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Posted 9/29/2009 12:59 AM (GMT 0)

Hello!

I was diagnosed with mild UC in April 09.  I took Rowasa enemas for 3 months and had a follow up exam.  My symptoms cleared up within a week of being on medicine and my scope exam was clear.  Since I responded well, my GI decided to take me off of meds in July 09.  I have been doing fine, but I always read and heard that I would be on medication for life with UC.  Has anyone heard of being medicine free with UC?  I'm concerned that I am not preventing a flare up. 

Posted 9/29/2009 1:13 AM (GMT 0)
I would be concerned too. I wouldn't be comfortable not being on meds. You're lucky though that the Rowasa is so helpful. It doesn't hurt to stay on it long term and doing like two nights a week wouldn't be bad at all. I would consider that at least.
Posted 9/29/2009 1:45 AM (GMT 0)
You may never need a drug again and never flare again! My advice would be to go drug-free to avoid the toxic side effects, and see if you go flare-free too.
Posted 9/29/2009 4:51 AM (GMT 0)
When I first had symptoms, I was treating them with Canasa suppositories and I would only use them when I had symptoms. I did great. When I ran out of medication and couldn't afford more, I was forced to stop using them even when I had symptoms. My life got really stressful and I allowed myself to deteriorate to a terrible point. I now have to use a lot more meds to maintain. I think it is okay if you're doing really well but always keep your eyes open and know the symptoms of a relapse. If you think anything is getting symptomatic, have enemas or suppositories on hand to keep it mild. Don't let what happened to me happen to you!
Posted 9/29/2009 12:26 PM (GMT 0)
I went med free for 6 years with complete remission from late 2003 to may of this year then I had a major flare. I don't see anything wrong with it if you are in remission. Why put drugs into your system if you don't need them. I would still take probiotics and a multivitamin to keep your body healthy.
Posted 9/29/2009 1:16 PM (GMT 0)
Interesting that your doc would take you off all maintenance meds; I think you need a second opinion on that one. Maintenance meds are just that -- to help you maintain remission. Think about it; can you imagine a doctor telling someone who relied on meds to save their life or had a psych problem to go off their meds because they were feeling better? Not a good option -- but this is my opinion. If you are not comfortable, please seek another opinion of a good doctor.

Posted 9/29/2009 3:10 PM (GMT 0)
I am med free b/c I cannot tolerate mesalamine and do not want to be on 6mp or anything stronger at this time. I'm maintaining remission with Fish Oil, Probiotics and Standard Process supplements. Although, if I could tolerate mesalamine I would stay on it even if I was feeling better to maintain remission. Whatever you decide I would still make sure to take fish oil and probiotics.
Posted 9/29/2009 3:13 PM (GMT 0)
I honestly wouldn't be comfortable not staying on maintenance meds. The mesalamine enemas are quite safe for long-terms use...safer than oral mesalamine because so much less is systemically absorbed. You could maybe use them on a maintenance dose of every other night or twice weekly. I'd seek a second opinion before making your decision.
Posted 10/3/2009 12:20 AM (GMT 0)
I am Colitis-med free. I used fecal transplantation to get the bacteria back into my colon. My second flare, which was serious and wasn't responding to prednisone, went immediately into remission and my BMs returned to normal. I took antibiotics for a bladder infection about two years later and got a third flare. That flare went away with a change in diet and probiotics. I watch my diet carefully, take Probiotics every day, pay attention to make sure my bowel movements are healthy and normal, and don't take antibiotics unless I absolutely have to. That's how I prevent having another flare.

When I first went into remission after my second flare, my doctor insisted I take maintenance medicine. I was confident that the fecal transplantation had work and did NOT follow his advice. The last time I saw him, he said it was fine for me NOT to take maintenance medicine since I wasn't flaring without it. He said some people need it and some don't. I'm gathering that since your flare was mild, your doctor feels you don't need it. There are some people who are always flaring, even with maintenance medicine.
Posted 10/4/2009 6:17 PM (GMT 0)
Wasn't there a thread about his started a few days ago or am I loosing it???? I am sure Quincy and I responded to one.  I couldn't find it.

Anyways...


My GI stated that meds are not required if I was in full remission, no symptoms, but to start back on at the first sign of one. There is no proof that the meds will prevent you from getting worse then your original flares. The maintenace meds do not control your immune system, but the symptoms that your overactive immune system create.
Posted 10/4/2009 7:31 PM (GMT 0)
There was a system crash and some posts were lost...you're not losing it..lol.

I've never been worse than my original flare and pretty much always been on maintenance meds. I think that accounts for "something". Of course, I'm faithful to them....

I get the biopsy results at the end of the month.

Studies...hmmm, there are always variables that they don't mention.

Regarding diet, according to others, my colon should have pooped out long ago since I don't follow the "diet rules"...so I guess I can put much of my faith in the meds.

Of course....I've NEVER been on pred...and I suspect that pred can set one up for possible med failure and disease spreading in the future. No studies on that.

q
Posted 10/4/2009 11:50 PM (GMT 0)
Whew, thanks for letting me know Quincy, I spent about 30 minutes trying to find my post I made originally.
Posted 10/5/2009 9:19 PM (GMT 0)
I think probiotics and having a healthy diet are key here. All my pain and diarrhea disappeared after taking a bunch of probiotic pills. The only reason I had so much faith in them was because I was in the hospital on antibiotics and the pain stopped during a terrible flare-up. Oddly, no doctor I have been to ever recommended probiotics btw.
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