Bile Acid Diarrhoea

[Whitesugar]

I have this condition and take colestyramine daily which controls it well. I recently asked my GP to have my fat soluble vitamins checked (A,D and K, I believe) in a blood test as this has not been checked in a long time. The email! came back saying there was no indication for this. The literature says that this should be done annually if on long term treatment with bile acid sequestrants as they can interfere with the absorption of these vitamins.

Does anyone else on these type of drugs have their vitamin levels checked or had any problems getting it done. I don’t know how to proceed.

[Bellacat21]

hi I also take this and haven’t had these vitamins checked but I think I will as I am aware that vitamins don’t get well absorbed.. but I am now be curious to see

Thanks Victoria

[MyStar86]

Are you under a gastro? Was it a gastro that diagnosed the BAM? If so it is the gastro that should be checking your bloods annually and you should still be under them so you could contact the gastro secretary and speak to her either to get an app eith your gastro or just directly ask about the bloods because they are best place to answer for you. The liability wouldn’t usually be with the gp. Good luck

[Whitesugar in reply to MyStar86]

My gastroenterologist was private due to never getting anywhere with GPs. The diagnosis was in 2018 and I was then handed back to the GP for the prescriptions which has not been a problem.

[MyStar86 in reply to Whitesugar]

I think worth contacting your gastro because most of them also work locally in the nhs not many are just purely private if you search the name online it will show where they work via nhs and if your gp won’t do the bloods you are asking for then getting the gastro to do it is the only alternative unless you want to pay to get the bloods done privately.

[Pollyboo]

Hi, I had my Gallbladder removed 11yrs ago and have taken cholestyramine prescribed by my GP for about 10 years as I was having trouble with bile. I only take 1 sachet per day early evening, but I still suffer with a loose tummy and take Imodium as necessary. Just wondering how much cholestyramine suits you as at the moment my IBS and loose tummy has been awful, not going out ect,I do have a blood test occasionally, but I do take vitamin D summer and winter as advised by a dietitian.

GPs don't seem to bother about us anymore I find,and leave us to fight our own corner.

Reluctant to go to my new GP as my old one has now retired.

Sorry to go on, but just wondering how you cope.

Thank you for reading this post.

Take care

Pollyboo

[Whitesugar in reply to Pollyboo]

I get by with one sachet before bed, but I know you can take more. Would it be worth experimenting with the dose with your doctor’s permission? I do take an Imodium every other day and that keeps me on track most of the time. I had explosive and erratic diarrhoea for over 40 years so to have control at last was amazing. I was diagnosed in 2018 so nearly 7 years on colestyramine now.

[Pollyboo in reply to Whitesugar]

Thank you for your reply. Yes I think I should take Imodium on perhaps a more regular basis. I try and wait until my tummy starts to play up. For me it was always first thing in the morning, could then take Imodium and to some extent get on with my day. Since Christmas it just has been any time so that leaves me anxious and upset and I don't want to leave the house.After 21yrs I should be in control of this.

Cholestyramine is my life saver if I don't take this I am in so much trouble. I also thought about experimenting with the dose. My GP doesn't fill me with confidence.

Thank you once again I hope you can get some help with your blood test.

Pollyboo

[Netbet22]

Hi i got diagnosed with this just over a year ago i take colesevelam was taking 3 a day but gastroenterologist said just take 1 a day as suffer with bad constipation off the colesevelam but still getting constipation off the 1 tablet , i usually get my bloods done every 6 months and vits have been ok since been taking the medication for bam but before i got diagnosed with it my vits were all over tbe place low vit d and folic acid . Only thing now is my vit b12 is on borderline but know medication for it off the docs as they are useless and dont care anymore