Bile Salt Diarrhoea

[Kaye1976]

How does anyone suffer with this condition?

My 20 year old daughter has just been diagnosed with this and is really struggling to even hold down a part time job with the constant need to be home near the bathroom.
Any advice would be appreciated x

 

[BettyCrockerr]

How does anyone suffer with this condition?

My 20 year old daughter has just been diagnosed with this and is really struggling to even hold down a part time job with the constant need to be home near the bathroom.
Any advice would be appreciated x

What medication is she on??

 

[Be More Pacific]

Do you mean Bile Acid Malabsorption?

 

[Kaye1976]

What medication is she on??

She is currently on a binder which is not working and now waiting to see if the NHS will let her have a different medication which is very expensive at £158 per 4 weeks

Do you mean Bile Acid Malabsorption?

Yes that’s the same condition but her diagnosis is down as Bile Salt Diarrhoea x

 

[Be More Pacific]

Yes that’s the same condition but her diagnosis is down as Bile Salt Diarrhoea x

I only heard of it a couple of weeks ago because someone I follow on Instagram has it. Hers was caused by losing a lot of weight (16.5 stone) on a liquid diet very, very quickly and having to have her gallbladder removed as a result. From what she's said, she sees a gastroenterologist regularly and takes medication I think.

Sorry I couldn't be any more help - I just wanted to clarify it was the same thing. I hope your daughter gets on the right medication for her soon x

 

[Kaye1976]

Thanks for the info. What the name of the person you follow please x

 

[Be More Pacific]

Thanks for the info. What the name of the person you follow please x

Her account really isn't about BAM - she just briefly talked about having it. It's a weight loss account.

 

[Lauram58]

Hello, i have this condition. I had my gallbladder removed about 10 years ago which then resulted in bile acid malabsorption. What binder does she currently use? Xx

 

[MISSMURDER]

I had my gallbladder removed around 9 years ago and really suffered with BAM I was on cholyestyramine sachets dail. For the past year I’ve only had to rely on OTC upset tum tablets As it seems to have finally got under control. I hope she doesn’t suffer for too long, has she been given any meds.

 

[flutternutter]

Theres a private facebook group she could/should join. Lots of great advice.

Aside from binders (finding the balance of right type/time of day/amount is hard at first) lots of things help ppl so its a great source of info. E.g. for me, eating little and often helps.

She can take loperimide as well as or instead of binders. Again, getting a balance can be difficult but you can get prescriptions for big quantities.

Make sure she's getting vitamin D, b12, iron. Omega 3 is a decent one too as i suffered depression terribly since getting this horrible illness.

I work full time. I occasionally have to run to the toilet but you CAN get your life back! Best of luck to her

 

[Kaye1976]

Hello, i have this condition. I had my gallbladder removed about 10 years ago which then resulted in bile acid malabsorption. What binder does she currently use? Xx

She is currently on questrian

Hello, i have this condition. I had my gallbladder removed about 10 years ago which then resulted in bile acid malabsorption. What binder does she currently use? Xx

This is what she is on. She hasn’t had her gallbladder out.

I had my gallbladder removed around 9 years ago and really suffered with BAM I was on cholyestyramine sachets dail. For the past year I’ve only had to rely on OTC upset tum tablets As it seems to have finally got under control. I hope she doesn’t suffer for too long, has she been given any meds.

Same sachets as you at moment.

Theres a private facebook group she could/should join. Lots of great advice.

Aside from binders (finding the balance of right type/time of day/amount is hard at first) lots of things help ppl so its a great source of info. E.g. for me, eating little and often helps.

She can take loperimide as well as or instead of binders. Again, getting a balance can be difficult but you can get prescriptions for big quantities.

Make sure she's getting vitamin D, b12, iron. Omega 3 is a decent one too as i suffered depression terribly since getting this horrible illness.

I work full time. I occasionally have to run to the toilet but you CAN get your life back! Best of luck to her

She is currently having therapy since being diagnosed as she also has Gluten, Soya, Nuts and Fish allergies.

 

[Lauram58]

I currently take Colesevelam and they work well for me, getting the dosage right has took a while. I tried the sachets when first diagnosed and couldn’t stomach them,
Ive recently found out i am gluten intolerant also and its been hard to adjust but getting there, but it has helped my symptoms massively!
I was diagnosed early twenties and it has had a huge effect on my life, social life etc. Alcohol makes me really poorly and im too scared to eat out after years of running to the loo it’s easier to eat at home.
Ive been having counselling recently to try and overcome my anxiety and maybe start living my life again!!

 

[Kaye1976]

This is where my daughter is at with therapy and coming to terms that it’s a life long condition. She is yet to master her medication and has not worked for weeks.

 

[Lauram58]

This is where my daughter is at with therapy and coming to terms that it’s a life long condition. She is yet to master her medication and has not worked for weeks.

I really feel for her, having the condition so young myself it really did mess me up a little. My counselling has helped a little recently and wish id sought it sooner.
The medication i take is a binder, but its in tablet form and so much easier to take so maybe she could look into that.
Has she had a colonoscopy to rule out anything else?
If you search Bile acid malabsorption on Facebook, there are some really helpful groups on there, ive learned more about the condition on there than from my GP who doesn’t even know what it is x

Theres also a charity https://gutscharity.org.uk/advice-and-information/conditions/bile-acid-malabsorption/
Useful info on there x

 

[flutternutter]

This is where my daughter is at with therapy and coming to terms that it’s a life long condition. She is yet to master her medication and has not worked for weeks.

Its awful. I would be at the toilet at work 9+ times per day! I was mortified. I stopped socialising. Even now I rarely go out and when I do its either no food or 2 days pre-gaming immodium

Like i said above but I dont think I was clear, the condition can lead to all sorts of issues due to not absorbing vitmains from food in the gut as a normal person would. In me this was depression, hair loss, tiredness.

Its great shes going to therapy but definitely do not give up on the binders and medicating for it. She can learn to live with the anxiety and fear of needing the loo. She should not have to live with the symptoms all the time.

My improvement since getting on track with meds has been about 90%! I know a lot of ppl dont get near it but there is hope!

Ive found during the months in build up to AF hormones do affect it so I tend to have a day or 2 where I still am ill or need loperimide.

The most important thing is she isnt alone! The facebook group are great, if ppl have accidents or bad days etc we all rally round to support and you can speak to ppl who feel and have been through the same.