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Trying to stay positive during terrible flare: week 10

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Ulcerative Colitis
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Posted 4/20/2014 1:55 PM (GMT 0)
I had mild proctitis / colitis until a flex sigmoidoscopy at the beginning of March that made my intestines very MAD. I have been in the hospital twice, which taught me that my body perceives steroids as POISON. I have had non-stop D with blood for 2 1/2 months and had to go on medical leave from work.
I started on Uceris 5 days ago. I can tell that something is different, but it's nothing to celebrate yet.
This is so depressing. I don't know if my life will ever be normal again. We have a small child who is old enough to be scared and angry about Mommy feeling bad all of the time.
How do you keep from being a black cloud? I was so active, healthy, busy, and happy until this.
Posted 4/20/2014 2:02 PM (GMT 0)
you don't - you just look for things in that cloud that can keep you feeling somewhat normal -

the old normal ? don't look for that one any time soon - better to accept the new normal - at least for now -

anyway, welcome to the wrecked butt gang !
Posted 4/20/2014 2:03 PM (GMT 0)
Against my GI's orders, I take L-Glutamine (only thing that stops D for a few hours), intense probiotics, and some kind of super foods megavitamin that tastes like salad in a tablet.
My GI thinks these are experimental, but they are a lot safer than the Rx meds and the only reason I am not 100% depleted.
Posted 4/20/2014 2:04 PM (GMT 0)
Welcome to the forum, Potty Pilot. Sorry you are feeling so bd. I hope that Uceris will begin to improve things more significantly for you, soon. What oral meds are you taking?

How long have you had UC and what were you doing to treat it before? I had a scope induced flare a few years ago and I agree, that totally sucked. It took me 4 years to agree to another scope after that.
Posted 4/20/2014 2:08 PM (GMT 0)
Thanks, kazbern.
I was diagnosed in 2004, but only ever had mild discomfort that Asacol cured.
I really believe the flex sigmoid did this. It may have been how they sterilized it? Maybe it irritated me? Maybe it wiped out the good bacteria?
I am not on any other meds.
Posted 4/20/2014 2:24 PM (GMT 0)
Hi and welcome.

I read your post with interest. Can a scope induce a flare. I had a flexi sig 3 weeks ago which showed no active inflammation and then a colonoscopy yesterday which showed inflammation in my rectum and sigmoid. Even though I had some blood before the flexi sig scope the blood came with avengence after it. Interesting.

Anyway, I feel like you at the moment. When you find the answer let me know. Even trying to keep busy is hard because it is always on my mind. Its taking me a long time to come to terms with this. Going to work does help to keep my mind off it a little bit.

Sorry I can't be more positive. I am waiting to get my meds sorted then things may get better. Lets hope the Uceris helps you. It may be early days yet.
Posted 4/20/2014 2:51 PM (GMT 0)
I think it was the prep that did me in, frankly. I've had four scopes (I think?) in my history of IBD and I've used a different prep each time. I can't remember which one I used, but in any case, my disease was much more active for that one than it is now, thank goodness.

Potty Pilot, if your inflammation is limited to the rectum and sigmoid colon, you'd be best served by using a rectal mesalamine plus an oral, like Asacol. Uceris is great but I'm sure it's $$$$$. Plus, you know it's a steroid, right?
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