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Ulcerative Colitis
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Posted 9/28/2010 2:41 AM (GMT 0)
it seems to get worse in the afternoon. i've been eating bland and am still getting dry heaves, high levels of nausea, and stomach pain that makes me cringe and tears run down my face. i have to leave classes to use the restroom and then, even if it's loose when it comes out, the BM is like having a baby! it's not so much pushing as it is intense pain! I'm on kytril 3x a day and have also been taking compazine. doc told me not to use reglan since it can cause dry heaving. i've also been using choline mag trisalactate (sp) for the pain, but i'm not supposed to use it that often.

no blood in the toilet, but streaks of blood on the stools themselves. i'm living by myself and am only 20, so this is slightly disturbing. i also have polycystic kidney disease and probably popped a cyst a few days ago (i gave myself a urine test and it showed blood after i'd been experiencing pain), so i don't know what's what.

also running a very low grade fever (99.3) but i don't think that it's a bug, since i generally run a low grade fever with a flare. the only thing is i don't have any mouth sores, which i usually get when having a flare... but i've been having massive issues with hair loss and head sores since this all started. i'd had the hair loss under control for months and now it's back.

i've been coming off of entocort for two weeks now. tomorrow's my first day with no pills, and i don't know whether this is a flare or a reaction to the weaning. i've been on entocort since july 14 2009.

DOES THIS MAKE ANY SENSE????????????????
Posted 9/28/2010 3:45 AM (GMT 0)
I am sorry you're dealing with so much pain. It must be terrible, especially when you're trying to focus on class. I've been in an intense flare for a while, it's finally letting up a little (again), but my symptoms are very differnt from yours. I usually have repeated movements with a lot of blood filling the bowl. I do get intense pain and nausea when I am having a movement. I thought mouth sores were more common with Chrons? I do get them too but not so often. I may get one canker sore every 6 months, maybe even less often. I used to get them a lot when I was a kid. I think the fever is normal for flaring and the hair loss too. I've been losing quite a bit lately, I wonder if it has to do with iron. You could be starting to relapse because of the lowered dose of entocort. Sometimes things do stabalize after tapering. Hopefully you are feeling better soon. Has your GI mentioned using something like Imuran or 6mp to keep your immune system from being overactive?
Posted 9/28/2010 12:50 PM (GMT 0)
Gosh, I'm sorry for your pain!
Symptoms can definitely "rebound" after we've tapered off steroids..... have your tried adding anything else to help support your system as you get off the Entocort?
I'm sure rectal meds don't sound appealing, but, think of it as putting the medication directly on the inflammation; they might really help.
Have you tried probiotics...?
Hang in there.
Posted 9/29/2010 1:56 AM (GMT 0)
I have classes also! My heart goes out to you!
Posted 9/29/2010 2:17 PM (GMT 0)

yes, i have had the severe pain you speak of. 

I found that it improved when I started rectal meds.  Have you ever tried rowasa or canasa.  In fact the severe pain is my first symptom to be relieved once i start hittiing the UC hard with increased mesalamine and rectals.

Posted 9/30/2010 1:26 AM (GMT 0)
the only time i had a rectal med, it came right back out whole... but thanks for trying. it's hard b/c i'm on 15 different RXs and don't know if they might be creating more problems, but i'm petrified to change anything (except the entocort b/c i was sick of the side effects). people have suggested going off all my meds and starting over again (including my brother) but i don't think it's even a possibility.

still feeling crappy! all smells make me dry heave, i'm still having multiple BMs, and i still have nausea and pain. the fever's also gone up slightly. it was 99.5 earlier. honestly considering going to the health center tomorrow, but they never have anything right to say!
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