5 months just to see her and trying to survive on just the Prednisone which eventually stopped working) who prescribed me the Imuran and I really thought I was saved at that point… but apparently it's not working and in the past few days I've gotten to that point where I'm starting to have bouts of bowel incontinence and I didn't manage to make it to the bathroom on time twice in the past 3 days. Experience tells me that that means I have maybe a few weeks left before I'll have to spend a week or so in the hospital again. My next appointment with that same gastro-specialist is in December… I called today and asked if there was any way they could make it sooner and they said it wasn't an option. I have an appointment with my GP this afternoon but I don't know if he'll have anything to do for me.

 

So basically… I know I'm heading for another stay in the hospital, sooner or later and I'm going to have to go to work tomorrow and I'm afraid of going without an adult diaper (which I'm seriously thinking of getting). So yeah… I'm feeling helpless as all hell and starting to freak out a bit…

Thanks for the support DMC :).

I saw my GP this afternoon and he recommended I go back on 40 mg of the Prednisone and he also gave me an injection of some kind of steroid (I don't remember the name but I'm pretty sure it's either Prednisone or something related to it) that's supposed to help against flare-ups… I've had it in the past actually and it did help for a while… so that might help tuck me over at least for a while… my main goal is to just be able to survive until December. As for seeing somebody else in the meantime… the thing is that I live in the sticks, pretty much, and for any place worth seeing I'd have to wait several months anyway…

That bowel incontinence is the worst, it just makes you feel at your lowest point like you can't do anything or go anywhere without constantly worrying about what could happen :\ Sorry to hear that you're having all these problems. It really upsets me when doctors don't prioritize ulcerative colitis flare-ups... they are really a big deal. Hopefully you find something that works other than the prednisone!