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Steroids work and then they dont?

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Ulcerative Colitis
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Posted 7/27/2012 1:08 AM (GMT 0)
The first time I went on prednisone my colon was the most inflamed it has been and the steroids were used to really knock it out and I had no problems for like a little over a year. Now ive been going through a flare I had a scope and the doctor said that its not as inflamed and its only in the lower part so im wondering why steroids would knock it out when its really inflamed then the same ones dont do as well when its not as bad. Thanks!
Posted 7/27/2012 2:01 AM (GMT 0)
The disease is crazy and unpredictable. I had only a spot in my rectum, about the size of a quarter, that I could not get in remission. The only thing that allowed me to function was 40mg of prednisone. The other 22 pills I took per day nothing. I opted for surgery just for that tiny area; my colon was fine.

Sue
Posted 7/27/2012 2:12 AM (GMT 0)
Prednisone worked for me for a little while. Then I became steroid refractory. I would only respond to a mega dose like 60 mg. As soon as the taper began, I would be back to square one.
Posted 7/27/2012 2:32 AM (GMT 0)
I am experiencing the same thing...I flare, go on 40 mg of prednisone, start doing better, taper, than flare. I see my GI tomorrow and I know he is going to say to start tapering again. I have been back on 40 mg since the beginning of July and with exception of about 6 weeks have been on steroids since september.

I know prednisone makes some crazy, but I sort of like them. When I take prednisone, I have energy, can eat,and my mind feels clear. Does that make me a junkie? I am very aware of the roid rage it can cause therefore I work very hard to curb my tongue and practice patience. I am just afraid that if I come off of them, they won't work the next time I need them.
Posted 7/27/2012 2:34 AM (GMT 0)

suebear said...
The disease is crazy and unpredictable. I had only a spot in my rectum, about the size of a quarter, that I could not get in remission. The only thing that allowed me to function was 40mg of prednisone. The other 22 pills I took per day nothing. I opted for surgery just for that tiny area; my colon was fine.

Sue

I know you feel great now, but removing the whole colon and + just for a a quarter size in the rectum. WOW! I didn't know that.

That's like throwing a nuclear bomb on a bunch of infantry units if I were to use a military analogy. Basically, overkill.
Posted 7/27/2012 2:41 AM (GMT 0)
Somedude,
That quarter size of inflammation in her rectum probably kept her on toilet all day or she wouldn't have had surgery.
Posted 7/27/2012 3:52 AM (GMT 0)
Somedude,

Hardly! That quarter size spot had me crapping bloody diarrhea up to 30 times per day. It also caused fevers and spontaneous vomiting. At times I was incontinent, I could never predict when that would happen and it was oh so lovely in work meetings. I lost all my B-12 stores and became anemic. That's what a tiny area of uncontrolled UC can do. And unfortunately removing just the rectum, would have meant additional surgery later on, not that any self-respecting CR surgeon would do that, but I'm heading off you next question as to why I had everything removed. I've never questioned it or regretted it. I've lived a whole life for the past 11 years.

Sue
Posted 7/27/2012 7:20 AM (GMT 0)
Are you on any rectal meds to help deal with that area? Can you take the 5ASA meds at all...oral/rectal?

q
Posted 7/27/2012 12:09 PM (GMT 0)
I'll echo my suggestion of rectal meds from your other thread. They are what will help heal that lower part of your colon. Sure, in some cases, they don't work (suebear is the classic example). However, for a lot of us, they really help.
Posted 7/27/2012 8:44 PM (GMT 0)
     Suebear's case sounds similar to what I went through.  However, my entire rectum was BAD, really BAD.  Oddly, the rest of my colon was in pretty good shape except for minor diverticulosis.  Yes, it is a pity that they have to take out the entire kit and kaboodle.

     The rectum is the most stubborn to treat and it sure did NOT like all those rectal meds. 

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