Cholestyramine

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Erica P-G
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Post by Erica P-G »

HI Terre....
I know it has been awhile since anyone commented on this post....but what did you end up doing?

If you stayed on the Questran how did it help/or not help down the road? I was originally Dx the Light and after a week of that I had to ask for the regular kind, so have just started that today.

I'm also reading around on the site to see what kinds of symptoms to watch out for (as I know everyone is different with meds). I have some ringing in the ears but feel I've always had a touch of that ever since MC hit full bore.

Thanks
Erica
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terre
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Post by terre »

Hi Erica,

Here is a summary of what I've been on and what I'm taking currently:

Welchol - Could not take due to side effects

Cholestyramine - Took for 5 weeks, but stopped due to side effects.

Budesonide - Took for approx. 6 weeks, but my new GI doc switched me to Uceris.

He wants me to be on it for three months (which will be 8/18). The last visit he also wanted me to take Xifaxan, but had to stop after three days due to bleeding when I had a BM.

Of everything I have taken, the positive is that they all slow the urgency and frequency, but still D.

I am waiting on my order of ReMag to see if that will help in any way. I so wish I could go into remission....as we all do!

Oh yes, the reason I stopped the Cholestyramine was due to concerns with low vitamin K. I have rosacea and get my nose veins zapped once or twice a year....I've used the same person for years and when she tried to laser the veins they would not blanch and she said something was different and asked what I had changed. I told her about the med and started listing some of the side effects....when I got to depletion of vitamin K....she said she was almost certain that was it. So that visit did no good for my veins and there were some places that I had pretty bad bruising and I have never bruised in this procedure. So, I stopped this med.

Any other questions, just ask away.

Terre
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Erica P-G
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Post by Erica P-G »

Thanks Terre,

Well it appears the Cholestyramine will only be slowing things down then....I wonder in the long run as I discontinue certain 'other' foods that I may not have thought were hindering me if I might see a bit better result as time goes by.

I'm really trying to do some pin pointing at this time since I have basically plateaued. I don't have any urge to go the budesonide route since I know it is temporary, and this is practically temporary too.

I suspect slowing things down, and getting a pattern of when to expect bathroom trips may be as good as it gets taking cholestyramine....this to may or may not be something I take the rest of my life either but only during certain times when I need assurance I can participate in a trip and make plans for things.

The next thing I may focus more on is my personal space and how I am reacting to life...emotions I am noticing can spur up a BM trip, but I'm also noticing that engaging in Play time with my grand kids takes my mind off of myself and I do pretty good for a few hours at a time too. I am getting better sleep these days...it may not always be what keeps me at my best every day but a year into this MC and I can say it is better now.

I've been on the ReMag now for 3 weeks I think....and it is a good product, can't say I'm hitting any remission moments with it. I'm only taking 1/2 teaspoon a day, but am applying oil and taking 3-5 Drs Best internally, plus due to my last VitD levels I'm now on 10,000 IU daily for a few months because I have a gene that doesn't utilize my D very well for me.

Gee that Budesonide 6 weeks and then a switch to Uceris.....I hope you have a plan to take it until you notice constipation and then start a Very Slow taper schedule. I believe this is the critical moment while on this med...I'm rooting for you!
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Post by terre »

I have read several of your posts and know you are diligent in your battle with MC.....I thought at one point you were in remission....but maybe just a lot better.

You are not "supposed" to have to taper the Uceris....it works differently from Entocort (even though both are Budesonide). So, I don't know what to expect when the three months are up. I have read research where approx. 10 to 20% of patients treated with budesonide are nonresponders. I think I must fall into that camp.

I totally get where you're coming from in that it's nice to have a backup plan for trips. I wish you success in figuring out what works for "you"....as it seems the treatments affect all of us differently.

All the best,
Terre
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Erica P-G
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Post by Erica P-G »

Thanks Terre,

Ironically I had gotten to a point where things were clicking and then Spring came, allergies sparked, pollen, the 'busy as a bee' notion and I have been on a search and find mission ever since to help pin point where the 'normal' feeling crumbled.

I'm doing 'ok' but still have mostly D every day, but at predictable times so this is where I'm scratching my head and wondering alot about myself lately. I question lots of things...such as is it diet? is it the weather? is it my hormones? did I just breath or touch something wacky in my environment? I've seriously been on a mission....and until I can come upon an inkling of something tangible I have to keep searching and lot of trial an error in such as this trying of the cholestyramine....so we'll see.

