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what if canasa does not work

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Posted 8/6/2009 6:08 PM (GMT 0)
Hi, It's been awhile since I posted on here, but...about a year ago..i had a colonosocopy, and the whole colon was a mess.  I incresed my Imuran, went on tapering preds, then off the preds to entocort, and...i had a colonsocopy a week ago, and everything looked much better, except the end of the colon and the rectum.  So, my doc. put me on canasa.  Unfortunately..that made everyhthing a lot worse.  I guess i'm one of the few that those mesalamine topical type drugs don't work.  Has this happened to anyone?  Has anyone tried the entocort enemas?  I feel like i'm so close to getting this at least under control..but have made several steps in the wrong direction with taking these canasa suppositories.  I have left my doc.  a message, but have not heard back.  The pill entocort worked awesome for me..but..i have a feeling he won't want me on anything having to do with steroids.  So, i might be screwed :(  I just can't believe i had such a bad reaction to the canasa.  ugh...
Posted 8/6/2009 7:44 PM (GMT 0)
It is strange because the first time I tired Canasa it did not work at all. In fact it seemed to make it worse. That time I got the flare under control with Lialda alone. A year later, I flared again and it was MUCH worse. I had to go on pred and also tried Canasa again. It helped that time...since then I have had several mild flares and Canasa seems to help now... The cort enemas also did not work for me the first time but now work wonders. Remember that the cort enemas are not a systematic pred so they only work in the area where they are needed. Your doctor might want you to try them.
Posted 8/6/2009 7:56 PM (GMT 0)
Ok, thanks for your response. Yea, it was so frustrating, cuz..even though the rectal area looked inflamed in the colonoscopy, I had really felt fine. I was in such bad shape a year ago..that I dropped 30 pounds..and i'm not huge to begin with. Over the past year, i gained the weight back, and was able to resume all normal activities, so..it is very depressing that the canasa has made me feel as bad as I did a year ago. Not to sound too graphic..but..it feels like i have a brick stuck down there sideways. yea, i did NOT feel this way before taking this stuff. Gosh..i just want to go back to the way i felt before i started this stuff. I don't know if i can physically go through a flare up as bad and as as long as I had last summer. Hopefully once i'm off this for 2-3 days...i'll start to feel better. Thanks again for responding. Hopefully something other than canasa will work for me.
Posted 8/7/2009 8:32 AM (GMT 0)
Hi. Yes, Canasa isn't for everyone. It makes me feel worse too. I can sometimes deal with Rowasa (mesalamine enemas) but generally they are also not great for me. As Thatfield said, the Cortenema is not the same as taking pred, so I wouldn't worry too much. Generally, when I'm in bad shape, my doctor has me use Cortenema for a couple weeks, taper, then switch to Cortifoam. You can pretty much use Cortifoam long-term without problems since the steroid absorption is minimal. My doc has told me that and someone else here with a big doc at UNC-Chapel Hill (I think) confirmed it too.
Posted 8/7/2009 4:07 PM (GMT 0)
I tried canasa and it did nothing for me. Now I take proctofoam and I don't see a huge difference either but maybe if I stopped it i would be worse.
Posted 8/7/2009 7:56 PM (GMT 0)
Well...i just talked to my dr. Tonight I start on Cortenema's. Not looking forward to administering these. Luckily i've handled prednisone well in terms of side effects and improvement(knock on wood) when i have a bad flare up. And...now that the main part of my problem is that lower area...hopefully these will help and..while they do have their side effects..don't seem to be quite as dangerous as Oral Prednisone. Gosh i'm not looking forward to taking these though. I just hope the annoyance of taking these is offset by the improvement i get from them. Thanks for the responses.
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