Acid Bile Diarrhea/Malabsorption

[Redhead80]

Hi, after a push I have finally been referred to see another consultant with regards to my unusual IBS symptoms. He’s running bloods, tests and a colonoscopy but has suggested Bile Acid Diarrhea/Malabsorption. I’ve never heard of this but since googling I think he may have got it spot on. Has anyone else been diagnosed with this type of IBS and is the treatment successfull?

[JohnaB]

Hey Redhead80. After 10 years of chronic IBS-D, taking 4-5 Immodium a day just to be able to leave the house, I started on Questran 3 weeks ago and have had only 3 days of IBS-D in that period. It's been life-changing.

I have an appointment next week with a BAM specialist who is going to run a test using an isotope to measure how my body processes bile acid... Which will confirm for sure that I have BAM and not IBS.

Just to be clear though, BAM isn't a type of IBS. It's a specific mechanism that's causing the issue; it's either caused by too much bile being produced, or the intestine have a faulty reabsorption process... Or it can have no known cause (I think it's called ideopathic).

I hope you have success after seeing this new doctor. The Questran is a pain taking it 3 times a day, and the flavour and texture isn't delicious.... But I was in a very dark place with my IBS and this drug, along with a low fat diet, has changed my life. Good luck!

(Sorry I should have added that during my 10 years, I have of course had all sorts of tests and other drugs: colonoscopies, mebeverine, Sertraline, Iribow, Probiotics, Buscopan, 18-weeks totally FODMAP free, York Test food intolerance)

[ST65 in reply to JohnaB]

You have just described my life! I not make up half litre bottles of questran, which I keep in the fridge and one of those is 3 doses - so, one per day. Have discovered that you CANNOT miss out on the doses, as the BAM rears its ugly head very quickly. However, much as a pill would be easier to take, this does the job!

[JohnaB in reply to ST65]

Ahhhhhh that's a good idea making a day's worth up at once. Might try it out. Not sure where you live but on the NHS a box of Questran costs them about £10, so it's the preferred medication. There is a single pill, you only have to take once a day, bit it's about 10 times the price for the NHS, so is only prescribed after having had the bile acid isotope test done at the hospital.

I'll see what the doc recommends once I get my results back, but I've been so amazed with Questran, I'll be anxious to change to something else.

[ST65 in reply to JohnaB]

I was prescribed Questran AFTER the "nuclear" test. Have to say, it does work, so like you I might be dubious about changing. Any idea what the pill is called?

[JohnaB in reply to ST65]

What was the isotope test like? Do you have to come off all medications for the 7 days between tests?

Not sure on the pills name and I can't find the bloomin' website I read about it on. But the NICE website does reference it here: nice.org.uk/advice/esuom22/...

Last week I had my first Chinese takeaway in 7 years! I honestly can't put into words how something so mundane helped lift me mentally.

[ST65 in reply to JohnaB]

The isotope test is an absolute dawdle - scan - drink their " radioactive" liquid and come back for another scan a week later. They then check how your bile acid effects your bodies ability to get rid of the radioactive gloop. Don't imagine you'll be able to take the Questran during this period, but I might be talking nonsense - it's an assumption.....

Great not to have to be Ussain Bolt to get to the loo after eating isn't it?

[JohnaB in reply to ST65]

Oh wow. Thanks for explaining how it works. My GP was a little hesitant to start me on the Questran before having the test... But she knew I was at my wit's end. I'd stopped leaving the house, it was affecting my work, obsessing about food. When I went back to see her last week she was surprised it had worked and I'd self-diagnosed. She's as excited as mentioned have this radioactive test done and for me to be better. Would ideally like to stop the Sertraline but don't want to change anything while I'm stable at the moment, tummy-wise.

Thanks for our convo this morning on here. Such a fab resource!

[Redhead80 in reply to JohnaB]

Thanks JohnaB. I’ve had IBS D symptoms for years probably going back to my late teens. It got worse in my early 30’s after a very long dose of antibiotics, they performed lots of tests and a flexible sonography and diagnosed IBS D, I was given Amitriptyline which worked and I weened myself of. IBS symptoms started creeping back then I had a tummy bug last July which I never seemed to recover from. IBS to the extreme, unpredictable and violent. Like you I’m taking 5 Imodium a day just to live normally. I had bloods done in september all normal and put back on amitriptyline this time it has not worked and I’m at my wits end. With this BAM do you get very loud tummy noises it almost as if I can feel all the fluid rushing through me gurgling, it’s embarrassing. Do any foods trigger it or is it everything you eat? It was the laughing point of the office but they’ve learnt I’m mortified and keep the comments to themselves. I received my appointment through for a colonoscopy this morning and it’s only 3 weeks away. The nerves are making things worse but I’m pleased the ball is rolling and also if it is BAM the success rate for the treatment is pretty good. It would be nice to have an answer to my problems, no one that has not suffered seems to understand the impact it has on confidence ☹️

[JohnaB in reply to Redhead80]

Thanks for being so open on here with your history. I'm just popping out shopping now but will reply later. Only thing I'd say is the colonoscopy isn't enjoyable, but it's certainly not horrendous. Just ensure they give you sedation and ask about Entonox gas... It makes it much easier. Reply later...