If Uceris works like budesonide then prepare yourself to taper as has been discussed numerous times on this site...I'd hate to see you work so hard to get to a good point for it to blow up because it wasn't allotted enough time ;-) I'm rooting for your well being too!
Hugs
Erifa
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
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Post by Gabes-Apg »

Erica
as I read your 'ponderings above' the article that theorised that multiple intolerances /ongoing inflammation is related to excess toxins comes to mind

ie until your body 'clears' the excess toxins, these being excess metals, bacteria, biotoxins etc etc then you will continue to react to various food ingredients.
with my combo of health issues (mostly non MC) they have gone from chronic to very stable once I did clearing/chelating procotols like fixing methylation cycle AND the things that assist toxin removal like accupuncture etc and cell health with zinc, magnesium, Molybdenum, Vit E, Vit C, Diatomaceous earth etc

i have been kinda doing it for 4-5 years, but more seriously in the last 2.6 years. for me and my combo of 'issues'- follow up testing is showing there is still a way to go with excess metals,
my latest tests were not good the Zinc has dropped badly, iodine still low (despite daily high dose supplementation), B12 low, i have low cholesterol which is confusing us (maybe I have had too much coconut oil) and i have a parasite. my functional doctor and chiro/kinesiologist are totally confused as to why, the combo of issues dont make sense and what we do. I havent had the time to do much research in past weeks due to a temporary gig delivering census forms here in Aus

I say this as I have been on bland eating plan, not added much in pretty much for my 6.5 years or so of the MC journey... only recently have I seen normal poop on a consistent basis. the whole time up to this it was either C or MC mud.
Depending on your lifestyle from birth to now, where you lived, inside toxins, external toxins, water quality etc coupled with what you inherited from parents - as you can be born with toxic metals and chemicals etc if your parents had high exposure in the 10-30 years pre conception**, will give a starting point if this is 'impacting' improvements to wellness. (does this make sense)

ie DDT has a half life of about 15 years
mercury has a half life of 444 years
cadmium has a half life 6-38 years
Dioxins are 7-11 years
Uranium is 4 billion years!
Gabes Ryan

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Post by tex »

Terre,

The reason why prednisone is tapered is because it almost immediately begins to limit the output of the adrenals, so the dose has to be tapered in order to prompt the adrenals to slowly begin working normally again (to produce cortisol).

With conventional budesonide (such as is used in Entocort EC), up to about 21 % of the budesonide can be absorbed into the bloodstream so after a few months it may begin to affect the adrenals. So when Entocort is used for several months or more, the dosage needs to be tapered for the same reason (adrenal function).

The manufacturer claims that none of the budesonide in Uceris is absorbed into the bloodstream. Therefore it is theoretically impossible for it to affect the adrenals. That's why there's no dose tapering requirement when discontinuing a Uceris treatment.

But adrenal functioning is not the main reason why we recommend a slow taper when discontinuing corticosteroid treatments. According to my research, corticosteroids work by exploiting the ability of the active form of vitamin D to suppress mast cell production and activity. Our experience on this board verifies that when a corticosteroid treatment is abruptly ended, mast cell numbers quickly rebound, and when mast cell numbers rapidly increase that typically prompts increased mast cell degranulation. The net result of the increased mast cell activity is the reason why most people suffer a relapse after abruptly ending a corticosteroid treatment.

That said, we don't actually know whether Uceris can cause the same type of rebound effect or not, because to date at least, no one has reported using uceris long enough to cause a rebound problem. As far as I can tell, using it for a few months or less usually doesn't cause any rebound problems, even if the treatment is ended without any taper. Of course some members here have tapered the dose, so that may be why no one has reported any rebound problems with Uceris.

The bottom line is, until someone reports a rebound-related relapse following abruptly ending a Uceris treatment, we may be able to assume that Uceris does not require tapering the dose when ending a treatment.

Tex
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It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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Post by hollyweb »

Dear Gabes,

First of all, I wish you, Erica, Terre and everyone continued healing and wellness. Your post made me wonder about parental exposure to toxins prior to our being born. Many of us have fathers that served in the military overseas (my father served in the Korean War; Annapolis, navy). Both my parents have passed, unfortunately, so I cannot ask them about this. It seems a possibility that the rigors of military life and training, plus living in countries not as well developed at that time (and during a war) might include exposure to all kinds of bio and other toxins.

