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Ulcerative Colitis
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Posted 9/20/2007 4:12 AM (GMT -8)
Has anyone here stopped taking Asacol and remained in remission? For how long? I think I'm in denial about having Crohn's Colitis, as my health this summer has been nothing short of perfect. I stopped taking the Asacol a couple of months ago, and am wondering if the meds were making my symptoms worse. Any comments?

Thanks,
Dawn
Posted 9/20/2007 4:35 AM (GMT -8)
well i just mentioned the same thing recently. i have been on 12 asacol a day for about a year now. i have never been in remission. i started Remicade in August and quickly became healthy. about 3 weeks ago i stopped taking the asacol. i have not had any flares since then however it has only been 3 weeks. I am certainly not an advocate of not talking to your doc about stopping your meds however i have done it too. sometimes i just get tired of it all. i hope you continue to feel well.

Good luck
Posted 9/20/2007 5:24 AM (GMT -8)
This is a chronic, life-long condition/disease that needs life-long treatment. Certainly, you can choose to stop taking your meds. But if you are feeling fine, you are not having any side effects from the meds, I think you are playing with fire.

You may never have another flare, taking your meds or quitting them, but I submit that you are likely increasing your chances of having one by not taking your meds.

For some folks, after stopping their meds and experiencing a flare, those same meds did not work for them when they attempted to bring it under control again.

I understand how difficult it is to deal with the idea that this is a chronic, life-long condition that will not go away. I have two of them. I've had some compliance issues with my depression medication in the past, as I have been dealing with that for two decades now. Maybe I've mellowed with age. I know that I learned a lot about acceptance in therapy, and I think that has made a huge difference in my attitude about my depression and my colitis. I understand it is not pleasant to take a medication every day. But I also understand that I am increasing the likelihood that I will keep my colitis and depression under control by taking my meds faithfully, as prescribed, and I take them each morning and forget about it. Not gonna fight it anymore; I lose that battle every time, sooner or later.

Good luck.

Mitz
Posted 9/20/2007 6:09 AM (GMT -8)
It's so temping to stop the medication when we're feeling great. I also go into full remission for long stints. I soon forget why I'm taking the drugs (after 23 yrs you'd think I'd learn). Sometimes I get on special diets like SCD, or healthy special supplements and think "It's working"! I get off the meds, workout, run...Then, a flare.

Especially the Colozal (9 large capsules per day). It's easy to forget those. Time goes on and you're only taking 6 then 3 a day and things are still great for several months. In 2005 I stopped the Colozal altogether and for months I was fine and in great shape. Then, I got very ill with a virus and several weeks later another flare. I lost 1/4 my body weight, major bleeding, pain, high fever, almost lost the colon, and had to go on high doses of steriods and other nasty drugs.

Thanks for this message because I can't let it happen again. Shame, because my sister is urging me to take VSL#3 and get off the med.'s like she did. She swears by the stuff.

I'm staying on the med.'s for sure!

Posted 9/20/2007 6:51 AM (GMT -8)
I stopped taking my asacol and was in remission for 5 years. When I started having symptoms again I called my GI and was back on it immedietly. I had a scope and found that my UC had spread from a mild/moderate left sided to severe pancolitis. My GI said that most likely it wouldn't have gotten so bad had I been on my meds the whole time. Taking the asacol even in remission helps keep the disease from spreading and getting worse. Now I have been in this flare for over a year.

I will never stop my meds again. Just because you feel better doesn't mean there isn't something still going on in your colon.

Taking your meds is a choice. But you need to think about the consequences. Are you willing to risk your UC getting worse?
Posted 9/20/2007 8:09 AM (GMT -8)
no, no, NO! I did the same thing about a year & half ago, felt fine, stopped taking Asacol & tried to use the Rowasa enemas only. Within months I was flaring horribly, & have been flaring ever since. Nothing has gotten it under control- not 3 courses of pred, massive doses of Imuran, Remicade, Asacol, enemas, etc. Right now I'm looking at surgery, & I totally blame myself for stopping the Asacol. My UC was mild to moderate, once I quit the Asacol it's become severe & refractory. And this is at least 3 different GI's telling me this, very competent doctors. Plus i feel like absolute crap & have felt yukky for ages. Don't do it! Stay on the meds- if you're feeling good it means they are working, not that you're in a natural remission.

