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

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TusMom
Regular Member


Date Joined Sep 2008
Total Posts : 24
   Posted 10/13/2008 6:35 PM (GMT -6)   
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
 
Diagnosed proctosigmoiditis March 2008
Started 400mg Asacol, 3 pills twice a day
Started current flare mid-August 2008
Now on 400 mg Asacol, 4 pills three time a day
1000mg Canasa bedtime
Mesalamine enema at bedtime


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 10/13/2008 7:28 PM (GMT -6)   
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.
26y old male medically disharged USAF veteran.Diagnosed with UC (lower proctitis) in 2004.
 
Current daily treatment:                               Probiotics & supplements:
                                         50 Billion CFU's acidopholis&Bifidobacterium daily
2400mg oral asacol                                      Digestive enzymes
5mg prednisone tapering                             5grams of glutamine
75mg azathioprine                                       folic acid & calcuim with V-D
20mg Nexum                                               Whey protien  
                                                                Multivitamin
Diet:Little/no sugars, fats, carbs, caffine,sugars,yeast. Stay natural as possible.  
 
Results:1 Bowel movement in the morning no blood! Remission since 08Sept08


TusMom
Regular Member


Date Joined Sep 2008
Total Posts : 24
   Posted 10/13/2008 9:41 PM (GMT -6)   
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.

Diagnosed proctosigmoiditis March 2008
Started 400mg Asacol, 3 pills twice a day
Started current flare mid-August 2008
Now on 400 mg Asacol, 4 pills three time a day
1000mg Canasa bedtime
Mesalamine enema at bedtime


potato
Regular Member


Date Joined Jun 2008
Total Posts : 281
   Posted 10/14/2008 12:01 AM (GMT -6)   

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.    


Potato...  Female, 58, dx 11/07 mild left sided ulcerative colitis (50 cm)
asacol 3 3x a day, cortenema (generic) pm rowasa every other day 
culturelle, benefiber wafers  generic acidophilus, metamucil wafers, activia yogurt, spinach & sunflower diet, primadophilus reuteri
children's vitamin, Vitamin E 400 mg, omeprazole 2xday
oxazepam when needed, lomotil or ImodiumAD when needed
Yoga, meditation, The Work by Byron Katie, exercise at least 5 days a week
 
 
 
 
 
 


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 10/14/2008 12:21 AM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 


TusMom
Regular Member


Date Joined Sep 2008
Total Posts : 24
   Posted 10/14/2008 9:11 AM (GMT -6)   

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?


Diagnosed proctosigmoiditis March 2008
Started 400mg Asacol, 3 pills twice a day
Started current flare mid-August 2008
Now on 400 mg Asacol, 4 pills three time a day
1000mg Canasa bedtime
Mesalamine enema at bedtime


quincy
Elite Member


Date Joined May 2003
Total Posts : 30986
   Posted 10/15/2008 2:27 AM (GMT -6)   
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
*Heather* Status..Asacol 6 (3 twice daily); enemas every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 4(Natural Factors Protec) bedtime + Primadophilus Reuteri Pearls occasionally
~multi-digestive enzymes as needed
~Ranitidine,Pariet (reflux);  Effexor XR 75mg(depression);  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!
 

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