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Ulcerative Colitis
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Posted 11/19/2010 11:33 PM (GMT 0)
I'm currently flaring (not fun when you are in nursing school). I went to my new GI doctor yesterday. He is great. Great personality and seems smart. He did not prescribe me anything though because he wants to run a bunch of tests to see if I even have UC. He mentioned C-diff. I'm really confused on what exactly that is. I know it's a bacteria, but does it go into remission like UC? I've been in remission for almost two months before. I don't feel like a bacteria is the problem. Anyway, if I do have UC then my next step is Remicade. I've tried Asacol and Lialda which both made me worse. I was also on Prednisone for a while and that didn't really do anything either and I'm not about to try it again. Rowassa is what put me into remission last time, but now I cannot keep the medicine in me. He told me Remicade could for 10-12 years. That sounded great at first, but then I realized that's not really that long. I only be 30. What will I do once that stops working? Are going through all these meds really worth it? He doesn't like the idea of surgery because he said pouchitis is very common. I'm just really stressed out. I'm suppose to be enjoying college and I'm confined to my house. While waiting for test results he told to take Immodium in the mean time.
Posted 11/20/2010 12:27 AM (GMT 0)
I don't know why he told you 10-12 years for Remicade, I didn't know there was a time limit on that. I have seen a lot of people who have used Remicade and stopped responding after a few months or a few years, there are a few people around here who have been using it for years and are doing great. In 10 years, who knows what new drugs might be available. It's possible that there are amazing new treatments by then but it's also possible it's more of the same. Did you try 6mp or Imuran? These immunomodulators can be really helpful for treating some. I've been taking 6mp and it hasn't helped dramatically but I've seen other people with great results. Have you triied any rectal meds besides Rowasa? Foams and suppositories are easier to keep in longer.

I think your GI sounds like he is doing a good job, searching for the cause instead of assumming it is UC. If it is C Diff, antibiotics could cure you indefinitely. Are you having a colonoscopy? If you've had a flare up in the past and you've been on drugs for UC, I would think you've had a colonscopy with pathology that showed UC? I don't think pouchitis is very common, i've read that it occurs in a small percentage (5% maybe). I would love to have surgery if I knew the results would be good. I worry I'll end up on the toilet more than I am now. At least after surgery there is not so much discomfort.
Posted 11/20/2010 2:18 AM (GMT 0)
In addition to everything nssg said, if you take Immodium, perhaps you'll be able to hold the Rowasa better?

I know someone who has C. diff as a chronic thing. He's a friend-of-a-friend, so I haven't talked with him directly, but I gather he more or less has flare ups and then it calms down, like a remission. Perhaps some small percentage of C diff cases are not completely resolved by antibiotics?

And then again, some folks with UC are helped by antibiotics. My son's pediatric GI will try Flagyl before resorting to Pred.... my son got out of a flare last spring with 14 days of Flagyl, upping the Asacol by one pill, and adding probiotics and Metamucil. (With all those things, hard to tell what helped the most!)

Like nssg, I hope there are new meds out in the next 10-12 years! In the time I've had UC, so many more options have become available; I am optimistic that there will be more. But in the meantime, maybe you could push him some to ask what else you could do, if you don't want to try the Remi just yet...?

Hang in there! I'm sorry you're flaring.... not fun at all while in school.
Posted 11/20/2010 5:24 PM (GMT 0)
I don't know how they would know how long Remicade works, yet.
I agree, it seems like a good idea to figure out what's really wrong, especially if prednisone didn't help.

Maybe you should take a probiotic too, you don't need an Rx for that.
Posted 11/20/2010 9:55 PM (GMT 0)
I called my GI today, because he told me to call him if the Immodium wasn't doing anything. He was a totally different person. His exact words were "You're in deep crap because I don't know what you have." Then gave me prednisone...which I never wanted to take again.
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