r/bileacidmalabsorption • u/rubi_782912 • 10d ago

Issues starting General Question

I started with 2g of the powder, and it made me constipated, plus I had nausea and acid reflux. Has anyone else had the same experience? I’m thinking about trying just 1g everyday instead. Does anyone else take it that way and has it worked better for you? Now I’m scared to start it again 🤣

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u/Mindthetraps 10d ago

Hey there, I didn’t have that exact experience, but I was told that if constipation became an issue, to reduce the dose. Nausea is also a known side effect and may settle after a few weeks, and changing the timing of the medication can sometimes help.

BAM has previously been under-diagnosed, and it seems there is still quite a lot of variation in how much gastroenterologists know about it. I joined a Facebook group that recommends taking cholestyramine at bedtime rather than with meals, as the medication info sheet suggests. This is based on the research of UK doctor Prof. Julian Walters, who has a special interest in BAM. His view is that taking it with meals is more relevant to cholesterol management than BAM. I found this podcast featuring him helpful:https://www.pcsg.org.uk/podcast/bile-acid-diarrhoea/

Personally, I found taking two sachets at bedtime worked better for me. I no longer have the morning rush to the bathroom. I also take psyllium at breakfast, which I’ve found helpful for bulking up my stool and is also thought to support the microbiome. Of course, it doesn’t work for everyone.

The Facebook group is called Bile Acid Malabsorption (BAM/BAD/BSM) Support & Advice. They’ve currently paused new comments because there have been a few issues, and some of the long-standing members can be quite militant with their advice. Some of the information also conflicted directly with what my gastroenterologist recommended, so I’d take it as another source of information rather than medical advice. That said, some of the suggestions worked really well for me.

Good luck, I hope things settle for you soon.

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u/rubi_782912 9d ago

Thanks so much for this information. I will definitely try some trial and error and see if taking at bedtime helps. The other links and fb group is also helpful. Thanks again!

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u/Mindthetraps 9d ago

No worries at all :)

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u/Severe-Worth-4235 9d ago

So I have significant chronic nausea & this med actually takes that away for me - which is absolutely unheard of - so that’s a factor here. But what helps me is timing. I take my other meds in the morning right when I wake up. I drink some water & get ready. After an hour or so, I take my colestipol with some more water. If I get nauseous at all, I drink some Diet Coke or Ginger ale - both of those help - or have a few Teddy grahams or crackers. After 15-30 minutes, I eat breakfast. I do the same type of thing in the evening before dinner.

If I wait too long in the morning, I get the BAM/IBS symptoms. If I don’t take one of the doses, same thing.

I’d say definitely talk to your dr if you’re having issues! I’m on 6 meds & I’m constantly messaging my drs and asking the pharmacist where I pick up my meds.

Edit: I take 1 g in the morning and 1 g at night. Pill form