Bile acid malabsorption

[freshin]

Anyone else have bile acid malabsorption? I’m pretty sure I have it and am desperate for tips and advice. Currently struggling to go anywhere without a toilet very close.

I had my gallbladder removed 3 years ago. Around 1.5 years ago the problems began. It’s hard to pinpoint exactly what sets it off. Surprised at what I can eat. I do feel if I haven’t eaten anything or much I feel much worse, anyone have this?

After coming very close to having to open my bowels in a field last weekend I’ve had enough. It seems walking makes it worse, everything sloshing around. I desperately need the loo very suddenly when walking. Days out are a nightmare. I need help. I’ve an appointment booked with the GP on Monday. But for now is there anything I can take to get me through the weekend as I’m supposed to be meeting up with family on a beach! I’ve been taking buscapan, not sure if it helps or not. Snaking helps a bit but not with the weight. Any experiences or advice would be appreciated.

I had bowel cancer and a third of my bowel removed and I was told I would have to live with diarrhea and take codeine pills and loperamide.
Neither of these worked - the only thing that was effective was codeine linctus which doctors would only prescribe occasionally and if I asked for it more than once every six months I was accused of being a drug addict.
Like you, I found day to day life difficult and travelling a nightmare.
After 12 years I went to a private GP and begged him to try to find a solution and he sent to me to a gastro specialist who had a scan done and discovered I was suffering from bile malabsorption.
I now take cholestagel and I have completely got my life back.
I asked the gastro doctor why no one - the surgeon who operated on my bowel, the oncologist and GPS - had suggested this and he said it’s a quite unusual condition.
Constantly worrying about being near a loo is exhausting and demoralising and basically ruins whatever one’s doing so do press for a scan as if you are suffering from this it is treatable.
please let us know how you get on.

I'm on co codamol for sciatica. That's helped no end. Otherwise it's a careful diet as if I still had a gallbladder. So no fatty foods, no tomatoes, onions, garlic, caffeine, alcohol in my case when it's bad. At other times I can get away with it.

Have you tried Ox Bile supplements?

My GP prescribed Questran light ( which is Colestyramine - similar to Cholestrogel mentioned above but in powder form) after I had tried pretty much everything else . Buscopan, loperimide, mebeverine (which they first prescribed ) made absolutely no difference, Codeine did (but obviously they don't want to prescribe that ) I had to ask specifically for Questran though after hearing about good results from other people.

It has pretty much cured the problem but I still have some difficult days , but never have toworry about leaving the house now . It's been life changing
(Dr said that I could be referred for a BAM test but the waiting list was over two years , but he willing to try me on Questran ) .
Good luck, its utterly horrendous and really misunderstood, I think .
Actually have g talked about it more I now think that it's not as uncommon as people think .

Thankyou for sharing this. I hope all is well with you now x

Hi OP my father suffered from this after having a bowel resection. Like other posters he was prescribed Questran which made it manageable

I am amazed that I can now eat things like pulses again and most veg which I really couldn't previously without dire consequences the next day

I have this. Diagnosed in 2019 after many years of stomach issues due to having my gall bladder removed.
Eventually sent for a Sechat scan which showed bile acid malabsorption. I was put on binders. I go between questran lite and colesevelam. Each work for a while for me, then symptoms start again, so I have to switch.
But on the whole symptoms are far better now than they were. When things are really bad I take Imodium as that is the only thing that helps. Buscopan works for stomach cramps. I take paracetomol for pain. Don't use ibuprofen as this can make symptoms worse.

There is a good group on face book for BAD.

Eventually sent for a Sechat scan which showed bile acid malabsorption.

Eventually…….I wonder why it takes doctors so long to consider this diagnosis.
I mentioned this to another doctor who I was seeing for an unrelated issue and he said ‘I’m afraid doctors don’t take diarrhoea very seriously’.
Well I dare say, but those who differ from this problem have their lives made really difficult. I mean, if one is going to be sick, it may not be great for onlookers but at can at least be sick into something - but the other there’s no such option.

Questran worked for me for a while but now I rely on looeramide melts along with a PPI - you can get both over the counter

I was diagnosed with bile acid malabsorption 5 years ago after 30 years of terrible problems. Fobbed off for years and tried everything.

What works for me now:

I take Colsevelam (6 a day) on prescription

Enterosgel is the best thing I take by a mile. Expensive but I tried it after seeing an ad in a magazine (before diagnosis). When I eventually saw a consultant and told him this was the only thing that worked but was bankrupting me, he said that was a sign that it could be BAM. He was then happy to do a Sehcat scan - he said they're super expensive and rarely offered. That scan confirmed BAM.

So these days I'm on 2-3 doses of Enterosgel a day, plus 6 x Colsevelam, plus loperamide (Imodium) if I need it. As long as I don't eat too much fatty food I'm fine.

Another thing I found worked well years ago as a student was slippery elm capsules. But I had to take a LOT of them.

Best of luck, I really sympathise.

I am also on Colsevelam (six a day) and it really helps. I also recently stopped drinking alcohol and that has additionally improved my symptoms.
Had my gallbladder out very young and immediately suffered from BAM so - in a way - I was lucky as the consultant didn't sign me off straight after surgery as I had a whole host of other problems which had previously been attributed to gallstones.

I have this following removal of part of my small bowel last year due to Crohn’s. It is a massive nuisance. I am taking colesevelam which helps to reduce the frequency, but otherwise I am just trying to live with it.

