More on Bile Acids (an important piece of the MC puzzle?)

[rcchild@gpcom.net]

Laine,

Thank you for the update! I love to hear from you and others who have had success.

I tried the cholestyramine for 8 days (kept thinking of your earlier post and hated to quit too soon if it was the answer), but after 8 days just had to quit. It made me feel very ill and did not change the D enough. It went from WD to soupy D and more times throughout the day. I really have a hard time taking anything, so it could have been the cholestyramine that made me ill or it could have been the inactive ingredients.

I contacted a compounding pharmacy who will make a prescription of just cholestyramine if I want. My GP has sent in the prescription so I can order it whenever I'm ready. She did the same with bismuth - since pepto bismol does not agree with me either. Both of these products will be expensive through a compounding pharmacy, but so many others have been helped by the Sandoz cholestyramine and Pepto Bismol that I did not want to ignore any of my possible options.

Having said all that, both prescriptions are on hold for the time being. A week ago I started getting regular and frequent treatments from a Quantum Energetics (an alternative practice that moves energy in the body) practitioner and, after the first treatment, I felt a change. Now, after a week, I have no D. I don't know how long this will last or when the WD will come roaring back with a vengeance, but I'm going to enjoy every moment of being D free as long as it lasts! This condition messes with your mind also, so my brain is actually working! Feels good, hope it's not just temporary.

Hope you'll keep posting updates.
Carol C

[Pebbledash]

Very interesting thread, though I have at this point barely skimmed it.

I've been taking cholestyramine religiously for four months (along with maintenance dose of budesonide 1 per day) and it really seems to make a big difference. Interestingly, I also have Addison's disease which means that I don't naturally produce cortisone, as referenced in the very first post.


I've also completely stopped taking Pepto Bismol after years of over-relying on it--to my surprise, I am doing much better without it. I'm also eating yoghurt because I wonder whether too much pepto bismol might have destabilized the balance of bacteria in my digestive tract.

Paul

[tex]

Hi Paul,

In my opinion, there are two reasons why budesonide suppresses inflammation.

1. Budesonide suppresses mast cell populations, thus decreasing mast cell activity.

2. Budesonide is a source of cortisol, so it enhances bile acid reabsorption in the terminal ileum.

One of the big differences between treating MC with budesonide and treating it with cholestyramine is the fact that with budesonide, bile acids are recycled, therefore fat is absorbed (bile turns fat into fatty acids). With cholestramine, most of those fatty acids are sequestered along with the bile, therefore most of the fat in one's diet goes down the toilet. That's why many patients gain weight when using budesonide.

Thanks for the update.

Tex

[dolson]

Y'all know I don't like taking medications. Too many side effects. I have almost zero confidence in the Pharma Companies wanting to get rich at our expense, but I have to say Cholestyramine is a super medication. It works wonders and lowers my cholesterol. A double plus! The first time I took it; I saw positive results immediately!

Don't be scared y'all, it works well with zero side effects. I love this medication! Nuff said. Dorothy

[LydiaS]

[quote="dfpowell"] I have been taking my thyroid meds and supplements in the morning and cholestyramine at noon and every other day at dinner.

Does taking Cholestyramine with a meal decreases the nutrients available to the body?

[HockeyMom]

Well, I just got all my blood work back from my physical and everything was great. I am back to my regular weight after years! Again, I take 8 packets of cholestyramine a day...so I supplement with fat soluble vitamins.

I do take a digestive enzyme and one Betaine HCl with each meal because my poop quality definitely looks better with it. That’s down from 5 Betaine HCl pills....

I take my cholestyramine 2x per day about an hour after meals..maybe this sounds nuts, but I figure that gives the bile acid a little time to do its thing

My hair is great (it did really shed a lot when I was out of control and bottomed out weight wise)..someone asked about this a few months back..never knew it was a deal..

I’m one of those people who don’t mind the gritty TANG drink! Really? If that’s all I have to deal with to have my life back? Where do I sign up ? Ya, I wonder at times if I could do as well with the Welchol pills as that would be easier to deal with, right? Just flying somewhere for 4 or 5 days means I have to take lots of packets of my DRUG with me as a carry on...I flew to Nebraska last month for a funeral and even with a TSA pass, the massive amount of cholestyramine packets that I had in my carryon backpack (because I can’t chance putting it in a checked bag, right?) got me the whole TSA crew coming over for a conference! Geez folks, isn’t this stuff really just some sort of industrial resin? Fortunately they decided that I didn’t look like someone who would use whatever powder was in the sealed packets as an explosive!

Laine