Seems everything that heals UC is bad for you...

Has anyone every realized that the few meds/options that really relieve "most" of their symptoms are bad for you? 

Prednisone has been the only med that has fully made me feel "normal", yet its one of the worst meds you could be on...also smoking, I've hear that smoking and nicotine have been life saviors for most, yet we know the issues with smoking!!

Why can't these billion dollar drug companies make a med that treats or works like Prednisone, yet does not have the harmful side affects...prednisons is obviously the one drug that wokrs for almost everyone...

Makes sense to me!

It is sad for sure.  I am thinking of asking my doctor if I can go back on prednisone.  I feel miserable - spasms, etc. etc.  Rectal meds are not doing much and I have to take Imodium and Tylenol just to function.

YUCK on this disease!  ElaineNY

They could clearly make better meds with little to no side-effects but what fun would that be for the drug makers, I'm convinced they see the world of the ill as "ha ha ha, lets help a little bit with their main complaints but give them new things to complain about" the joke is on the ill, there's no doubt about it...look at viagra for example (give a man back his sex drive but make him blind in the process)...typical of the world we live in.

:)

This all reminds me of a quote spoken by my dad: 'You fix your face and your ass falls off.'

I wish people like us would go into these lines of work and revolutionize the way we handle meds. I'll keep dreaming...

Lonnie...I was on and off the 5-ASA (oral/rectal) in the first 3 years but have been on them basically as maintenance since then.

The enemas I increase at the first symptoms of a flare (very mild which some may see as a blip) and taper. So I've not been on them nightly for 20 years.

The Asacol, however, I've been on 6 daily for pretty much the entire time. Once I upped to 8 for about 6 months.

I'm so far colon cancer free....I also have PSC which is a UC-related liver disease. My belief is that keeping the UC nice and calm will help prevent the increased chance of cancer as well as keep the liver disease in early stages.

I function and my colon isn't the main concern of my issues. Iut when it's not behaving, it just adds to the issues and I deal with things as early as possible.

So far, it's a miracle med to me....

q

Asacol and Rowasa have helped me tremendously. I was in a severe flare and those two meds alone pulled me nearly completely out of it. It did take some time, though the Asacol worked pretty quickly.

I love your analogy, LuckyLIndy. That was great. So do you think the drugs are bad for us because they aren't actually fixing the root of the problem, just the symptoms?

I don't agree with the earlier insinuations that drug companies purposely make drugs have side effects. People would be more likely to take their product if it did not cause side effects.

princesa - What are some good sources of Omega-3s for vegetarians? I think nuts have some, right? Flaxseed oil? What would you suggest?

Sara14 said...
I love your analogy, LuckyLIndy. That was great. So do you think the drugs are bad for us because they aren't actually fixing the root of the problem, just the symptoms?

I don't agree with the earlier insinuations that drug companies purposely make drugs have side effects. People would be more likely to take their product if it did not cause side effects.

princesa - What are some good sources of Omega-3s for vegetarians? I think nuts have some, right? Flaxseed oil? What would you suggest?

"bad for us" is all relative. Sure, if we knew the root cause of the problem (and could "fix" it), current drugs would seem barbaric. But we have to work with what we have, and weigh the pros/cons. To continue my earlier analogy, some of the drugs may hurt Mike Tyson a bit, but the alternative of having the band geek pummeled to a pulp isn't realistic.

I also don't agree that drug companies are purposing making drugs with bad side effects. It's horrible business, and sets them up for competitive pressures later (since some company would eventually be able to make the same drug without side effects and steal market share).

Regarding Omega-3's, you really only have two good common vegetarian sources:
- Flaxseed oil (not just the flax)
- Walnuts

Most other vegetarian foods with Omega-3's have a low ratio of Omega 3 to Omega 6's, even oils we typically consider "good" (Olive oil for example). A few less common oils include Chia and Kiwifruit oil, both are similar in effectiveness to Flaxseed oil but hard to obtain. But none of them have anywhere CLOSE to the amount of Omega-3's as fish oil caplets, and the good fish oil caplets have them in a ratio that cannot be met by vegetarian sources. This ratio is what's important ... for example, many nuts (peanuts in particular) are pro-inflammatory since they have a high ratio of Omega-6 to Omega-3's (opposite of what you want).

