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Do I have to taper off Asacol or can I just stop taking it?

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Ulcerative Colitis
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Posted 11/18/2008 3:43 PM (GMT 0)
My side effects are hair loss and extremely oil skin that leads to acne. Its the acne, at my age, and the subsequently needed maintenance efforts that pisses me off. In fact I can tell the progress of my symptoms by how oily my skin is. The hair loss is not that bad, as I am the beneficiary of a genetic mildly receding hairline anyway, but I can tell (I think) I have more hair in the couple of weeks when I am able to go without the Asacol. Honestly, I guess if I had no side effects and relatively normal BMs I'd happily pay for and take the Asacol forever.
Posted 11/18/2008 7:01 PM (GMT 0)
WeirdBeard - I feel the same way. I don't think its doing anything good or bad as far as I can tell. I've just always hated taking medicine, especially if i don't have to. My real concern about being on meds is whether they might be having a negative side effect that I just don't know about yet. I do know that my periods have gotten kind of screwy since I started taking Asacol. Who knows what that means!
Posted 11/18/2008 11:59 PM (GMT 0)

Cfromutah said...

Kiss, don't worry about symptoms coming back when you quit the med's. I can tell you this first hand because when I first started the diet I was on colazal for about a year prier and continued up until the time when I was feeling better from the diet and then I stopped taking the colazal and had no symptoms from quitting and actually felt a lot better within two days of stopping taken them.It made my mind a lot clearer when I stopped them and had no UC symptoms reappear. I have been completely off meds for 2 and a half years now with absolutley no problems . Don't let people scare you into thinking your going to go into this terrible flare if you stop because its not going to happen. I guarantee you its the diet that's helping you because look at the great track record it already has for the short time its been on this forum and its not going to stop helping you. Its obvious that UC is caused by some sort of deficiency or imbalance in nutrients that this diet provides. Medications are just band aids. This diet gets to the root of the problem.

And, Tom Cruise has entered the building.

Talk to me after you've had 20 years of first hand experience with the ups and downs of this disease. There are no guarantees, and everyone responds differently.

 

Posted 11/19/2008 2:54 AM (GMT 0)

I wasnt talking to you, I was talking to kiss520. You talk to me when you have as much experience as I do with this diet. You would think with 20 years experience with UC that you would have this figured out by now and be in remission such as me.  Its ok though because you will find out soon enough that med's are not needed with this and that there are guarantees.

Post Edited (Cfromutah) : 11/18/2008 11:03:32 PM (GMT-7)

Posted 11/19/2008 2:58 AM (GMT 0)

and people are also very much the same. If you or I or anybody else drinks some whiskey we are all going to get drunk, and if we all take a pain killer its going to kill our pain. We all aren't that different. Maybe with man made substances (medications) we tend to react differently because the body wasn't designed for those but for nutrients from food that the body was designed for we all react pretty much the same.

Post Edited (Cfromutah) : 11/18/2008 10:41:23 PM (GMT-7)

Posted 11/19/2008 3:11 AM (GMT 0)

Oh, and I have been studying nutrition for the last ten years so you come talk to me when you know as much as I know.

Posted 11/19/2008 4:33 AM (GMT 0)
Let's keep it on the positive and supportive side, please.

Everyone needs to remember that they should read and evaluate the suggestions given by all of us here for themselves. Some of it is absolutely accurate information, some fairy tales and a lot somewhere in between. We are all different, and do respond differently to treatments and diets, and each of us has to decide what is best for us as individuals.
Posted 11/19/2008 3:10 PM (GMT 0)
Katie, yeah, I understand about not wanting to take medicine if you don't have to. That is why I am considering buying canned spinach by the case. lol And I am eating more sunflower seeds than the birds at my bird feeder...

inspectorgadget: My hair is getting thinner too. But it's hard to tell if it the meds or the fact that I am just getting older. Haven't had the oiliness problem, though.

C and Peety, you guys are my heros. The input from both of you has been very valuable to me and others on the board. Lets all kiss and make up. :) pleeeease

What a blessing this board is. (Seriously.) I don't think I could do without the support that I get here.
Posted 11/19/2008 3:24 PM (GMT 0)
I totally second what WeirdBeard said. Let's all be pals - we're all just trying to help each other out. When we find something that works, its easy to think that it will work for everyone because we're just SO excited about feeling better and want to spread the word. I never thought I'd be the type to tell others to "try it, try it, try it," but I'm starting to become that way about the spinach/sunflower thing. Sorry if I'm bugging anyone with my fanaticism. On the flip side, I know that a lot of diets that worked for other people have not helped me.
Posted 11/19/2008 5:18 PM (GMT 0)
Katie, you're post could have been written by me last year! I was so frustrated with meds that didn't seem to work! I'm on Asacol now and have tapered down this week from 12/day to 11/day, because I have major fatigue. I'm actually feeling better this week (maybe it's mental?)