And of course, it wasn't until the 1970's that my parents had the asbestos removed from our home! And I'm sure there's a lot more things along those lines. Again, we just didn't know the potential toxicity of so much about routine life back then ... until we did know.

Would any of this be considered (in the case of offspring) part of a genetic predisposition towards developing inflammatory conditions? Would this show up on the genetic testing many of you have done? Just curious!

Am so glad you have found your current doctors who are working closely with you and fervently hope the answers you seek are coming soon.

Erica, I haven't started the Cholestyramine yet, so can't provide any feedback on that. I'm still focusing on getting my magnesium levels up first, and having wonderful results with the ReMag. Last night I took my first Dr's Best Chelated Magnesium Glycinate; so far so good. Am sending positive and healing thoughts your way!

Hugs,

~ Holly
2015 Hashimoto's, MTHFR
2016 LMC, Malabsorption
2017 Lymphocytic Dermatologic Vasculitis

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Erica P-G
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Post by Erica P-G »

Just shoot me now....
Erica
as I read your 'ponderings above' the article that theorised that multiple intolerances /ongoing inflammation is related to excess toxins comes to mind

ie until your body 'clears' the excess toxins, these being excess metals, bacteria, biotoxins etc etc then you will continue to react to various food ingredients.
with my combo of health issues (mostly non MC) they have gone from chronic to very stable once I did clearing/chelating procotols like fixing methylation cycle AND the things that assist toxin removal like accupuncture etc and cell health with zinc, magnesium, Molybdenum, Vit E, Vit C, Diatomaceous earth etc

i have been kinda doing it for 4-5 years, but more seriously in the last 2.6 years. for me and my combo of 'issues'- follow up testing is showing there is still a way to go with excess metals,
my latest tests were not good the Zinc has dropped badly, iodine still low (despite daily high dose supplementation), B12 low, i have low cholesterol which is confusing us (maybe I have had too much coconut oil) and i have a parasite. my functional doctor and chiro/kinesiologist are totally confused as to why, the combo of issues dont make sense and what we do. I havent had the time to do much research in past weeks due to a temporary gig delivering census forms here in Aus

I say this as I have been on bland eating plan, not added much in pretty much for my 6.5 years or so of the MC journey... only recently have I seen normal poop on a consistent basis. the whole time up to this it was either C or MC mud.
Depending on your lifestyle from birth to now, where you lived, inside toxins, external toxins, water quality etc coupled with what you inherited from parents - as you can be born with toxic metals and chemicals etc if your parents had high exposure in the 10-30 years pre conception**, will give a starting point if this is 'impacting' improvements to wellness. (does this make sense)

ie DDT has a half life of about 15 years
mercury has a half life of 444 years
cadmium has a half life 6-38 years
Dioxins are 7-11 years
Uranium is 4 billion years!
Really Gabes! those half life's are a real downer....I had mercury fillings (lots of them) from age 10 until just the last couple years when I was able to get them removed. I simply will not live long enough to know if mercury is my culprit....so how does one assist in removing that particular toxin from the body? I also thought VitE was soy....I think I purchased something that was supposed to be soy free in the VitE - so what could be inside that gel tab? That's why I haven't been taking the VitE....guess I was afraid to. Haven't done much VitC like I used to due to sugars and the fact I read that it could contribute to D in some way...so haven't been supping that one either yet.

Can I say that I have been on a 'Afraid-y Cat' syndrome lately!

I wanted to give the cholestyramine a try....then phase over to the Diatomaceous Earth as I feel more comfortable with the Natural scene, so will see if my body wants to respond to this protocol at all. I would be happy over the moon with MC Mud....
Big Hugs to you...
Erica
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Post by Gabes-Apg »

Holly
there is your 'big contribution' to root cause of health issues -
It seems a possibility that the rigors of military life and training, plus living in countries not as well developed at that time (and during a war) might include exposure to all kinds of bio and other toxins.
firstly - mercury would have been huge, as defence personal and families had lots of vaccines etc
if your dad smoked - cadmium is another biggy or the av gas fuel being near aircraft, etc
along with the bacterias and parasites passed on
living on base/bigger cities if there was lots of vehicles with lead petrol etc
this is just for starters -

Defence base toxins is HUGE in the media at the moment. Erin Brokovich is here in Australia at the moment as the PFOS PFOA levels near the Aussie defence bases are way way worse than what was at Hinkley (which started her fame)
air force maintenance workers had contact with lots of nasties that impact health big time

these things dont show up in genetic testing, moreso things like blood, urine and hair testing (which i have done) i mainly did the hair testing as it is the best way to look at mineral ratios for cell health. having good levels of magnesium is ok, but you need the right ratios with other minerals for the cells to be optimised in their functions.