If you're willing to stretch your vegetarian diet a TINY bit, fish oil would be a great addition. Some studies have shown the 4g+ of fish oil per day (4-8 pills) is more effective in preventing UC relapse than Asacol, and that it reduces symptoms and need for anti-inflammatory drugs. Flaxseed Oil has not shown the same level of anti-inflammatory benefits in trials, although there haven't been as many studies.

I just searched and couldn't specifically find the study vs. asacol to which I earlier referred, but thought these references would be of interest to you:

http://www.oilofpisces.com/inflammatoryboweldisease.html

http://ibdcrohns.about.com/cs/alternremedies/a/fishoilibd.htm

Tons more out there ... if you're opposed to fish oil though, definitely take some flaxseed oil.

pb4 said...
You think it's that simple??? You forget that drug makers have patents on their meds so they can do whatever the heck they want with their concoctions and if they create meds with side-effects then more money for them in the long run when you end up having to take meds down the road due to the side-effects from the previous, it's a viscious circle where they benefit and patients don't.

)

Patents only last 17 years, which usually means a drug is only protected on the market for ~10 years before competitors start producing generic versions. It's easy to feel disgust and anger towards the pharma industry, but purposefully creating drugs with side effects is counter-intuitive to their goal of making lots of money.

Also, many of the smaller drug companies have no possibility for an ulterior motive since they wouldn't sell the drugs to counter the side effects ... yet these "boutique" drug makers and bio/genetic pharma companies churn out drugs with nasty side effects as well.

It really is simple - if you create a drug that attacks the body, the body will almost always fight back. Our body is regulated by feedback loops. The only potent drugs that lack serious side effects are those that attack foreign objects (antivirals, antibiotics, etc) since those drugs help the body instead of fighting against it.

That said - I do believe that drug companies are far more interested in finding treatments than cures. It's realistic to think that a cure for UC, Crohn's, Cancer, Heart Disease, etc are all possible within the next 20 years ... if drug companies cared to invest HEAVILY in curative research. But they won't, because there's far less money in curing someone than treating them.

pb4 - I don't doubt you there ... once politicians get their hands out of stem cell research I think it holds great promise.

LuckyLindy said...
pb4 - I don't doubt you there ... once politicians get their hands out of stem cell research I think it holds great promise.

Another reason why I'm glad to be canadian, we're already doing a stem cell therapy on a woman who lives near me that suffers with MS, because it's promissing results of 80% who've been treated with stem cell therapy for their MS have had ALL their MS symptoms come to a halt.  Stem cells taken from our own bodies means no contraversy.

 

:)

Stem cells differ from other kinds of cells in the body. All stem cells, regardless of their source have three general properties: they are capable of dividing and renewing themselves for long periods, they are unspecialized, and they can give rise to specialized cell types.

Stem cells are capable of dividing and renewing themselves for long periods. Unlike muscle cells, blood cells, or nerve cells which do not normally replicate themselves, stem cells may replicate many times, or proliferate. A starting population of stem cells that proliferates for many months in the laboratory can yield millions of cells. If the resulting cells continue to be unspecialized, like the parent stem cells, the cells are said to be capable of long-term self-renewal (The ability of stem cells to replicate themselves by dividing into the same non-specialized cell type over long periods (many months to years) depending on the specific type of stem cell.

I don't know if it's something that would have to be done for example every 10 yrs or something (I'm sure this still needs to be investigated), but I know with the MS lady that will soon be getting her treatment they will be wiping out 80% of her immune system and re-establishing it with stem cells for her specific treatment.


:)