[JohnaB in reply to Redhead80]

Hey Redhead - sorry back in from the cold now...

I lived in Thailand for 4.5 years and had multiple food poisonings and bacterial infections, so I too had my fair share of antibiotics - I wonder if that is a common thing that can exacerbate BAM?

I don't know if the sertraline I'm on, has actually helped with the BAM/IBS-D symptoms, or if it's the Questran. Unfortunately I started treatment on both at roughly the same time. It wasn't my usual GP who started me on the sertraline - but when I did see my usual GP she said she'd have normally put me on Amytrip... but to keep going now I'd been taking Sertraline for a couple of weeks.

My stomach makes all manner of noises. And absolutely I get that gushing, rushing, cold and then hot sensation that passes all around my lower abdomen. It's having that happens which sets off my anxiety of needing to be near a toilet too - which is a vicious cycle to get into.

I did the FODMAP diet for 12 weeks... and I mean completely FODMAP free. I didn't even do the reintroduction stage as at first it gave me a 90% improvement in symptoms. However after those 12 weeks, my symptoms came back - and ten times worse. I continued on with excluding FODMAPs where I could though to try and minimise any symptoms. Since I've been on the Questran, I've been back on normal bread, eaten milk chocolate and milkshakes for the first time in years - and haven't had any symptoms. I even had an onion and garlic dish from the Chinese - and no D in the day or so that followed. The food side of things really frustrates me, as I think a set amount of something doesn't set me off with D... but a tiny bit more than my body can tolerate and I'm back to the loo.

I am incredibly lucky with colleagues and friends - they're probably all sick and tired of hearing me talk about the loo and poop haha. But they do listen and they understand if I need to nip off, not to make a face or a fuss. I'm not saying you should do the same and talk about toilet troubles all the time - but even if you can find one person you're close to at work let them know when you're having a bad day, and they can be an ear to talk to. I always carry round with me a bag: loo roll, VIPoo spray, clean boxers and trousers. I'm hoping if this Questran continues to work, I can stop doing this - but for now it gives me a safety blanket when I'm out and about.

I've had 5 colonoscopies since I was 20'ish. 1 on the NHS was incredibly traumatic and they wouldn't give me sedation and it took me swearing at the doctor for him to stop the procedure. I had 2 in Thailand which were great as they gave me 10mg of Fentanyl - so although it was 'conscious sedation', I certainly don't remember it. Then I had another on the NHS and that was fine, again some sedation. And my most recent one, in December, was on the NHS but I had the option to go to a private hospital (3 weeks wait, rather than 40 - and the private hospital only charge the NHS the same fee as it would be at an NHS hospital). That was a good experience too - sedation and entonox gas as I was in quite a bit of pain as the couple of weeks prior, I'd had serious tummy issues so I was feeling delicate inside. When you go, just let the medical staff know you're (understandably) feeling a little nervous, so if they could keep that in mind, you'd appreciate it. I always find a nurse and turn into a big baby and they end up holding my hand during it.

I think for me, it's going to be a combination of: 1) managing my anxiety about being near a toilet all the time, 2) adapting my social and work lives so that I don't get myself into tricky situations that could lead to accidents, 3) looking at what I eat and only treating myself when I know I have a couple of days in the house, 4) taking Questran.

My tummy toilet troubles (my TTT as my colleagues call it), almost ruined my life - but the last 3 weeks I've felt the most positive I have done in 10 years. I am anxious to come across as too jubilant, as if my symptoms come back I think I'll feel like I'm falling into an abyss again. But I'm just taking each day as it comes.

Sorry to have gone on and on... but felt quite cathartic writing this and hope even one sentence may resonate or help you. JB

[Redhead80 in reply to JohnaB]

Thank you JB. Its reassuring when i know other people feel the same I do. I’m wondering now you’ve said it if it was Sertraline I was put on in 2015 not Antrip, I’ll ask the doctor to check my notes. Thank you for your advice, it has been very helpful. I’ve not got to long to go until the colonoscopy so I’ll carry on doing what I’m doing. I’ve been told no more Imodium by the specialist, I’m pleased things are rolling and will let you knwk how I get on. All the best

[Bellyboy13 in reply to Redhead80]

Hi there I have had several colonoscopies, endoscopies and due for BAM scans in May. Just to reassure you that you probably won’t remember the colonoscopy procedure if you have mild sedation. I would recommend you get some nappy barrier cream and apply generously when you have to take the laxative powders they give you. Honestly this will make it a lot easier & no painful bum after😁 Don’t worry just put your mind in accepting you will be on the loo most of the evening emptying in a rush. So wear loose pants that you can get off quick and know it’s just an evening on the loo. Fennel/peppermint teas are soothing on your stomach and try & feel happier you are getting investigations and a possible solution. Good luck but really, it’s nothing to worry about😁 so many people have this done, so you will be ok

[denvajade]

If you have no success with a diagnosis ask your doctor for a test for Dysbiosis.

[Redhead80 in reply to denvajade]

Never heard of this!

[panther1]

After twenty years of possible IBS as well as coeliac disease I was diagnosed with Bile Salt Malabsorption. So live on Omeprezole twice daily which most days does the job but have Questran as well but not that happy with it.