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Crohn's Disease
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Posted 9/10/2009 10:50 AM (GMT 0)
I have suffered from CD for 40 years and had a right hemi-colectomy 30 years ago, followed by acute diarrhea that no doctor seemed to be able to stop.

However, after moving to a new district and a new GP I found a specialist unit in Leeds, England and I was prescribed Questran (Cholestramine), which is actually made to lower colestrol but has a side effect as a 'bile binder'. (it's the bile in the large interstine that causes the diarrhea)

I've been taking it for 25 years with no side effect and have been able to live a normal life, without any other medication. Just recently, there has been some supply problems which I'm told are temporary but just to make sure, I went out and bought 3 years supply, as it will keep up to 5 years.

Is anyone else taking the same medication? It annoys me that there are so many doctors who are totally unaware of this medication for Crohn's and will even argue with you when you try to convince them. Anyone had the same problem?? 

Posted 9/10/2009 1:32 PM (GMT 0)
I have been prescribed Questran here in the US. I personally didn't like it as it made me feel yuck. But now I suffer with more constipation than diarrhea so no need for it now. Welcome to Healingwell by the way!

Hugs
Posted 9/10/2009 5:42 PM (GMT 0)
I'm like Nanners. I have it but I only use it if bathroom access will be really limited, like on a plane, because it makes me feel yucky. But just so you know there are also pills available. I have those too. I prefer those, just easier to get down than the powder, but harder to adjust the dosage. Basically the same medication. There are a few of us here who have it. Some of us like it, some not so much. I find it to be a necessary evil for those certain occasions.
Posted 9/10/2009 5:48 PM (GMT 0)
I used to take Questran light when they still made the Light version.  i thought it was a waste of time, but for the last few years have been thinking about asking the doc for it again.  The problem was it only tasted good mixed in OJ and OJ bothers me now.  other than that, i thought it was wonderful to not go the bathroom everytime I ate.  I never felt too bad on it, but I did get a little "fullish" feeling from it.  Mostly it was just difficult to always have pulp free OJ when i traveled...maybe Orange G2 will work...hmmm now you got me thinking of trying it again.  Glad it works for you and welcome to the site.
Posted 9/10/2009 6:58 PM (GMT 0)
For Habs and those who take the powder form,

I can't take OJ either, it really does a number on my tummy. I always mixed my powder in applesauce. And mine was the light version too. I still have some sitting in the back of my medicine closet. I only used about a teaspoon or so mixed in a custard cup of applesauce. The orangy flavor mixed with the apple wasn't too bad. It was the after effects that I didn't like. Oh the bloat and cramps!
Posted 9/10/2009 10:41 PM (GMT 0)
I saw Dr. Brandt in the Bronx NY many years ago, He wrote the book Treating IBD, Raven Press, and prescribed Questran. I was overwhelmed with this disease back then and didnt understand the chloesterol relationship as I didnt have a cholesterol problem and frankly didnt think the Questran applied. So at the time this powder Questran was not heard of for the treatment of Crohns. I did not try it for very long as I was looking for more instant relief at the time. Of course give it a try if in long term it has helped.
Posted 9/11/2009 4:35 AM (GMT 0)
I take Colestid and it is the only thing that controls the diarrhea. It does wear off at the end of the day though.
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