Marre - What is it you take for bile?

[Poppet11]

Can't remember the name of it but it was something to do with cholesterol?

[Poppet11]

It's okay, I found it.

You take Colestipol.

Could be an interesting fact:

In the BMJ article is says that Cholestyramine causes B12 malabsorption but I'm not sure if it's still manufactured. Colestipol is similar stuff and works in the same way to do the same job.

Might be worth looking into since your symptoms haven't been that good of late?

[Hidden]

I take Colestid granules for oral suspension 5g, which is primarily for lowering cholesterol, I take it for diarrhoea induced by bile acid mal absorption and on the whole one half of a sachet per week, or twice a week.

Info of what and why, see:

medicines.org.uk/emc/medici...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/246...

I take very little, for me the benefit out weighs any harm, it does make me tired, and I do now take a multi vitamin once in a blue moon, have increased my B12 to once a week and same for folate tabs, keeping an eye on my ferritin that seems to be dropping, spatone did nothing, have some other iron tab now, and will see on my next blood test if that is all working. The extra B12 and folate is giving me the extra I need for this heck time! But I'm doing well.

[Poppet11 in reply to Hidden]

It's not a case of what and why, it's just that I noticed the mediation Cholestyramine, which is basically the same stuff, is on the common causes list of B12 deficiency along with things like Metformin and Nitrous Oxide.

[helvella in reply to Poppet11]

Cholestyramine also causes enhanced faecal excretion and/or degradation of thyroid hormones.

[Hidden in reply to helvella]

I did not know that re :"enhanced faecal excretion and/or degradation of thyroid hormones.". Although I can tell this is not the case for me re: "enhanced faecal excretion", hum I'm not in agreement with the latter at all. But it all depends what and who and why it is prescribed, I'm sure.

[helvella in reply to Hidden]

What I was trying to say was that it increases the amount of thyroid hormone that is excreted - not that it (directly) affects the gut/bowel/etc.

[Chancery in reply to Hidden]

Hi Marre, can I ask where your bile acid malabsorption comes from - is it from a problem in your gut? And is this something related to your PA?

[Hidden in reply to Chancery]

No definite answer was given to me, a more so much is unknown. But it does not help that my terminal ileum is smooth (why is unknown), that is the section where bile (with vits /fats) is absorbed. Normally its coiled, so smooth means much shorter area for a starter for up take. And I suppose I produce excess bile acids which is an irritant to the bowel. That may explain why some need to take so much more than the other, how much bile is produced.

[Chancery in reply to Hidden]

Has anyone ever suggested stress as a reason for your excess bile acids? Or have you ever thought it might be? Does stress make it any worse? Stress seems to irritate the gut all over the place so I just wondered...

[Hidden]

Yes but it only counts if you have recycling of bile going on, which in my case is not a very good working process anyway as the recycling happens in the terminal ileum, which in my case is smooth instead of coiled and therefore not in perfect working order anyway. Besides the fact that I've only been taking this stuff for a year now and have been B12 def diagnosed since 2001. My serum B12 is the highest it has been now.

[Poppet11 in reply to Hidden]

Yes, but your symptoms recently aren't that good, are they?

I don't think it only counts in certain situations - it depends on the reason it is contra indicated for - if, for example, it oxides B12 in the stomach then the bile recycling isn't going to be involved.

But I leave it up to you - just informing you it's on the list of stuff which causes B12 deficiency.

[Hidden in reply to Poppet11]

Thank you Poppet, I knew that, but it is for that reason I only take half a sachet when I know I need to be safe, its very little compared to what others take, up to 15mg 5 times a day. I know others who take it. As I said the benefit outweighs the harm for me personally.

I think I'm heading towards iron def, and should let it sink so it will show in my blood tests, but its so much nicer not to have to sink so low.

[Hidden]

Its also not obvious if to much bile in itself causes problems with IF production and IF bound B12 absorption anyway. All seems to be concerning IF it self and IF bound B12, which makes me think it does not affect injected B12 say, and there is no doubt that I have little uptake and or storage of any IF bound B12 and the injected B12 eitherway, no drop in my serum B12 since I started taking this colstipol stuff, but it did half my serum folate, so I have moved to weekly 5mg folic acid again, and my ferritin is dropping slowly every year.

All explained in the free BMJ article you can read via this abstract, see:

ncbi.nlm.nih.gov/pubmed/723...

gut.bmj.com/content/22/4/27...

This one implies iron uptake can also be inhibited

ncbi.nlm.nih.gov/pubmed/40578

[Poppet11 in reply to Hidden]

Thanks, I'll have a look at those when I've got time.

The iron, with many of us, seems to be an on-going issue no matter what happens.

[swimminthrutreacle]

Hi,

I have been B12D for a long time and was prescribed Cholestyramine ( its a resin!) for bile acid diarrhoea following ileal resection. Apart from the taste, I couldn't get on with it at all, couldn't get the dose right and had awful gastric pains, eventually giving it up when I developed diverticulosis. I was also concerned that the manufacturers recommend supplementing with fat-soluble vitamins A, D, E and K, but my concerns were dismissed.

[Hidden]

Hi swimminthrutreacle ,

I think its very wise to supplement, re:"supplementing with fat-soluble vitamins A, D, E and K, ", and am sorry to read you could not get on with it. I do think to much is very uncomfortable, but it is very different per person; what is to much. I find half a 5mg sachet works for 2-3 days for me, I know others who take a full sachet before every meal. Its very different per person! And I have no choice.

Am sure with diverticulosis you'd have to be even more careful, you'd not want blockage at all, as that can be so very painful. Hope you get good help with that, not nice at all.

Kind regards,

Marre.