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BAD morning - again....

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Ulcerative Colitis
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Posted 9/23/2008 1:24 PM (GMT 0)
Morning everyone!  Here I go again.  I stopped Colazal and Rowasa cold turkey as they say for two weeks back around Labor Day - felt good after stopping (side effects of nausea/sweating/tired/dizzy greatly diminished).  Now my doc/NP wanted me to try Lialda and Rowasa (as apparently Rowasa DID help stop rectal bleeding)  Each morning I feel worse.  Starts about 3 a.m. waking up nausea/sweating - you know the story!  UC symptoms remain about same - not bad acually - 2 or 3 BM's morning only and little blood (nothing serious for sure).  I just can't stand being sick from about 3.am to noon.  Any ideas, anyone else have this - think I need to get off the 5 ASA's or something else.

ElaineNY

Posted 9/23/2008 2:21 PM (GMT 0)
Every time you start the 5-ASA's you have these same symptoms, so it's logical to assume the drugs are causing them. Nausea and sweating are known symptoms of salicylate sensitivity. 5-ASA's are salicylates. Adding 1+1+1, I'm getting 3: =you don't tolerate salicylates and should probably stop taking them before you get more severe reactions.

Your GI needs to be more creative in helping you manage your UC. People who don't tolerate 5-ASA's are usually started on Imuran or 6-MP. Elaine, I'm close enough to your age to know that docs sometimes give older patients less aggressive treatment. Be sure this isn't happening to you.

I'd suggest educating yourself thoroughly on the other treatment options, then sitting down with your doc to discuss them. You may need to make an office appointment rather than to continue being treated by phone, which limits your ability to express your concerns and their ability to see how it's affecting you. If your doc isn't willing to consider other therapies, then it may be time for a second opinion, or even a change of doctors.

Your doc and the NP aren't concerned about your reactions; I wonder if they will be more concerned if you develop anaphylaxis from taking drugs you clearly have a sensitivity to?
Posted 9/23/2008 2:38 PM (GMT 0)

Judy - please tell it like it is!!  LOL

I agree with most of what you say.  I do have a wonderful NP but she is following the doctors instructions and I don't think HE really understands my sensitivity to 5-ASA's.  One thing is that he rarely has a new patient my age - doesn't deal with many seniors with reactions like I have.  I had an appointment with NP two weeks ago and she discussed my case with gastro doc and came up with the latest treatment.  I told her I would TRY it.  He is at three different offices during the week - miles apart and inconvenient for me - only one is near me and very limited appointments.  But, if I insisted - however, Rachael actually listens to me and I like her so much better than doc.

Second factor - I have been educating myself a LOT here and every website online I think.  Seems immunosuppressants might be next - Rachael said that.  However, I cannot (don't want to) take them because it makes you susceptible to viruses, etc. and my husband's immune systme is compromised by cancer and chemo, etc.  Also, I cannot have my knee replaced taking those.

As for changing doctors - my other choice would be his pardner or drive way over 50 miles one way.  I know he has been treating me conservative because I am so sensitive to medicatons of all kinds and I have mild UC.

My thought might be steroid enemas next.  I am extemely crippled by my knees and cannot exercise and very overweight.  Makes me want to cry sometimes.  I am a strong willed person and I think a strong person in general.  BUT - impatient also. 

Thanks so much for telling it like it is!!

ElaineNY

Posted 9/23/2008 3:02 PM (GMT 0)
Elaine, I agree, it sounds like you are definitely sensitive. But did you feel okay when you were just taking the Rowasa? I believe not as much is supposed to get into the bloodstream (at least, my doctor has told me that very little gets into the bloodstream with Canasa). Is it possible that just the Rowasa would be enough for you to get things under control, then taper back to Canasa for maintenance?

What about cortifoam instead of cortenemas? (80 mg vs 100 mg of steroid) It might be easier for you to keep in.

Sorry you're feeling so ill -- I hate that nausea!
emory
Posted 9/23/2008 3:17 PM (GMT 0)

I have never used Rowasa alone.

I used Proctofoam and Canasa with not much results.  Doctor felt Rowasa would go up further left side and meet the pills coming down.

Thanks for your caring!

ElaineNY

Posted 9/23/2008 3:48 PM (GMT 0)
Remember that proctofoam is only 1% steroid (8 mg, by my calculation), whereas cortifoam is 10% (80 mg according to their website). Proctofoam didn't do much for me either; in fact, for a couple of weeks, that was all I was taking, and bleeding actually increased. I feel like that was wasted time!

Maybe Rowasa on its own wouldn't bother you too much? Or Canasa more than once a day (I've noticed quincy recommending that to others)?
I think those will be my next steps if the current regime doesn't bring things under control.

Best,
emory
Posted 9/23/2008 3:57 PM (GMT 0)

But what about "treating from both ends".  What subs are there for 5-ASA's in pill form since my UC goes up my sigmoid!

ElaineNY

Posted 9/23/2008 4:18 PM (GMT 0)
I don't know. Maybe quincy will have some ideas...
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