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Cholestyramine questions

 
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Sue777
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PostPosted: Mon Jan 08, 2018 9:12 am    Post subject: Cholestyramine questions Reply with quote

Hi Team.
I have a few questions (well, lots actually, but I'll try not to throw too many at you at one time) about cholestyramine. I did do a search and I have read all the posts and threads about it so I apologize in advance if I missed anything that's already been discussed.

I asked my doc for a script last Friday so I could try it and he agreed. He recommended 4 grams once a day but being cautious, I took 2 grams that night. Since the sky didn't fall, I took 2 grams Saturday afternoon and 2 more grams Saturday evening. And then last night I took 2 grams again (not sure why, wasn't thinking - should have taken 4).

1. Since this can interfere with absorption of other things, timing is tricky, so I think I'm going to always take it before bed. But I, of course, want to know how and why this stuff works (if it does) so I can understand if "before bed" really is the best time to take it. What is the half-life of this stuff? I read that it stays in your intestinal tract, but of course it can't stay there forever. Does it work at absorbing any acids that are there as soon as you take it, or does it take hours for it to start absorbing acid? Does it keep absorbing through the entire next day, or should I take two or three doses a day to keep a consistent level in my gut?

2. I might be doing a tad better this morning (diarrhea wise) but wow do I have bloating and gas pains. I read that's a common side effect but I wonder if that's something I should wait out in the hopes that gets better or if that's a sign that it's doing damage to my lining and I need to stop taking it? If I need to wait it out and let this side effect pass (pun intended) I'm fine with that, as long as I know I'm not making things worse.

3. Not sure where I read it (here or in Wayne's book) but it seems even people who do have success with cholestyramine don't have long term success. It works until it doesn't. Wondering why that is and/or hoping it's not true.

OK, that's enough for now, but you KNOW I'll be back with more. :)
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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tex
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2018 Jan 21 - 8:54 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Mon Jan 08, 2018 10:54 pm    Post subject: Reply with quote

Sue,

I was hoping someone else would respond because I don't have any experience with this stuff, so I can't offer any advise on the bloating and gas. When "they" say it stays in your digestive tract they simply are trying to say that you won't absorb any of it. It will be purged right on schedule along with the rest of the stuff in there according to your motility. It's active and ready to go to work when you swallow it, and it will continue to bind things until you purge it according to your current turnaround time. IOW, it has to be replaced in roughly 2430 hours or less, or whatever your normal turnaround time might be.

It shouldn't be able to do any damage to your epithelial lining because it's basically pretty inert stuff.

I hope it wasn't me who said that cholestyramine has a limited period of effectiveness. But then I might have pointed out that the human body is very adaptive and it can get used to almost anything. And along with that it learns to compensate, which means that in the long-term it may adapt to limit the effectiveness of some/many medications if it perceives it/them as adverse. But I really don't know if cholestyramine is one of them (or maybe I've forgotten). shrug

Tex
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Sue777
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PostPosted: Tue Jan 09, 2018 12:37 pm    Post subject: Reply with quote

Thanks, Tex.
Your explanations and theories make sense, as they always do.

Yesterday was a horrible day.... I barely got to work because I couldn't get out of the bathroom and once I got there I was dashing to the ladies room constantly. When I went home to try to eat something, I had to put on protective undergarments to go back and for the first time, I actually brought a spare set of clothes with me to the office. I stayed about 30 minutes, threw in the towel, and took my laptop and went home. I'm working from home today, too, but am SO MUCH BETTER.

Why, you ask? could be one of two things: when I got home from the office yesterday I took two Entocort. It's the only thing that has ever worked to get me out of a flare. I also took an Immodium. AND... I skipped the cholestyramine last night.

I think the cholestyramine was producing the bloating and gas which is not a good thing when you have colitis (as you know). I can't believe the Entocort could have helped already, but something has. Of course I haven't eaten yet today, either, but will attempt that in a few minutes and see how long I can keep the food in my system.

Thanks for replying - I guess there aren't many cholestyramine users that are still active on this forum. Maybe that's a good thing for them - means it's working!
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Gabes-Apg
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Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Tue Jan 09, 2018 1:50 pm    Post subject: Reply with quote

Sue
maybe doing a search for the previous discussions about cholestryamine and see what others have shared.

bloating and gas is not unusual during the healing stage. taking something like cholestryamine changes the digestion chemical structure big time. it is also a binder of toxins, (it is usesd by those with bacteria / fungal /mould issues) so it can also cause imbalance with good bacteria.

my observation of people here that have used cholestryamine, it is similar to other meds for MC;
- some have good long term success
- some get short term success that fades
- others can not tolerate it at all.

there is no way of knowing if it will work until you try it.
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Sue777
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PostPosted: Tue Jan 09, 2018 1:59 pm    Post subject: Reply with quote

Thanks, Gabes. I did do a search and read all the threads I found before posting my questions. But you know me - I always want more. :)

Yes, as with most things, it's trial and error, won't know till you try, etc. We are all human guinea pigs in our quest to heal ourselves.

