decision to not take medication?

Research shows that it is better to take the maintenance meds than to not take them. While you think you might be avoiding stronger drugs in the future, by not taking them you are actually increaseing your risk of having to take stronger meds in the future. Inflammation is the root of evil with UC/UP and keeping it in check should be your #1 priority. I'm not of the belief that diet and supplements can accomplish this but there are many who believe it can.

Sue

My GI has stated that as long as I don't have symptoms, then there is no need to take meds.  The meds just control inflammation, they are curing, so to me, it would be like staying on cold meds all the time to control getting a cold.

love4cats said...
My GI has stated that as long as I don't have symptoms, then there is no need to take meds. The meds just control inflammation, they are curing, so to me, it would be like staying on cold meds all the time to control getting a cold.

I suppose he would wait until someone had a heart attack before he addressed cardiovascular disease too? Same concept. Symptoms are a horrible way to go about determining health.

You are all confusing me.  Does the doctor believe no meds if there are no symptoms?  Right now I am doing ok like jerkygirl - no urgency - 2 or 3 BMs each morning - formed but with blood and mucous.  I have a little left sided discomfort from time to time but also have IBS.  Both my doctors took me off all medication because I cannot tolerate them.  WE ALL seem to believe now that it is mostly the additives in the medications (propellants in foam, etc.) that I cannot tolerate.  I used Cortifoam 2 to 3 times a day for a couple weeks and just got worse - more pain than anything in pelvic area which went away as soon as I stopped the foam.  5 ASA's give me flu  like symptoms - continually getting worse.  I took prednisone for nearly 6 months and have tapered off and feeling better but not good.  I know if I flare badly I am back on prednisone - the choices are too limited for me.

BUT - having said all that for me - I think those of you who can stay on Asacol or LIalda for maintenance should do so. I think Colazal and proctofoam helped my UC but side effects I could not live with.

ElaineNY 

jerkygirl..you're flaring and its best to treat it. I would suggest you start with the 5ASA meds...so the research and make an informed decision.

As well...understand what they really do and why maintenance meds are helpful.

Yes, they treat the symptoms because it's an autoimmune reaction. if you want to remain in an inflamed state, that's definitely your decision, but you do risk it spreading upward.

A bit of prevention helps if in fact yours might spread...not all do.

In saying all this, some low in the rectum IBDs are very difficult to treat and patients become pretty immune to any treatments...

sucks for sure...no one wants to use meds.

q

love4cats said...
My GI has stated that as long as I don't have symptoms, then there is no need to take meds. The meds just control inflammation, they are curing, so to me, it would be like staying on cold meds all the time to control getting a cold.

I agree.

The kidneys only last so long. My son-in-law's grandfather just died of kidney failure a couple days ago. He was in perfect health until a couple of months ago when he fell. He started retaining water; so his family took him to the hospital. The doctors found out that he was retaining water in his lungs. They checked for heart failure. His heart was fine. They checked for lung cancer. No evidence of cancer. They then said it probably was his kidneys. However, he was 96. Too old for surgery. So they didn't do much to help him.

I agree. If the colon isn't inflamed, then why take maintenance medicines that reduce inflammation? If you have no symptoms of flaring and are still worried that you could be flaring and not know it, then you can be on an anti-inflammatory diet. Some ingredients, such as turmeric, reduce inflammation without hurting the body. Why not add turmeric to some of your foods?

subdued said...
I agree. If the colon isn't inflamed, then why take maintenance medicines that reduce inflammation? If you have no symptoms of flaring and are still worried that you could be flaring and not know it, then you can be on an anti-inflammatory diet. Some ingredients, such as turmeric, reduce inflammation without hurting the body. Why not add turmeric to some of your foods?

You can have inflammation and no symptoms. If you are ruling out the inflammation with colonoscopy I agree with ya.

ickypoo, that wasn't unfair at all. I never said meds were the only way to treat this, but you can't sit back and wait for a flare before you worry about your disease. I mean, I guess you can, but you would suffer on down the road for it. I didn't read that love4cats doc was giving her alternative recommendations? Since most GI's (at least everyone I have ever seen) don't think diet affects the disease, or that anything alternative helps, I am assuming the doc just turned her loose until she gets a symptom.

To the OP, there are alot of different things to try to naturally keep things quiet. I think the vitamin E enemas are pretty effective, especially with UP. Sorta wish I had known about those back when I first got started in this whole thing and I just had UP. It's trial and error, just don't trial yourself too much and get worse.

I would be extremely happy if anything I try puts me in remission.  Except for the two weeks on prednisone 40 mg. (bleeding stopped after 5 days) I have been flaring since diagnosed and before - May, 2008.  Almost every day blood and mucous - some worse, some better. My blood work is always normal. 

