20 year old college student with UC - Remicade

well, if nothing else is helping, remicade is a popular med for UC. since most people are diagnosed between the ages of 15-30, it's pretty common for young people to be on it. i didn't have too many side effects on it besides migraines and frozen joints. it helped me but stopped working too soon.

i hope the colonoscopy isn't too bad!

Don't worry about remicade, if you aren't happy with your UC situation now and remicade is the next option. Probiotics and other things won't necessarily help but they couldn't hurt to try just like remicade. Yes there are possible risks, but there are risks with everything and you won't know until you try, it could be the best thing that has ever happened to you. Don't misunderstand me though, it could also be the worse thing, but you won't know till it happens and there isn't much point in worrying about it.

Good luck.

So I had my colonoscopy done yesterday. The inflammation has not traveled any farther throughout my colon, still only the proctosigmoiditis. They said that on a scale of 0-3, with 3 being the most severely inflamed, I'm a 3 for the area affected. I've been taken off of the enemas, both Rowasa and hydrocortisone, and also taken off of the azathioprine. They want me to begin Remicade, probably in the next week or so. I was also told that there is no indication of cancer, and that my GI has no worry about that for right now. He did take a biopsy to test for some sort of virus, as anyone heard of that before??

I never really had any troubles with diet before, so I have not tried to really change what I eat, at least not drastically. I have been more aware of the fatty foods, and spicy things, that I put in my body, things that are the usual suspects of increased colon activity. Cut down on caffeine intake as well. I have not tried probiotics, my GI says they are expensive and don't have enough background information to be considered something that will help me without possibly hurting me.

I'm going to start the Remicade because the inflammation is too much to live with; I go too many times a day and feel crampy and gassy and blahh. Too much blood to deal with (will hear about test results tomorrow to see if anemic or not, or if anything else is up). So yeah, that's my situation right now.

garylouisville: It's great that you're able to manage your symptoms through supplements, probiotics, and diet management, but that doesn't work for everyone. I've tried all three, and I just get sicker and sicker unless I take medication. Not only that, but VSL#3 is very expensive, even with a copay, and I consider it prohibitively expensive as a graduate student.

UC_college_guy: I'm in the same boat as you--current treatments aren't inducing remission, or managing my symptoms enough to let me live my life! It's irritating enough when I get to work late because I had to make 4 bathroom trips before I leave the house, or when I lose an hour of my day at work because I have to keep running to the bathroom. I work as a teaching fellow at my university as well, and when I'm teaching, I can't exactly excuse myself for 10 minutes while my students sit there waiting for the lesson to continue!

So it sounds like Remicade is going to happen for me as well. Your doctor will need to check and make sure you don't have any infections, including latent viral infections such as hepatitis and TB. Remicade functions as an immunosuppressant, so it's much easier to get sick when you're on it, and any latent viral infections you might have will just pop up and make you super sick. If I test positive for any latent infections, I will have to try azathioprine instead, but I'd really rather use an antibody, since it has a much more specific target. I had blood and stool samples taken yesterday, and a flex sig scheduled for tomorrow (happy Valentine's Day to me!), and it looks like my insurance will cover it. So hopefully I will be able to have my first infusion within a month.

I've been on Remicade for my UC since May 2012 and have been doing well, except now I think I may be developing antibodies to it. This past week my joints have been hurting (starting in a finger, knee(s), wrist) and I was told that may be what's happening. There is a test for it so I'm going to see my GI soon and ask about it. I was on Lialda for a few years before Remicade but it stopped working (ended up in the hospital last spring from dehydration) so I was put on Remicade. The Lialda also caused my liver enzymes to be very elevated after determining that via a liver biopsy. I'm hoping I have not developed antibodies as I think the next option would be Humira and there is a low chance it will work if Remicade caused antibody issues. Hang in there, you are not alone.