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Meds aren't working like they used to

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Ulcerative Colitis
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Posted 10/19/2007 12:46 AM (GMT 0)

Hi everyone, a newbie here.  I was diagnosed earlier this year and at first, the Asacol/Rowasa combo worked great.  So great that I thought maybe I didn't have UC after all and nearly dropped the meds.  Then, the symptoms came back, so for several months, I was compliant with the meds and the symptoms were livable.  But lately, despite being compliant with the meds, the symptoms are getting worse, not better!  I get C and bloated in a flare (which made me doubt the diagnosis since everyone talks about having D!! - and losing weight - I think I've gained lbs with this), and blood, mucus, urgency, mouth ulcers, sore tailbone, even cramps if really bad.  Any ideas on what I can try to get better?  More Asacol?  Different meds?  I haven't tried modifying my diet but I haven't noticed any food triggers either.  Thanks for reading.

Posted 10/19/2007 12:56 AM (GMT 0)
When I started to get symptoms again, I talked to my doctor and he upped my asacol from 6 to 12. I guess 6 is the maintance dose and 12 is treatment/flare up dose. I've been slowly tappering them back down (1 per week). I'd chat with your doctor and get their thoughts.

Posted 10/19/2007 3:10 AM (GMT 0)
Hi..I can relate to the frustration. How long have you been on the med regimen? is your UC throughout your colon or limited?

When was your last c-scope?

Are you on the Rowasa nightly?

Have you contacted your doctor considering you haven't improved a lot..you should have stool samples checked to make sure you haven't got anything else happening in the colon/digestive tract that you could have picked up and flourishing in there.

How many times a day are you going?

Hang tough...you do need to see the doctor and get reevaluated.
quincy
Posted 10/23/2007 3:15 PM (GMT 0)
Don't go off meds without consulting a gastroenterologist familiar with IBD. If you have mouth sores, Crohn's disease is a possibility. / Old Hat (nearly 30 yrs with left-sided UC; currently taking 3 Colazal daily; seem to be back in remission)

Posted 10/23/2007 4:32 PM (GMT 0)
On the same hand mouth sores are also common with UC as well so that alone is not a guide...thing about taking maintenance drugs means you have to stay on them even while in remission from my understanding, to lessen the chance of disease activity re-appearing again...if you go off them while feeling well (remission) then it increases chances of flares.

:)
Posted 1/8/2008 4:52 AM (GMT 0)
You guys rock. I need to check back more often, obviously...didn't even see these last few responses, sorry! I did go meet with my GI and went up to 9, then 12 Asacol, plus nightly Rowasa (it's been this routine for 10 mos. now - two of which on the elevated doses). Everything seems to be getting better except for the blood, which still makes its appearance at least once a day, sometimes even on its own. And, I have the feeling that if I went off the meds it would all go downhill again. My GI said it was live with it or change the meds - seemed to be Prednisone would be the next way to go, and I feel too well to resort to that.

I did wonder that about the canker sores - whether this might actually be Crohns - but then I saw some others here had them too. So, I guess I just wait and see on that one. Wouldn't my biopsies have shown Crohns? Apparently they were consistent with UC.

quincy - thanks for your reply on the other post.... initially my doctor thought it was maybe an impaction.  I went on one of the IBS drugs and it was awful.  It got things moving but I just felt horrendous, worse even.  After my c-scope he told me I had UC and put me on the UC meds, which initially worked so well I thought I was cured forever.  So I didn't question the diagnosis until I just kept reading that D was the symptom, not constipation.  I guess I just need to get over it already, but it's hard to justify all the pills and stuff without being 100% sure why you're taking them (besides the fact that I do seem to do better on them). 
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