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How do you know when you're coming out of a flare? Symptoms vs. side effects??

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Ulcerative Colitis
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Posted 10/13/2008 11:35 PM (GMT 0)
Hi--

A question or two for those of you with more experience with this disease than I: how do you know when you're coming out of a flare?  I started a mesalamine enema last week, in addition to my upped Asacol, and thought I was doing better because I slept through the night 4 nights in a row (until last night :( ) and made fewer trips to the loo during the day.  I still had D with some urgency, but less frequently.  Last night and today have been not so good again, so I just don't know.  And how am I supposed to tell if the D is from the UC or a side effect from the meds...almost all of which have said that D is a side effect!!!  How can a med given to treat D also cause D, for Pete's sake?  I am beginning to worry that nothing will work, and am trying to stave off the panic that induces.  I haven't tried a cort enema (is that right?) or prednisone yet, and don't want to try the latter if I don't have to, but I am becoming desperate!  And then I worry, what if even the pred doesn't work?  Will this never end???  Will my life never come back?  I am not a cry-er by nature, but man, last night as I sat in the bathroom, I felt like wailing in frustration.


Thanks for the ear...

TusMom

 

Posted 10/14/2008 12:28 AM (GMT 0)
Asacol to me is a maintainence drug, for some though it can keep them in remission, but i havent heard to much of asacol alone bringing you into remission. You might want to consider something else, talk with your GI. Sure prednisone has some side effects but good god its not like and evil 4 headed beast thats going mess you up for life that some people make it sound like. Your first time with it is quick and effective most of the time. Get into remission and start helping yourself through diet and start some probiotics if you havent yet.
Posted 10/14/2008 2:41 AM (GMT 0)
Thanks for offering a measured voice on the prednisone thing, mh53mike.  I wouldn't have given it much thought before reading some of the posts on this forum, which kind of scared me.  But feeling normal is a priority at this point.  And yes, I've heard that about Asacol, too, so I'm not sure why that was my GI's (or her NP's) first plan of attack.  Sigh.  I need to call my GI back this week to check in, anyway.

Posted 10/14/2008 5:01 AM (GMT 0)

TusMom, I used prednisone for a flare back in February, and although it helped a lot, I still had bleeding occasionally and think I stayed in a kind of low level flare. 

Then after some dental work and an antibiotic course this summer, I got worse again, and this time tried a hydrocortisone enema because I didn't want to begin yoyoing on prednisone.  The enema has worked really well, I know I'm getting less cortisone in my system, and there are fewer side effects.  I'd recommend you consider it as your next choice.

Oh, and I quit my generic mesalamine enema because I got worse when I used it.  I always had more D on the days I used it.    

Posted 10/14/2008 5:21 AM (GMT 0)
hi...you haven't been on the enemas any where long enough to have them give you extreme improvement. I personally don't think you need to think of prednisone. You might want to consider a cortifoam in a while if you need a little boost for the 5ASA.

While healing, one might have a little regression, a day or two, but if you're improving then give it a few weeks at least.

No consolation, I'm sure, but I was once on the enemas for almost 4 months nightly.

Regarding the Asacol...if you jumped from 6 to 12, you could have some from the increase.

When did you increase the Asacol?

q
Posted 10/14/2008 2:11 PM (GMT 0)

Thanks, potato.  That is actually on our list of next-steps, a hydrocortisone enema.  I'm glad to hear it was actually more effective for you than the prednisone.

quincy: I increased the Asacol about a month ago, on Sep. 18.  As for giving the enema more time, my GI said to give it 5-7 days to show improvement, and I'm there, and nothing has really changed; another bad night last night.  The goal was to see improvement over that first week, then use it every 3rd night.  I will ask her about lowering the Asacol, though, because it certainly isn't doing anything, and maybe even making things worse.

Here's a silly question: what is cortifoam?  Is that a hydrocortisone enema?  And am I right in understanding that a hydrocort enema is basically a topical application of steroids?

Posted 10/15/2008 7:27 AM (GMT 0)
cortifoam is a steroid hydrocortisone enema..in foam form.

colocort and cortenema and the generic are in liquid form like the 5ASA enema you're using now. Yes, they are considered topical, but one could have mild steroid side effects since it can be absorbed into the body via the colon...just the same as the 5ASA can. They aren't considered systemic which have the full dosage of the med go throughout the entire body system to deal with inflammation.

Kind of a weird way your doc is dispensing the dosage of the 5ASA enema...hurried methinks. But, some definitely cannot take it and as potato mentioned they do seem to get worse.

the mesalamine enemas do come in a 2gram dosage..fyi.

quincy
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