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Posted 3/11/2009 3:17 PM (GMT 0)
http://www.rowasa.com/about_flare.html

This looks interesting!

Posted 3/11/2009 3:26 PM (GMT 0)
I got "this page cannot be found". I'll try to search for it and see if I can find it myself.
Posted 3/11/2009 3:34 PM (GMT 0)
When you click on the link, it will open in a new tab. When it pops up go to the address bar and remove the letters between the words about_flare.
Posted 3/11/2009 3:41 PM (GMT 0)
That worked Indiana, thanks!
Posted 3/14/2009 12:15 AM (GMT 0)

I wanted to "bump" this up as it could be of great help to many of us....I will take it to my NP - I think she would like to give one to her patients!

http://www.rowasa.com/about_flare.html

Posted 3/14/2009 1:15 AM (GMT 0)
If I had bad reactions to mesalamine orally, would the same thing happen if I took it rectally?
Posted 3/14/2009 4:41 PM (GMT 0)
It's definitely possible AMK...you could request the steroid enemas, either foam or liquid. There is also Entocort, which is a topical oral med...
One can still have side effects, but they shouldn't be as compared to the systemic steroid (pred, etc).

Have you tried the suppositories? they do come in 5ASA (mesalamine), and maybe a low dosage could help...but if you have pancolitis, the area above the rectum will still be inflamed.

When was your last c-scope?

q
Posted 3/14/2009 4:41 PM (GMT 0)
Dakota....good idea regarding the flare diary...at least it could be easy to track.

q
Posted 3/14/2009 8:42 PM (GMT 0)
Q - my GI never mentioned enemas or supp's, maybe b/c I have pancolitis? My last scope was a year ago. When I met w/my GI 2 weeks ago he said he would do another scope in a year. I wouldn't mind treating from both ends. I should talk to him about that.
Posted 3/14/2009 10:58 PM (GMT 0)
Absolutely treat from both ends.....maybe he didn't suggest them because you're not responsive to the 5ASA meds.

Regardless...they are an option, first-line (well, should be) and the doctors should offer them regardless.

It's good to discuss it with your doctor.

Doesn't matter if one has limited or universal UC...the rectum/sigmoid can be treated with the rectal meds because the oral meds do not fully treat the rectum.

quincy
Posted 3/14/2009 11:26 PM (GMT 0)

q- are you using any rectal medicines now?  Did not see any on your list.  You know I can't take mesalamines but thinking of asking doc about rectal low dose steroids - preferring suppositories as I think you know but Proctofoam was not too bad.

ElaineNY

Posted 3/15/2009 3:33 AM (GMT 0)
This was actually something VERY similar to what I try to use to track my flares. My first cycle I actually had a calendar out where I wrote down AM, PM, and night time bms, what they were like, and rated the day. My GI (then) thought it was great when he could just look at it and see progress or lack there of. I also used the calendar to track my pred dosages for the tapers.
Posted 3/15/2009 7:28 AM (GMT 0)

kops2da said...

q- are you using any rectal medicines now?  Did not see any on your list.  You know I can't take mesalamines but thinking of asking doc about rectal low dose steroids - preferring suppositories as I think you know but Proctofoam was not too bad.

ElaineNY


Hi Elaine...oopsie...I changed my siggie a while back..seems I've deleted the Salofalk part. I just added it back, but might not be updated with this post.

 Yes, I'm mildly flaring, been yo-yoing a bit from tapering too fast since Christmas.  I'll be staying on the nightly enemas till the end of the month.    I've been impatient ....it's been mega years since I've had this happen, but I'm a tad stressed because of how I've been feeling physically (which in turn affects me mentally.,I need to get a grip, tongue !) 

I agree, you should consider the supps again.  They're low dosage, and if you can use them, it's way better than nothing.  I think they'd be helpful in tapering the pred.

q

Posted 3/15/2009 1:40 PM (GMT 0)

Thanks!  Somehow I just didn't think you would go entirely without your rectal meds - see how I am learning about you.  I am sorry you have not been feeling well in general too.  I do know how stress and feeling unwell seems to go around and around with UC symptoms, etc.  Sometimes I think how "funny" it is that what I see in my toilet dictates how I "feel" all day - mentally and physically!! 

Tomorrow is my day with the doctor.  Hope he is patient with me and listens and has time to answer all my questions.  I am writing them down.  I had such a good day yesterday and then this morning woke up with a little nausea and yucky - oh well!  Have a good Sunday!

ElaineNY

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