I wonder whether your "remission" is the asacol kicking in or the diet changes? How can you be so sure it's the diet? What are you willing to risk to test your theory?

That said, someone had a post with anti-infammatory foods. You may want to find that post. Spinach and sunflower seeds are on it, but so are a number of other foods. It also contains no-no foods, too.

Good luck! Keep us posted!
Posted 11/19/2008 6:03 PM (GMT 0)
hey, just out of curiosity, have any of you on this diet talked with your GI's about it, & the theory behind it, the low magnesium bit? What do they say? To what do they attribute your miraculous results? I think the reason people get heated over this topic is because there's no middle ground- either people think it's the most asinine, ridiculous idea ever, or they think the diet is the ONLY way to go. However you feel, this "And, Tom Cruise has entered the building." is really one of the funniest things I've ever read on here... that statement is right up there!
Posted 11/19/2008 6:21 PM (GMT 0)
Traci - I feel pretty confident its the diet, because I was taking Asacol for a couple months prior to starting the diet, and the Asacol hadn't made any difference in my symptoms. In fact, nothing I've ever taken has made any difference. I will check out that anti-inflammatory foods list, and I'm already doing low-residue which also seems to help a lot.

Eva - At my last appointment my doc asked what I doing that was giving me so much progress. I said, "Now don't laugh, but..." and I told him all about the spinach/sunflower diet (and its basis of magnesium and beta carotene). He didn't comment on the use of those nutrients (probably because he didn't know about any research on them); he just said that some people are lucky enough to find some alternative method that works for them.
Posted 11/19/2008 6:51 PM (GMT 0)
Whatever it is, I hope it keeps up for you! Good luck, Katie! I wish you all the best!
Posted 11/20/2008 6:07 PM (GMT 0)
Kiss520, you will never know if you can go off the drugs and be symptom free unless you try it. Everybody is different. I am not on any maintenance drugs between flares, my GI and I don't see the need for it at this point and I have not yet gone into a horrendous, uncontrollable flare when I stopped taking my meds.

As for the spinach, I guess you could compare it to meds, some work for some people and not for others. The only way to know is to experiment for yourself. I swear by my ceasar salad.

I think if you are not used to fresh lettuce and veggies to take it slow, it takes awhile for digestive systems to adjust to changes.

Good luck, I hope you find something that works for you. Even if it just reduces the symptoms.
Posted 1/13/2009 8:30 PM (GMT 0)

I have a whole different problem. I've been on asacol now since last spring (so for about 6 months). I was on 8 per day for 4 months, then went down to 6 per day for one month, now I'm at the maintenance dose of 4 per day. I am having a reaction, which I'm not positive is tied into asacol, but I'm hoping someone can help me.

I am having these head rushes that feels like I'm freaking out on some kind of illegal drug. Has this happened to anyone else? I know it sounds pretty strange, but it's only been happening since I went down to 4 asacol per day! I have never had 'panic attacks' or anxiety, but that's what I think it would feel like. I get so afraid that I'm going to just die. I have also had indigestion for a week straight, exactly when I cut the dose down, as well.

By the way, the asacol definitely worked for me colitis wise. I appear to be in full remission, and these 'episodes' are freaking me out so much, I feel like I should stop taking it. I also take synthroid for hypothyroidism. I got to thinking that maybe the two meds were reacting together, but why after 6 months of taking asacol, that would happen, makes absolutely NO SENSE at all.

I went to emergency on Saturday, because I was having one of these 'attacks' and they took all sorts of blood and hooked me up to a heart monitor. Everything came back normal, including my thyroid levels, although the doctor gave me a prescription for indigestion meds when he saw my red throat (obviously from increased stomach acid)and my complaint of chest pain/ heartburn.

This is just all so weird. I've never had indigestion before and now these scary head rushes.

Anyone?

Posted 1/13/2009 8:41 PM (GMT 0)
Asacol is a maintenance drug so if it's keeping you in remission then technically you need to stay on it, if you go off of it then expect to flare again shortly after, that's just the way it typically is with having an IBD...you can still flare again while on it but the flare may be easier to control compared to if you're not taking it anymore, espcially if it's what's keeping you in remission.

:)
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