Starting Colestipol and some questions.

[Julie75]

Hello-

My GI has prescribed Colestipol for me and after reading and researching it makes sense that I could have BAM. I have some questions based on what I’ve read on this site from other’s experiences. I picked up my prescription yesterday and took 2 then around 2pm and I’ll say it seems to have already helped the burning I feel in my digestive tract. I didn’t wake up with a burning stomach.

1. Everyone seems to have best results taking it all at once before bed. Can someone explain why that is the best way/time?

2. I can’t take mine at bedtime because I take other medication that I have to take at bedtime because it makes me sleepy. If taking the prescribed amount all at once is best, taking it around 2 pm would work great for me because it is long enough before I take my other meds and I usually have a pretty empty stomach at that time and it’s about 4 hours before I will eat dinner. Although I may snack on a little something here and there before/while making dinner. So would taking it at 2pm be ok and work?

3. I was prescribed 4 pills a day. I am thinking about starting with 3 and see how that goes as to not develop constipation. Thoughts?

4. If a person has BAM does that mean the bile acids are hanging out in our system all the time or do we still need to eat fat to trigger it? My system always feels like it burning but taking anything like tums or pepto or the ppi my GI tried to get me on, none of those stop the problem. I would say it feels like my stomach is burning but it could be somewhere else in my GI tract and I just identify it as my stomach. So BAM makes sense to me for that and elevated liver enzymes. Other reasons too but I am just hopeful this is the answer.

All info and advice on this med and BAM is greatly appreciated.

[Cat Granny]

Hi Julie

I'm one of the posters who is currently taking Colestipol. I'm not convinced I actually have BAM, but it sure does keep things normal for me.

I was on budesonide from February until about mid-July. I had a very bad flare start in February, which I now suspect may have been triggered by seasonal allergies. Anyway, I have a different plan to deal with those allergies. But back to colestipol.

I started out with two pills at night before I go to bed. After a couple I days, I started taking three tablets. Still did not have the consistency that I wanted, so I started on four tablets and had normal bms for several weeks. Then I started having some constipation, so I went back to three. A few weeks ago my movements where getting looser, what I call gobby, so I again went back to 4 tablets. Back to normans and I am now taking three. I think three is my sweet spot but I will take 4 when things start going south.

Please keep in mind you have to take these pills for a few days before you see results. So give it some time.

I am not an expert on this, but I think taking them before bed lets your system process the medication. Since you take another medication at night to help you sleep, you will have to figure out what works for you. If the 2 pm dosing works for you - great! The FB BAM folks advise taking colestipol mid-morning - between breakfast and lunch - if you can't take them in the evenings.

When I started on colestipol, I was not given any dosing instructions by my GI Clinic. So like a dummy I listened to the pharmacist about taking it in the morning, before any other meds. I think this is the way you would take it to reduce your cholesterol! I wasted a couple of weeks and had a lot of frustration before I asked my GI clinic for clarification. They said before bed, on an empty stomach. Things started improving quickly after that.

I also want to refer you to a FB group dedicated to BAM. It is based in the UK, and they have lots of good information there.

I really hope this helps you! It works very well for me, at least at for now (knocks on wood).

Good luck!

Nan

[tex]

Hi Julie,

Nan did a good job of discussing dosing. I've never used it, so I'd rather not try to advise anyone on when to take it. I can tell you why you might have BAM, though. BAM is caused when unused bile acids are not reabsorbed in the terminal ileum and recycled by the body. If they're not absorbed in the terminal ileum, when the reach the colon they promote diarrhea. The reason why they are not absorbed in the terminal ileum (by BAM patients) is because the terminal ileum is inflamed, which compromises absorption of anything, including bile. Crohn's disease, MC, and other issues can cause an inflamed terminal ileum — In fact, for many of us, the inflammation In our terminal ileum is more concentrated than in our colon.

Did you read the September 1 newsletter published by the Microscopic Colitis Foundation? It discusses advances made in the diagnosis of BAM Recently, and discusses various treatment protocols using a variety of bile acid sequestrants. It also describes several different types of BAM. If you didn't read it, you might find it helpful, although I don't recall that it discussed specific treatment times (time of day). Here's a direct link for your convenience, where it can be read or downloaded:

https://www.microscopiccolitisfoundatio ... r_2025.pdf

I hope this helps,

Tex

[Julie75]

Thank you both for the great information! I am 4 days into taking 3 pills and my biggest improvement is that I am no longer unbearably sick to my stomach. And I don’t feel like my entire system is inflamed. My stools are not normal by are fewer and seem to be improving. I feel my body adjusting to the medicine. I need to change my mindset because I was eating keto for years and absolutely loved the energy and mental clarity that provided. It wasn’t the last couple of years as my body was in crisis with the MC being out of control and a couple of other health issues I have been working to clear up. But my brain is trained to think fat is premium fuel. I was a healthy keto btw, not dirty keto. So I have to find a new diet that works for me and this medicine.

[Cat Granny]

Fat is unfortunately not your friend anymore. I can for sure tell when I've had too much fat. I've learned to moderate it. And when it does happen - because it does - that's usually when I need to increase my dosage.

I would suggest you try 4 pills for a few days and see how that works for you. My PA told me I can take up to 6 pills a day - I haven't needed to do that. And of course you should follow your own doctor's suggestions.

Glad your tummy feels better! I hope you continue to improve.

Nan