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questions for Carol and Judy

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Ulcerative Colitis
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Posted 11/8/2009 4:14 PM (GMT 0)
     As you probably both know from my posts that I am suffering from ulcerative proctitis.  I have severe urgency and pressure in the rectum...sort of like an elephant trying to pass through a keyhole.  My questions to you are:

     1.  What were your symptoms and what meds where you on when starting Remicade?

      2.  Any adverse reactions to Remicade?

      3.  What diet do you follow?

      4.  Did you ever consider surgery?

Posted 11/8/2009 4:48 PM (GMT 0)
I have left-sided UC. At the time I started on Remicade, I had been on Colazal, Imuran and Entocort for more than two years with only partial relief of my symptoms. I was going 15-20 times a day, bleeding every time, had really bad tenesmus and rectal pain and was barely able to drag myself to work. I was on the verge of having to quit working. I was losing so much sleep that I questioned my ability to think straight.

I've had no reaction except tiredness for the rest of the day after my infusion. It's that warm, relaxed feeling I get just as I'm going to sleep.

I tried just about all the diets when I was flaring and found that diet didn't really make much difference for me. Now I avoid high-fat foods and moderate my fiber and spices a bit. By a bit, I mean eating them maybe every other day instead of twice a day.

I was definitely headed for surgery when my insurance finally approved the Remi for me. We'd been arguing for a year about whether or not it was experimental, and finally I won. I realize it could stop working and I could yet need surgery, but I've had almost four good years already, and hope for a lot more from Remi.

BTW, we're close to the same age, and if I need surgery I'd better not hear any surgeon say anything starting with "At your age..." I'd have to tell him that since he apparently didn't feel competent to help me, I'd find someone who is competent.
Posted 11/8/2009 5:10 PM (GMT 0)
Hey Christine, I too was very sick when I started Remi. I had a full time job and could hardly concentrate, and the blood and mucous + urgency was very bad. I was going at least 20 times per day. Weekends were generally sleep time, and I couldn't take care of the house like it should have been. I was also dealing with a lot of emotional things in my life at that point, so I became totally depressed. I was on Asacal, Prednisone, Rowasa enemas, Azithiopine (sp?) so I tried quite a boatload of meds. Also, I tried every diet; even took all my recipes and made them gluten free, dairy free. Nothing really worked. Until Remi -- and I've had no reactions, only good stuff to say about .
Posted 11/8/2009 8:38 PM (GMT 0)
     Thank you both so much.  I was frightened to start on the 6MP too.  That was seven years ago.  At first it did give me a two year remission, but then my flares got closer and closer together.  I stopped taking it Thursday as it really isn't doing anything.  My PPD test is negative.  I cannot even see where the needle went in.  I'm on 30 mgm of prednisone and I think that is the only thing which kept me out of the hospital this weekend.  Still urgency with bleeding.  Terrible pain trying to pass some stool which is mostly liquid.  Hoping and praying Remicade will help me like it helped you.  Pray for me please....
Posted 11/9/2009 12:31 AM (GMT 0)

I read your post to see how you are doing!  I really feel sorry you don't feel better.  So praying that you can try Remicade and that it works for you.  I hold my breath about every day that I feel as good as I do - not perfect but ok!

ElaineNY

Posted 11/9/2009 12:51 AM (GMT 0)
Christine...all my good vibes and thoughts being sent your way...take care. I'm off to Alabama until Thursday, so take care, and know I'll be thinking about you.
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