Cholestyramine

[suzieq]

Hi all,

I have been on budesonide, mostly on than off, for most of 2020 and so far I'm on budesonide for all but 6 weeks in 2021. My GI dr. just added cholestyramine light to my regime, 4 scoops a day in addition to 9 mg of budesonide a day. Because of the different medications I take & the timing of when to take the cholestyramine, this only allows me to take 2 scoops a day. Unfortunately it leaves me very nauseous leaving me unable to eat. Will this go away? I have had formed bm's for the past 2 days, so that's a plus. Any advice on taking the cholestyramine?

As for my chronic colitis flares, I had attributed it to stress from the pandemic and life in general and I started taking anxiety medication, I meditate and do tai chi breathing exercises everyday. I thought it was all helping but it obviously isn't. I'm gf, cf, ef and sf. My colonoscopy in January of 2020 showed active collagenous colitis and it's still around. After 10 years, I still don't have my s**t together on dealing with this chronic nuisance disease. MY GI dr wants me to consider Entyvio but I can't afford the price tag, it's expensive on Medicare/supplemental ins. and I don't like what I read about it. My recent bone density scan wasn't good and I see a Rheumatologist in August. I was on Fosamax for 8 years and have had at least 4 Reclast infusions. I don't know what's next with that.

Thanks for listening, any advice would be appreciated.

Susanne

[HockeyMom]

If you are telling me that it appears that the cholestyramine is giving you solid bm’s at 4 packets once a day, then leave well enough alone. I take 4 packets twice a day.

And as far as I’m concerned ( as someone with collagenous colitis by biopsy)....if the Budesonide wasn’t doing it for you...and the doc added cholestyramine to the mix...and now you have solid bm’s...then maybe you don’t need the Budesonide at all. Maybe you truly have bile acid issues. You may need to experiment with the dosage ..and get creative with the timing of your other meds.

Laine

[HockeyMom]

PS....

I take cholestyramine about an hour AFTER meals. It can make you bloaty initially but that went away. As everyone here will tell you, magnesium deficiency leads to anxiety. And funny enough, being deficient with stomach acid and the cascade of how that effects your digestion/malabsorption of nutrients also leads to ANXIETY So, Betaine HCl was also on the menu with meals...in huge servings for awhile

I get it....been there, done that in a big way. Private message me if you want.

Laine

[Gabes-Apg]

Suzie
what dosage of Vit D3 are you taking?? And are you taking it well away from the cholestryamine

cholestryamine does deplete these types of nutrients

[suzieq]

Hockeymom and Gabes, thank you for your replies. My Dr added the cholestyramine because after about 5 weeks on 9 mg a day on budesonide I still wasn't having normal bm's. Now I am after 3 days on it with just 2 doses but I have to fine tune when I take prescriptions/supplements to get the 4 scoops a day in.

When I get up I immediately take levothyroxine. After an hour & after breakfast I take allegra, lexapro, 10,000 IU's of D3, calcium and the budesonide. I now take the 1st dose of cholestyramine right after lunch, 4+ hours after the cholestyramine. I was taking the 2nd dose of cholestyramine 1 hour before dinner but I get so nauseous I can't eat. With dinner I take a multi vitamin and L-Glutamine and about 8 pm I take flexiril for fibromyalgia. I've been taking some of these meds for so long, starting just before the collagenous colitis so rudely made it presence known, I'd like to discontinue them all and see what happens. My husband would like me to see a functional/holistic Dr. because he helped a friend of his, but he had a different problem. It's not covered by insurance and it can costs a lot of $$$.

Thanks again for your suggestions.

Susanne

[tex]

Susanne,

I agree with your hesitancy on the holistic and naturopathic treatments. This is just my opinion, and many will disagree with me, but I believe they charge patients way too much, for the privilege of prescribing way too many medications that their patients don't need. Less is more when treating MC. The less variety we put into our mouths, the better our chances of reaching remission, and staying there.

Of course, MDs are even worse about charging way too much to prescribe medications that only work temporarily, or in conjunction with diet restrictions. That said, holistic/functional doctors have a reasonably good reputation of bringing relief for many patients, for various issues. Often, though, that relief is brought about in spite of too many medications/supplements, not because of them.

If I were in your situation, I'd give serious thought to seeing if I could get by get by without the Allegra, Lexipro, Calcium, and Flexiril. Long term use of antihistamines depletes diamine oxidase (DAO) enzyme, and increasing your magnesium intake should eliminate your need for the others. We all have more than enough calcium in our diets, no matter how restricted they might seem, if we have enough magnesium in our bodies for all our organs to function normally. Magnesium is a vital electrolyte, and MC depletes it. Adequate magnesium in circulation in our bloodstream is essential in order for insulin to be able to transport the calcium in our diet to our bones and other organs where it's needed. Magnesium is also needed in order to convert the vitamin D we take into the active form, so that our immune system can use it Without adequate magnesium, it doesn't matter how much calcium we ingest — we can't utilize any of it without adequate magnesium.

I hope this helps.

Tex

[Gabes-Apg]

Tex pretty much said what I was going to.

skip the calcium, increase the magnesium.
you may need more VIt d3 but magnesium is more important at this stage


on a side note - functional practitioners are the ones that gave me my life back. i managed to find the 1 - 500 that knew their stuff (gut, methylation, hormones, immune system, cell health etc) and that stat of 1-500 which is probably about the same rate as good medical practitioners in mainstream medicine

there was no quick fix, the process took about 2 years.
these practitioners are so good people travel 2-3 hours to see them.
agreed it was not cheap - albeit to go from being on temporary disability - multiple auto immune flaring and causing me major issues, unable to work to now working full time with minimal symptoms the investment was well worth it.

[HockeyMom]

The cholestyramine is supposedly ok ONE HOUR AFTER meds/supplements, etc. The 4 hour thing is 4 hours AFTER TAKING cholestyramine . So you only need to wait one hour after breakfast and all that stuff...to let your meds and supplements SOAK IN before taking the cholestyramine . And then you are ok taking meds and such 4 hours after you do cholestyramine. Does that make your schedule any easier?

In my mind it makes sense to take cholestyramine after meals if my body is going to release bile acid to break down food I just ate or ate an hour ago. Taking cholestyramine on an empty stomach doesn’t make much sense to me. And believe me, I tried that few years ago when I was floundering round with it. I do better with it after food. Try it out.

Laine

[Pebbledash]

Just to support what Laine said. Moving the cholestyramine to straight after my main meal made all the difference to me, both in terms of its efficacy and in terms of mitigating interference with other meds. I am now able to take it just once a day after my main big meal in the evening, and it works great.

Cheers,
Paul