I thought 6 MP might help so I could go off prednisone but it was found to be not working at 50 mg. and I could not tolerate 75 mg. even though I tried 10 days twice! 

So, if you can take medications, use enemas, suppositories, whatever works for you - do it - get into remission and then decide about maintenance.  Maybe you won't need it if you choose that route.  Right now I am not on any meds and having mostly bad days - not diarrhea, not lots of BM's but nausea every morning with cramping, blood and mucous - exactly what sent me to the doctor over a year ago.  Like I never tried anything - had three scopes in that time - all showed inflammation - mostly proctites and 30 cm. up left side.  IBS is not helping.  I will contact my new specialist as he is the one who took me off the rectal meds.  I was in so much pain from them all around me in pelvic area. 

ElaineNY

I was exactly like you a few years ago and stopped my meds. A few months went by where I was ok, not great but not terrible. After some stress in my life, things went downhill extremely quickly. Before you know it, my one trip to the bathroom a day turned into 2, then 3, then 5, next thing you know I was running to the toilet 15x a day with severe cramping and anemia. Mild cases can and do get worse. Not always but mine did. I wish I had been able to afford the medication I needed instead of ending up in the situation where I allowed much more of my intenstines to flare up and now it feels like I am fighting off a massive flare all the time.

fruitgirl said...
Elaine, that's what I think love4cats doctor is saying...that there's no need for meds if there are no symptoms. I know you wish you could use the meds...it really sucks that you can't! You seem to be a pretty rare case, though! :)

This isn't a a good thing to believe, IMO. The meds help keep the inflammation from coming back, too. So, if you stop them, there's a much higher chance that it will come back. I've heard WAY too many stories about people who quit taking the 5ASA meds b/c they felt so good, only to have the symptoms come back worse than they ever were before, and then the 5ASAs didn't work any more and they had to move on to a stronger drug. So, that's why I'll always take my 5ASAs. If I can avoid 6MP, Remicade, etc, all the better!

Fruitgirl-this is exactly what happened to me.  I had a pretty crappy GI doc initially, and she didn't explain any of this kind of thing to me.  I was diagnosed with a mild case, symptoms were almost gone even before diagnosis actually, was put on Colazol, ended up in remission extremely quickly, so I quit the meds.  Before too long, stress came into our lives, I started having problems again, but this time the meds didn't do it.  I tried at that point to manage things "naturally" and wound up in the hospital and now have been told I have a severe case (while my first GI doc told me UC didn't get worse-that it was limited to your initial diagnosis, and could get better but not worse-nitwit) and am on much stronger meds, most likely for life.  Had I known, i would have stayed on the colazol, and maybe that would be the only thing I ended up having to take!  Who knows...

At any rate, I wouldn't go off of the maintenance meds.  I know people who can start and stop, but it didn't work that way for me, and I wouldn't wish what happened to me on anyone!

Dr-A said...
ickypoo, that wasn't unfair at all. I never said meds were the only way to treat this, but you can't sit back and wait for a flare before you worry about your disease. I mean, I guess you can, but you would suffer on down the road for it. I didn't read that love4cats doc was giving her alternative recommendations? Since most GI's (at least everyone I have ever seen) don't think diet affects the disease, or that anything alternative helps, I am assuming the doc just turned her loose until she gets a symptom.

I didn't mean to put words in your mouth - I agree that waiting for a flare is not the best way to proceed.

But that may not have been the rationale of the GI in question. The key word in your reply is 'assuming'. Neither of us knows what he or she was thinking. There may have been a perfectly good reason for not insisting on meds while being asymptomatic - especially if no inflammation is present.

love4cats said...
Dr A:

Heart disease can't be compared to UC, it is permanent unlike UC which normally shows itself in way of flares. If the immune system is not attacking the colon, then to take meds to stop inflammation is useless. Like a coldsore, do you put meds on your lips while you are in remission, no. How about cancer, do you take chemo while you are in remission?

Even while on meds, your UC can spread, it just depends on your immune system and where it wants to attack.

As some people know, you can take meds until you are blue in the face but it doesn't control their symptoms and the only cure is to have their colon removed.

Heart disease isn't permanent. Cold sores, well some people do take meds to help before they get a problem (Valtrex). I'll give you the cancer one though, you don't take chemo if its in remission, probably why I didn't use that example. My point, you can have no symptoms going on and still have inflammation, or any other bad health condition. In general, waiting for a symptom before making a decision to address the problem is a bad way to take care of your health no matter what comparison you are using. We could start another thread on that if anyone wanted to, lol.

I assumed (we all know what that does) you didn't have a colonoscopy to base your inflammation on. Was your GI was basing your inflammation on symptoms? Thats how your post reads anyway. I won't post anymore on this in this thread anyway. Not beneficial to the OP.