Posted 9/20/2007 8:11 AM (GMT -8)
Thanks so much, all you kind souls, for the feedback. I think I needed a good old kick in the pants. I'm feeling sorry for myself, I guess. You see, my Mom has had UC for 40 years, and was diagnosed just last week with colon cancer. She took meds faithfully, followed a clean diet, took great care of herself, the whole nine yards. I was not taking my meds for a while at that point, so I figured "what the heck difference does it make?" I know that everyone with IBD doesn't get cancer, but it just seems so sad that no matter what you do, it's not enough in some cases. Thanks for letting me get this out to people who understand.

Dawn
Posted 9/20/2007 11:15 AM (GMT -8)
I was in denial and stopped taking my meds and I have been in a flare since Jan b/c of it (I am classified as mild colitis). I was in denial myself.

my adivce, take your meds.......I wish I had given this adivce to myself and listed to it..........now if only I could go back to the future and play some lottery #'s too.
Posted 9/21/2007 9:36 AM (GMT -8)
Dawn - I'm sorry to hear about your mom's cancer. I completely understand why you are questioning your meds - and probably a lot of life in general. It's part of that grief process. I wouldn't make any changes in meds right now - keep taking what your doc's have prescribed. YOU need to be strong and not sick to help support your mom. Now would be an awful time to flare.

This site is wonderful for giving that kick in the pants when you need it! I still am grateful that Quincy gave one to me when I was hesitant about the Rowasa. I think I'd still be having problems (months later) if I hadn't have used them.

Hang in there! And let us know how things are going!
Posted 9/21/2007 9:40 AM (GMT -8)
"Just because you feel better doesn't mean there isn't something still going on in your colon." THANKS FOR THAT, kb5!!!!!! It expresses perfectly where we all are once the UC diagnosis is made. / Old Hat (nearly 30 yrs with left-sided UC; currently on 6 Colazal daily for July flare in descending colon; should be back in remission again soon)

Posted 9/21/2007 10:26 AM (GMT -8)
Everyone is different so stopping with meds may work for some and not others. I haven't been on meds for months and my condition has improved (no more ulcers) during that time. However, I do follow a strict diet, which I think makes a difference.


Posted 9/21/2007 10:36 AM (GMT -8)

Missmissy said...
I stopped taking the Asacol a couple of months ago, and am wondering if the meds were making my symptoms worse. Any comments?

Maintenance meds or no maintenance meds arguments aside, some people DO have problems with Asacol. See this Web site for some discussion about adverse reactions: http://www.scdiet.org/4faq/asacol.html. If you suspect you may be one of them, you might ask your doctor about switching to the older version Azulfadine/Sulfasalazine.
Posted 9/21/2007 3:10 PM (GMT -8)
Sulfasalazine has asacol in it.., so if one is sensitive to asacol, I would assume one would be to the 5ASA in sulfasalazine.

Side effects of 5ASA can exacerbate some symptoms especially if one starts off with too high a dosage...

Missy..what dosage of Asacol were you on?

The other problem is that if you weren't on both oral and rectal meds, you would still have symptoms and assume it's the Asacol, but it's that there's still inflammation in the rectum/sigmoid that's not being treated enough.

quincy
Posted 9/22/2007 5:57 AM (GMT -8)
ya know what... doctors who dont even know what causes this darn disease really dont know why another flare comes. they say that it is because you stopped your meds because that is all they have to work with. that is the easiest and simpliest explanation for them to give.
i had a flare, was put on mesalazine and it went away for 2 months. i stayed on my mesalazine and i still got another flare. i have had this same flare for over 7 months now. i didnt stop my meds. whats their excuse for this... oh, "they dont know".
they never know. until they find out what causes it, they cant fix it. have you ever wondered why the list of drugs to treat UC is so darn long and has like 30 different drugs on it. because they try these things on you until one of them "works". and so many different things work for so many different people. thats why there are so many different things for us to "try". and half of them are bad for you and have side effects that are the same as UC. wait a sec... i thought i was trying to get rid of the cramping and bloody diarrhea... but thats what happens when you take half these drugs. is it the drug or is it the UC. we dont know... so we keep on putting this crap in our system and "hope" that it works "this time".
i guess there is no real answer to stopping the drugs when you healthy cuz everyone is different and what works for one person doesnt necessarily work the others.
what is a fact is that our livers probably hate us now :(
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