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question for the successful remicade users...

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Ulcerative Colitis
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Posted 5/20/2013 4:21 PM (GMT 0)
of course anyone's input is welcome but I am interested in particular to hear from those of you who consider Remicade a success.

what I'm wondering is although Remicade seems to be keeping you in remission, do you occasionally need to use other meds to deal with any symptoms?... I guess if you are having symptoms you are not 100% in remission, but just wondering. I'm curious in particular with perhaps the use of occasional retention mesalamine enemas or suppositories?

What about other meds? I know many use combo's . Who is solely only Remicade as maintenance... ?

I know my colon is not healed yet (getting better each day but not there yet) I've made huge progress, but the last few days feel a bit of tightness around rectum.. wondering if a few enemas would help? GI has told me to drop the 5asa's (i'm weaning off for my own peace of mind after relying on them for 7 years -scared to stop cold turkey although safe i know.. ) Also weaning off Pred. (at 40mg now from 60mg) and have had 2 doses of Remicade..

thanks for any and all input...
Posted 5/20/2013 4:33 PM (GMT 0)
I take 5ASA as well as Remicade. I've no idea whether I need to take the 5ASAs, but since I was so ill I'm not going to take any risks by stopping it. That is my Gastro's opinion and it makes sense to me.
Posted 5/20/2013 5:27 PM (GMT 0)
I continue to take Colazal, but mostly because I have both UC and a family history of colon cancer. I will rarely - may be twice a year - have some mild urgency which is easily relieved with hydrocortisone suppositories for three or four days. Not sure if it's UC or my IBS, but the supps work.
Posted 5/20/2013 10:37 PM (GMT 0)
I quit asacol after it was clear remicade was working for me. I was a little nervous about it, but knew I could start it again if necessary.
I had one very minor flare about six months ago, and took prednisone to nip it.
I take one half an immodium once in a while when I want to avoid needing a bathroom, like I suppose any healthy person could do if they knew their gut as well as I know mine.

I have scarring issues that my doc calls lead pipe which keep my stools from being as formed as a healthy person, but thats not a problem and no medication can fix that.
Posted 5/20/2013 10:56 PM (GMT 0)
This is the second time I have been on Remicade. The first was for about 1 year but then I got pregnant and stopped. Pregnancy made me healthy. This time I have been on it since October. My doctors say I need to take Imuran as well because it makes the Remicade work better and for longer. I stopped taking it though because I don't want to be on drugs. My UC is very severe. Oct-Dec last year I was in and out of hospital all the time, constant toilet accidents, huge amounts of bleeding. Steroids and the other drugs never helped (even in my first flare before pregnancy). No I am trying to heal my body from the inside with Hormone therapy, EPA/DHA, Zinc, Vitamin D, CoQ10 etc I am also about to start Fecal Transplants in the next few months. My advice would be to do whatever works for you and to keep trying things until you find something that works.
Posted 5/20/2013 11:21 PM (GMT 0)
Right now I'm on Remicade along with Apriso and Canasa suppositories. I go for an infusion every 6 weeks and I'm finding I get 3-4 weeks of little to no symptoms and the last couple of weeks I flare up a bit. But I find if I stick to the other meds faithfully, the good period lasts longer and the flare is less severe.
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