I had my gallbladder out about 15 years ago and suffered the same OP. I tried everything, including Questran Light, I even went Gluten Free for a year. Things improved with each thing I tried, but then just went back to the way it was before. If I had to go anywhere in the morning I was taking Imodium type tablets just to get through. I recently came across a group on Facebook (Living without a gallbladder) and was surprised that the majority of people on the group also have this problem. One person recommended some particular Enzymes so I decided to try them. Wow! What a difference! Within two or three days there was such an improvement that I hardly thought about my bowels all day. That was two months ago and although they aren't cheap they are worth every penny. (If anyone is interested they are 'Udo's Choice Super 8 Immune Probiotics - Hi Count Microbiotics with Vitamin C' and I got them from Amazon). I'm really hoping that this is the 'cure' for me.

What do people find that triggers symptoms?

Well I've modified my diet. Still low fat, but now have lactose free milk, gluten free pasta. Cauliflower weirdly.

I had last winter a lovely venison suet pudding, veg. Then a latte. Two hours later whoosh. Everything emptied out.

Was either the suet or the milk.

Bet they would take it more seriously if their receptionist was leaving his/her post to go to the loo several times a day.

Bet they would take it more seriously if their receptionist was leaving his/her post to go to the loo several times a day.

Yes, or if they themselves were!

Had gall bladder out in 2003
Orangey poo when crapping feel terrible hunger all the time after shitting everything out. Have tried it all Eating healthily eating unhealthily eating not eating at all. Does not matter WHAT i eat Have tried cutting out loads of stuff Still get diarrhoea

I was diagnosed with BAM in 2023 after many years of complaining of diarrhoea. It was brushed off for many years as IBS or linked to my medication for my hiatus hernia. My GP was very dismissive but I pushed for a referral to seek an alternative for my hiatus hernia medication. The consultant was really dismissive and told me it was anxiety based (I do have mid anxiety but am medicated and cope really well) linked to travelling on public transport. After demanding further tests due to a history of bowel cancer with my father, I was given a flexible sigmoidoscopy which was clear and then a SeCHat scan which revealed 5% absorption. Before diagnosis I had some very very near misses on public transport and when out and about.
I now take Cholestagel which is really good but does have side effects for me of horrendous wind so when travelling / in the office I take Imodium. I get this on prescription as I use quite a lot.
The main issue for me is high fat foods - so I tend to avoid beef, lamb etc but also eggs as the yolks are fatty. Even avocados can be problematic as unfortunately my body doesn’t know the difference between good and bad fats. Other foods can without reason cause an issue one day when they’ve previously been fine. I do wonder if it’s liked to how they’re cooked. I also find that I get very tired when I get a flare up.
In terms of my GP surgery I don’t even think they understand it as I raised issues about weight gain and blood tests as recommended by GUTS Uk and they basically told me they couldn’t help and wouldn’t do any regular blood tests.
The best thing I did was to participate in a clinical trial that Cambridge Uni and Addenbrookes ran in Aug 23. The doctor in charge suffered from BAM and was so knowledgeable but also interested.

Thankyou all for sharing your experiences. I’ve had blood test and stool tests. Vitamin D is low and kidney test needs repeating. I don’t drink a lot so am try to drink more. One of the stool tests was rejected as it to liquid, well that’s the problem! I’ve got a phone appointment on 02/06 at my request, tried to speak to someone sooner as I’m struggling at the moment but was told my request is denied and I have to wait. It’s a nightmare, I don’t feel I’m being taken seriously. Unusually I have 3 days off, but what can I do? Where can I go? I’m stressing now about a planned family day out tomorrow. Stomach is far from happy. Once I get walking I know things will get worse and I will be desperate for a toilet. I don’t want to go. My family are understanding but I hate holding them back and being a problem. I had a nightmare experience a few weeks ago while walking in a field. It was unbearable and humiliating. Thank god there was a road nearby and my DH ran back to get the car and drive around to me. I swore then I would get help but i feel I’m not getting it. I asked for the seHCAT scan but I guess I’ve got to wait until 02/06 to discuss it. I don’t have much hope. I was really hoping I’d be given the pills to try.

I have severe bile acid malapsortion. I take 65 imodium tablets a day alongside other medication to try and control the symptoms. The imodium is prescribed. I wear incontinence pads and have frequent accidents. I still spend hours on the toilet day and night alongside painful stomach cramps. My quality of life is severely reduced but I won't give up hope.
What medication are you on? Do you take any imodium daily? It should help with urgency and stop your anxiety about being out and about. The standard dose is 6 a day. This will help your symptoms. Try the incontinence pads too, you will feel more confident out of the house.
I would apply for a disabled key online so you don't have to queue for public toilets.
Have you been advised to have a low fat diet? This is supposed to help diarrhoea.
You may have one or more than one IBD. Have you.had a colonoscopy and/or Endoscopy? Many bowel related issues can be diagnosed this way.
I paid to see a private gastroenterology consultant as a one off as the NHS kept cancelling appointments. It was £150 plus VAT. He referred me for various tests and procedures and I was placed to the top of the list. I received my diagnosis of bile acid malapsortion pretty quickly following my initial appointment.
Would you be able to get the money together for a private gastroenterology appointment?
Have you also considered Coeliac disease? This can cause similar symptoms. It's a simple blood test that can be done at your GP surgery.
I hope you find out what's going on OP and receive the relevant treatment quickly.

@freshin how are you now can I ask, did you get any answers?