Bile Acid Binders that AREN'T Cholestyramine...Any Success Stories out There?

[HockeyMom]

Ahoy Potty People-

I'm aware of different bile acid binders that come in pill form (Welchol comes to mind)..I was wondering if anyone has success with these..and if so, where in this big world do you live? And how much of it do you have to take a day?

I would love to be able to suck down a few pills instead of having to deal with a powder dissolved in liquid. Traveling with the number of packets I have to carry with me is a chore. And TSA in Phoenix actually wiped down a bunch of my packets a couple years ago because, ya, I guess I look like some sort of terrorist type who just might mix up some kind of explosive device with all the powder in those packets in that big Ziploc bag!! I realize that my biggest problem as far as TSA goes is how much of it I'm carrying with me.

Once I retire in a few years and I can experiment on myself, I'd be willing to give pills a try if anyone can tell me that they have had success with them. I'm so sensitive that I can't even do other generic brands of Cholestyramine. And I've tried a few of them (maybe like 3 others...).

So, anyone, anyone??

Laine

[SJH]

I'm just beginning on Colesevelam (generic for Welchol). Most insurance won't pay for Welchol. Have done much reading and research. Many successful reviews out there, this is a good one https://www.drugs.com/comments/coleseve ... ronic.html. I'm starting slow with pacing the dosage to get to my ideal requirement. Directions call for a quick step up to 3 pills am and 3 pm (I believe this is based on using it for cholesterol. Must take one hour after meds or four hours before meds. Pills are large but not a problem. It's reported that this medication is stronger than Cholestyramine (I was on that for sometime but didn't get to remission). I am feeling better and more "settled down" with this medication.

You have been so helpful to others on this site, I will continue to share my experience.

[suzieq]

Hi Laine,

I don't know if I have a total success story for you but I am so much better. I was originally prescribed Colestipol, 6 pills a day to be taken 2 with each meal and I had a mediocre response to the treatment, I was about to give up. I joined a Facebook group for BAM and they told me I was taking the medication all wrong. It needs to be taken on an empty stomach, before bed, is the best time as long as it doesn't interfere with other medications, along with a low fat diet (no more than 40 grams. a day) and a lowish fiber diet. I started taking the 6 Colestipols at bedtime and it made all the difference in the world, that was in June 2024. I am down to taking 1-3 Colestipols at bedtime depending on how I'm doing. I must also state that I have been on Entyvio infusions for over 2 1/2 years. I haven't been this good since 2011 when I was 1st diagnosed with CC. Now I do have some off days but it usually has something to do with what kind of food I have eaten and stress levels. I am gluten free, egg free, casein free and diary free.
I am in South Carolina and we have corresponded before on this page. I have only tried Colestipol for BAM, not the packets. The tablet is large but now that I don't have to take many it is very doable. I have had no side effects from it.

I hope this helps,
Susanne

[Catieu]

Hi Laine,

I already shared my experience with Colesevelam privately, but I’m writing it here in case it can help someone else.

Since I couldn’t tolerate Cholestyramine, I started taking Colesevelam. Following Suzieq’s advice, I began taking it right before bed, a couple of hours after eating. I started with one pill for about three weeks. At first, it seemed to have an effect, but progressively it stopped working. After two weeks, I increased to two pills, and with the holiday season, I decided to stick to this dose until the festivities were over. Again, it was the same as with one pill: I improved at first, but progressively it stopped being effective.

However, I stayed with two pills, and eventually, I reached some stability. The number of bowel movements, texture, urgency—everything became more stable. My bowel movements and condition still can’t be considered normal; there’s still a long way to go for improvement. But I believe I’m on the right track. The side effects are totally manageable for me. And although there are still bad days, they are fewer now. The pain, however, hasn’t subsided.

Currently, a couple of days ago, I started taking three pills on alternating days. It’s been two days with three pills. The side effects have worsened, but I expect them to decrease within a few weeks. My plan is to maintain this dose for about three weeks or longer and then increase by one more pill.

I’ll keep you all updated.

A big hug,
Marta

[HockeyMom]

Thanks to you all for replies..yes Susanne and Marta have corresponded with me. I told Marta that I have a yearly PCP visit in a few weeks and messaged them about wanting to try Welchol and they said fine, let's talk about it then.

I'm doing this to just simplify my life. I haven't looked into any other bile acid binders since like 2016 when I wasn't doing well at all and asked my then PCP about Welchol. I believe at the time it wasn't available as a generic..so my insurance shot it down and thus I stayed on the cholestyramine train!!
Of course at that time I think I was taking 4 packets a day...which as it turns out was only half of what I needed! I have no issues with ramping up quickly as constipation honestly has NEVER been an issue for me. Deer pellet poop-yes, CONSTIPATION where you don't poop for days?-no.

I'm good with fairly large pills. I seem to do best doing the cholestyramine twice a day so I figure that's probably what I will try with the Welchol.

Again-thanks for the feedback people!

Laine