Holly, a bit like me, you were probably born with methylation issues, nutritional deficiences and excess toxins, so we were kinda pushing shi* up hill in the wellness game of life.
that coupled with hard to avoid toxins of the lifestyle/environment of the past 30-40 years... that we are only now becoming aware of, with a few genetic anomolies and you have a body with excess inflammation, multiple health issues, and a body that takes alot of time to heal. (our alice in wonderland adventure!)
Gabes Ryan

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Post by Gabes-Apg »

Really Gabes! those half life's are a real downer....I had mercury fillings (lots of them) from age 10 until just the last couple years when I was able to get them removed. I simply will not live long enough to know if mercury is my culprit....so how does one assist in removing that particular toxin from the body? I also thought VitE was soy....I think I purchased something that was supposed to be soy free in the VitE - so what could be inside that gel tab? That's why I haven't been taking the VitE....guess I was afraid to. Haven't done much VitC like I used to due to sugars and the fact I read that it could contribute to D in some way...so haven't been supping that one either yet.
dont mean to scare/dampen you further but how many vaccines /flu injections have you had over your life? these too have mercury..

ok how do we fix...
Vit E - iHerb have Soy Free Vit E capsules
Vit C - is high in sweet potato, cauliflower etc (doesnt have to be fruit based)
molybdenium

testing
urine or hair mineral testing will indicate Mercury levels (generally via functional practitioner not mainstream and you will have to pay)
in contrast to levels of mercury in the blood, a 24-hour urine sample gives more of an average past history of exposure to metallic or inorganic mercury. Normal urine levels are typically less than 10 mcg/L for someone without risk of occupational exposure.
as there is no 'perfect' or totally accurate testing per say - doing hair mineral testing is best bang for your buck
you will get indicators of toxins and their levels, you will get indicators of your mineral ratios
the one i did in Aus cost me $150
http://www.traceelements.com/LabService ... ports.aspx
profile 2 is the one I did


ok dont get overwhelmed, this is a journey (welcome to alice in wonderland!!) for some of us, we are trying to correct and heal from 40 plus years of toxin overload.
it takes time!! and you know what I am going to say next............... progress not perfection
HUGS Xo
Gabes Ryan

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Post by dfpowell »

Gabes

What brand of Vitamin E is soy free.

Thanks,
Donna

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Post by Gabes-Apg »

now foods
http://au.iherb.com/now-foods-sun-e-400 ... gels/46919

and remember we have food sources like almonds (either via butter, or flour) avocado, kale, coconut oil, broccoli
Gabes Ryan

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Post by terre »

Tex, if Uceris is an extended release tablet and I take one 9mg each day....how does one taper? Would you suggest starting with one every other day (for how many days?), then one every two days (for how many days?), etc......till I run out?

Gabes, very interesting subject. My father was in the air force and in the European theater.....he smoked and he was an alcoholic. Wow, I'm wondering about our next generation that have children born addicted to all types of drugs....raised in meth houses. Wow and Wow!

Why do you think it is that we can be healthy for so many years and then out of nowhere start having autoimmune issues? I remember vividly when mine started....neck injury, then cervical disc fusion, then horrible divorce.....stress out the wazoo. I told someone that I think we are each given a certain stress level and once we hit that threshold, that our bodies just can't take anymore.

Just rambling (except the part to Tex).
Terre
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Post by Gabes-Apg »

Terre
ramble away! it is these ramblings and ponderings that help us (and others)
as the toxin level raises and the key nutrient levels drop, inflammation becomes chronic.
hence the arrival of things like MC,

We posted this article a while ago - it has credibility..
http://qz.com/689806/a-controversial-th ... allergies/

I think this is part of the reason that some MC'ers can attain remission quickly/easily (their toxin level was not as high, they can resolve nutrient deficiencies and heal quicker)
and for others the journey of calming inflammation and attaining wellness takes long and way more inputs.
Gabes Ryan

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