Thanks for the reply.
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Gabes-Apg
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Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Tue Jan 09, 2018 2:25 pm    Post subject: Reply with quote

Quote:
always want more

maybe that is part of your issue, wanting more, wanting improvements faster, overthinking, over researching,

maybe it is time to just be, let the bad days happen, give the body a bit of time, calm the mind a bit, be at peace with some of the messiness that is happening.
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"Anything that contradicts experience and logic should be abandoned"
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Erica P-G
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Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Tue Jan 09, 2018 2:44 pm    Post subject: Reply with quote

HI Sue,

Gas and bloating.....one has to take the original version of Cholestyramine real sugar not the sugarless one....the sugarless one gave me worse gut symptoms.

Then on the real stuff, it took a good 21-28 days before my body got into a rhythm and the bile salts were absorbed properly etc....yes it took that long, if I was having other body issues it was because of stress, diet or a myriad of other things.

I took my cholestyramine 2 hours after I ate breakfast in the morning ....so I ate at 6:00 am and I took the cholest at 8:00 am just before I headed to work, I ate again at noon...then I would eat at a good time 6 ish at night and and take the cholest at 8 ish about an hour before bed so that I could go to the bathroom and not worry about waking in the middle of the night to pee.

In between the hours of 8 am and 8 pm I would take my magnesium and VitD at 6 am when I ate....then I would take my mag again at noon that is 4 hours after the cholest....that is the trick right there you have to give proper time after taking it so that it doesn't collect your supplements :-) then I would take my mag one more time at dinner time....at this point I had satisfied my supplement regimen :-)

If you haven't given yourself a good long stretch of time on the cholestyramine I don't feel it has had the time necessary to perform like it does. I was on it for a good 7-8 months after it started performing and I was able to get a good bit of healing under my belt that I no longer take it unless I get a flare that I can't seem to get under control. Then I know I need to be diligent once more with a good 15-21 days to get the healing to take effect once more and give the gut a rest. So far I've only had to do that once since January 2017. I'm doing so much better now days. I'm not perfect either, and there are days that norman just disappears for a brief 2-3 days and then comes back again, I don't run to the cholestyramine when those episodes happen, lol. But I would if I couldn't get a week situation under control at this point in my healing.

Good luck with the cholest....if it doesn't work after taking it for the alloted 21 days then perhaps your healing situation needs a bit more tweaking and time....the cholest comes into play after one has exhausted everything they have been taught to try and look into from this forum first....that is where I was, I plateaued and felt I was just at the turning point of healing....then the cholest helped me get the rest of the way.
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Sue777
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PostPosted: Tue Jan 09, 2018 4:24 pm    Post subject: Reply with quote

Thanks for the reminder, Gabes.... that's probably the best piece of non-medical device a person could receive. Actually it could be considered medical advice as well. When I was talking to my Higher Powers the other day asking "OK, guys... what lesson is it you're trying to teach me from this - what haven't I learned yet that you want me to?" The answer I got was that I don't need to have an answer to everything - some things I just need to "accept".

Erica, that's also good advice. Do you have a gallbladder? it almost seems cholestyramine is a wonder drug for those that don't but not so helpful for those who do. All I know is that Sunday and Monday were horrendous diarrhea days (even wore protective undergarments to the office yesterday and brought a spare set of clothes) so I gave my body a break and didn't take the cholestyramine last night. Today? I haven't gone at all. Amazing how much can change in 24 hours.

The quest continues....
Sue
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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Erica P-G
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Food Intolerances : Gluten, Dairy, Eggs, Soy, Tuna, Beef, Oat, Almonds, Walnuts
Location: WA State

PostPosted: Tue Jan 09, 2018 4:32 pm    Post subject: Reply with quote

HI Sue,
yes I have my gall bladder....an I have to place myself in the most healthy normal body situation pre MC....I don't suffer from any other autoimmune things...I still have my tonsils even. MC hit me out of the blue...but I think stress set it off and I think my body was working up to something because I have always been a picky eater and there were foods I would try to eat years before the MC came to fruition and I didn't like them or knew they weren't making me feel that great but couldn't put my finger on just what it was until now.

Every one is different.....and perhaps this just isn't the right timing for you to try this aspect of healing. That's ok Wink

Until you find the food choices that are safe for you and you get to a stable place that feels good for a while only then will you know if you should even try cholestyramine....it will be evident because you keep passing yellow bile in your bathroom breaks and it may even give a bit of a burning sensation on the bum due to it...then it wouldn't hurt to try the cholest protocol. Until then carry on and get to a good place first.
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To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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Sue777
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PostPosted: Tue Jan 09, 2018 4:40 pm    Post subject: Reply with quote

Erica P-G wrote:


Every one is different.....and perhaps this just isn't the right timing for you to try this aspect of healing. That's ok Wink

Until you find the food choices that are safe for you and you get to a stable place that feels good for a while only then will you know if you should even try cholestyramine....it will be evident because you keep passing yellow bile in your bathroom breaks and it may even give a bit of a burning sensation on the bum due to it...then it wouldn't hurt to try the cholest protocol. Until then carry on and get to a good place first.


bouqueofpinkroses
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Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
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