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Ulcerative Colitis
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Posted 9/28/2007 3:56 PM (GMT -6)
My 17 year old son just diagnosed with UC and had a pretty bad flare immediately, was in the hospital for 22 days.  They started him on Remicade, he has had two infusions... I no longer want to have him on that drug (or any for that matter), has anyone ever been on Remicade and then stopped it?  he is being weaned off of prednisone currently and is still on the Asacol.
Posted 9/28/2007 6:55 PM (GMT -6)
I think you should do a lot more research on UC before committing to having your son off all drugs. I'm on Remicade and it has given me my life back.
If you really want him off all meds then he could have his colon removed, but that too is a huge decision that he should be involved in.
UC is not a disease that just shows up and then is cured by a few remicade infusions. It is a lifelong illness that will affect his life no matter what route you or he decide to take.
Good luck and feel free to ask any questions.
James
Posted 9/28/2007 7:55 PM (GMT -6)
How long have you had UC?  I am looking into natural cures, I met a lady that is off of all medications and is on probiotics and natural supplements... she is better than ever and has been for almost 3 years... she is 43 and has been dealing with UC since she was 16... never went the surgery route.  Will be going to that Dr. next week.  My concern of the remicade is what the long term effects are.... does anyone really know.   What caused you to take the Remicade?

Posted 9/28/2007 11:35 PM (GMT -6)
There may be several causes of UC. If you have UC that is caused by a fungus or bacteria sometimes it can be controlled with antifungals.
I have had UC for about 2 years, I tried to control it with diet, almost all of us take probiotics. I believe the cause of my UC is autoimmune. My immune system is out of whack and thinks my colon needs to be killed off.
I was unresponsive to most of the medicines including prednisone, asacol, azathioprine, and rowasa. Basically it got to the point where I needed to decide whether to remove my colon or try Remicade.
I'm not ready to have my colon removed yet, and if it's removed it can't be put back. I can go off remicade anytime. But that will probably mean committing to months of surgery and recovery.
If you take your son off remicade and he gets sick again it might not work to put him back on it. Sometimes people build a resistance to remicade when they are taken off of it and then it won't work to put him back on it.
I just would take my time and very carefully look into the other options and risks associated with them before taking your son off Remicade.
You should also consider how well he'll be able to stick to an antifungal diet, or whatever route you choose, as a teenager or college kid.
I can't imagine what it would be like to be 17 and have UC, it was hard enough coming down with it at 28.
I hope you are able to find him relief.
James
Posted 9/29/2007 9:53 AM (GMT -6)
You can expect to recline in a chair, be hooked up to an IV and relax :)
You will be probably be given a benedryl and might feel tired for the rest of the day. I take Claritin so I don't get sleepy, and then I go to work when I'm done.
Many people feel better after the first infusion, but for some it takes a few. I felt better after about 2 or 3 infusions.
Best of luck!
James
Posted 9/29/2007 9:54 AM (GMT -6)
I to am starting Remiicade next week
I read that remicade is for people who dont respone to other treatments...
Posted 9/29/2007 3:24 PM (GMT -6)
I've had two infusions, they seem to work very well for me but just for about a month. I am due for another in two weeks. My GI thinks that stresses in my life are affecting the UC a lot (loooong story, but yesterday he put me on Lexipro for situational depression and I hope that helps). After just a day or two after my infusions I felt like I never had UC. I was off the Rowesa (back on it for the time being, did NOT miss the purple toilet stains and going to bed early to take care of biz before hubby came up) and was finally getting off Prednisone. Then my symptoms came back after a month.
I was started on Lialda today, I have been reading here that it works better than Colazal for some people, it's certainly nice to take pills in the mornng and not have to sweat them again for the rest of the day.

It would be nice to go back to no meds at all, but with UC your son will probably always be on something, probably Asacol, Colozal or Lialda to try to keep him in remission. Remicade really gives me a lot of relief when it's working.

Meesh
Posted 9/29/2007 8:47 PM (GMT -6)
I hate the entire thing!!!!
Posted 9/30/2007 5:40 AM (GMT -6)
I know this is difficult to deal with and there's a lot of new information to take on board but I agree with James above - take some time to research and learn all you can about this disease. Your goal should be to help get your son as healthy as he can. If that takes drugs then that's ok - the point is that he gets well and stays well. Some people have had success with natural therapies but others need drugs and you'll find a lot of people on this board whom have been given their life back through the drugs. I take 8 tablets a day and do enemas when I flare, but I love the drugs I'm on and wouldn't want to be without them. I had UC with no drugs for 3 years (took a long time to get diagnosed) and it was horrible - simply horrible.

I hope it all works out for you and your son - please come back and ask questions as you learn more about it.
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