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Stoping Lialda

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Crohn's Disease
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Posted 12/23/2009 6:20 PM (GMT 0)
My son was diagnosed with either mild UC or Crohn's (different doctors) almost three years ago.  He has been on Lialda for two years and has been in remission for almost two years.  His doctor feels it is safe to stop taking Lialda but I am hesitant because I read somewhere that if you stop treatment it could return and be worse than before.  Does anyone out there have experience with stoping treatment and either staying in remission or having the symptoms return?
Posted 12/23/2009 6:26 PM (GMT 0)
Oh yeah I do. I didn't want to take maintainence medication when I was young, so I quit taking it. While I was busy getting on with my life the Crohns was still in there doing its damage on a microscopic level until I fully obstructed and had to have emergency surgery. I will never be med free again. Lialda is such a safe med, I would keep your son on it, better safe than sorry in my mind. I have seen so many folks on this very forum go off meds and have their disease return and it also took forever to get back under control. JMHO
Posted 12/23/2009 6:27 PM (GMT 0)
Hmmm...my motto is, "If it ain't broke, don't fix it."

If your son is really in remission only on Lialda, then I believe he should keep taking it, unless it is causing side effects.

Because, yes, I have seen first-hand that when somebody comes off a med, then flares, then tries to go back on it, it might not be as effective as it was, before.

Posted 12/23/2009 7:13 PM (GMT 0)
Your son should stay on the meds.  Maintenance is extremely important.  I attended a seminar given by the head of Gastroenterology at the Mayo Clinic and she said that staying on Lialda, Pentasa, Colazol, etc. decreases your chances of colon cancer by 50%.
Posted 12/23/2009 8:38 PM (GMT 0)
Stay on the meds.  When I was a teen, I wanted to be normal and I took myself off all meds.  Now, in my 30's my Crohn's has been flaring up.  I now react negatively to all medicines and I am currently on Remicade infusions.  My GI was hesitant on puting me on it since I have a mild case but I insisted.  If I had it to do over, I would stay on the drugs and not make the disease get worse.

 

Posted 12/24/2009 12:45 AM (GMT 0)
I agree with the others. No meds = eventual trouble. JMHO.
Posted 12/24/2009 4:05 AM (GMT 0)
I've been asking myself the same question, except that I take Colazal. I was in remission for about a year until I had an anitbiotic induced flare. Before the flare, I was reaching the point where I was seriously considering stopping my meds. I didn't realize that Crohn's can be causing damage on a microscopic level even without symptoms. What exactly does this mean? Is it causing damage that will eventually lead to symptoms and a flare?
Posted 12/24/2009 2:41 PM (GMT 0)
Yes Basil that is exactly what it means. I was young and didn't think someone my age needed to take meds. Well while I was busy getting on with my life, the Crohns was still doing its microscopic damage without me even knowing it. I didn't have any poop problems, could eat pretty much whatever I wanted, no cramps, nada. But my so called remission ended with an emergency resection due to a complete obstruction. So yes without the meds the disease will run wild, even without you knowing it. I am and will always be a big proponent of meds. Why do you think you were in remission, not because the Crohns in a miracle went away, but because of your meds. Crohns is a chronic and incurable bowel disease. Good luck!
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