Choices and looking for Data.

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Quandry
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/22/2009 2:24 PM (GMT -6)   
First time here. Diagnosed last August with UC and started on 60mg of Prednisone then tapered. I also take 12 capsuls of Colozal. Managed a whole week and a half before flare-up then started all over with 40mg and now down to 20 this week. Met with my Doc who said one more flare-up and I will have to start another drug therapy (Imuran). If that doesn't work, then (6-Mercapto). If that doesn't work then surgery to remove the entire colon.

Am I wrong to think that the initial diagnosis and one subsequent flare-up seems rash to immediately begin the drug upgrade considering the side effects of those drugs? Should I get a second opinion or is my Doc just sparing me the inevitable and the side effects of prednisone?

Stats: I'm 47, overweight, high blood pressure (meds) low cholesterol, macular degeneration in one eye.

I am a born skeptic but a realist. I'd like to know first hand stories and/or places where I can get data that would help me make a decision about the real side effects of those drugs versus having the surgery "out of the gate" and get rid of this disease. Maybe I'm overreacting, but taking a chance on all of the serious ailments considering long term use of these drug therapies doesn't seem to outweigh the issues associated with surgery.

But I don't know.

I appreciate all input:)

Quandry

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/22/2009 3:16 PM (GMT -6)   
Hi Quandry.  Welcome.  Seems a little rash.  Have you tried any of the rectal treatments yet?  Like Rowasa or Canasa?

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


Quandry
New Member


Date Joined Feb 2009
Total Posts : 5
   Posted 2/22/2009 3:18 PM (GMT -6)   
Those haven't even been mentioned by my Doc.

Mamas Boys
Veteran Member


Date Joined Oct 2005
Total Posts : 1460
   Posted 2/22/2009 3:24 PM (GMT -6)   
The theory is that you should treat this disease from both ends.  UC generally starts in the rectum and works its way up the colon.  Taking oral meds reaches the colon but not necessarily to the lower sigmoid and rectum area.  Using rectal meds - like suspension enemas and suppositories deposits the medication topically directly on the area that is flared.  So - most of us use both the oral meds (like Colazal or Asacol) and the rectal meds (Rowasa suspension or Canasa suppositories) and in this way we are more effectively treating the inflammation.  I would definitely ask your doctor about the rectals.  I was able to control my flares in this way for a quite a while before needing to move to prednisone and so on.  You might even find that you will be able to lower your Colazal to 9 pills a day - which is considered the normal maintenance dosing (some people even go down to 6 pills).

Mamas Boys
Colazal, Azathioprine, Remicade
Culturelle, MultiVitamin, Folic Acid, Viactiv
Status: Remission!!


mtgman
Veteran Member


Date Joined Mar 2005
Total Posts : 1289
   Posted 2/22/2009 8:32 PM (GMT -6)   
this is a great site to find a lot of the information you are looking for...there are literally thousands of posts regarding people's personal experiences and feelings about drugs, treatments etc...I find healingwell.com to be the most helpful, reassuring and almost calming resource. You'll find out fast that for almost any situation you may find yourself in you're not alone. People spend a lot of time sharing their information and offering ideas, suggestions etc. based on their actual ecperiences.

I think for everyone it's a matter of finding the drug/combo that works for you. Personally I would only consider surgery as a last resort, but not knowing how bad you're feeling...

Good luck with your research and your decision...and remember your GI is not the only one out there...if you're not comfortable with their advice/treatment plan go see another for a 2nd opinion...

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 16280
   Posted 2/22/2009 9:05 PM (GMT -6)   
I would definitely see another doctor. You were recently diagnosed, it doesn't sound like you have tried enough treatments to be thinking about surgery. Maybe rectal meds would help or maybe tryin to figure out what sets off your flares. You could keep a food journal.

Diagnosed with proctitis in March 2007 - Treated with Canasa 2x Daily
Diagnosed with UC December but had symptoms months ago - Treating with Asacol (feel hopeless)

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