I've had weekly bouts of awful diarrhoea which has made me so scared to leave the house. I've tried gluten free, dairy free, you name it. Just recently I've noticed a pattern. Yesterday I ate some cooked chicken thighs with the skin on and a chocolate bar. 3 hours later excruciating diarrhoea.
I've brought up bile salt malabsorption to my GP and hes referred me to a gastro but can take 33weeks! Do they offer medication trials for the binders on NHS?
At first I didn't think it was bsm because my diarrhoea was only once a week, but I'm not sure if that's true or not. Plus i still have my gallbladder.
Could this be?
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asbayford
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Hi, I was tested for this myself about 18 months ago. So I although I didn't have it I know a little about it. My cousin has it. Some doctors will give you bile acid sequestrants without having the test and other won't. My doctor wouldn't. But I live near a large hospital that did the test. Not all hospitals have the facilities. I would go back and talk to your doctor about it again if I was you. It sounds possible to me that what you have is BAM, perhaps you can persuade him/her to let you try a bile acid sequestrant while you wait for your appointment.
My brother has this and takes a sequestrant which really helps, but is struggling to get any at the moment. There is a problem with supply. It is possible I have it too, discussed with my GP and asked for a sequestrant to see if it helps. She prescribed something for pancreatic insufficiency, which I don't have. Pretty sure she doesn't know what a sequestrant is, so maybe do your research. When it is available, I think you can get it on NHS. I also still have a gall bladder.
Thankyou so much for your reply! Hmm so a trial run of the sequestrant is definately worth asking for! I had a feeling they may say no due to still having a gallbladder but will see what he says tomorrow.
The only thing that's helped is reducing fat and also low fodmap has helped, it's so restrictive and boring but I've only had one bout of IBS in 30 days so that's incredible! Luckily I'm under supervision but its not a permanent fix! We need the fats 😫
I don't want to distract from your main point (BSM or Bile Acid Malabsorption) and very well done for getting a referral (despite the wait) and I hope the other posters with experience can help you on that.
Interesting the issue is weekly - can you experiment and change your week around to see what its linked to e.g. Food / Drink (both kinds) / Activity / Relaxation
Two silly points, just in case they might help (And apologies in advance if these are really stupid questions to ask given the BSM):
1. Did the GP discuss fibre at all ? So, for the Chicken did you eat anything else with it e.g. cooked veg (I expect they will tell you to eat more fibre, so Chicken on its own probably won't be seen as good by the clinicians). I would also ask the GP about supplementary fibre. There was also no mention of carb content in the meal.
2. The chocolate bar afterwards (if high sugar) I would be very careful with and avoid that, especially on top of a main meal. Assume that may contain high amounts of sugar which may not be helpful with the symptoms you have. Try chocolate with low sugar content e.g. 85% chocolate. It takes some getting used to, but once you are there, your brain will in time forget about the sugar and get hooked on the chocolate.
Also strange question: After eating your main meals, do you have time to relax and let the meal digest, or do you have physical or stressful stuff you need to get on with. If it helps, try seeing if doing things in a different order might help (I know that may not be at all easy)
Funnily enough I don't think I get as much fibre as I should. I've downloaded a fodmap diet today and will try that for a couple weeks but will slightly up my fibre intake with veggies, if no diarrhoea then I know its probably just the diet that needed tweaking.
FODMAP is something I don't totally understand because as best I know you are only supposed to do it for a few weeks under the supervision of a qualified nutritionist. What happens after that I'm not sure. Anyhow it hopefully doesn't hurt to try something for a short time, but then get professional advice, before continuing to make sure you don't end up short of nutrients etc.
Eating lots of veg instead of carbs/sugar etc. of course you are going to lose weight, so hope that's not an issue. I always steam veg to try to preserve the nutrients as far as possible.
They seem to recommend trying lentils and chickpeas, but the latter is not quick to cook (supposedly you can cook a batch then keep in the fridge, but I've never been a fan of reheated foods). I've consumed both in the past but never cooked them myself, so something I need to try at the moment.
P,S, Probably not appropriate to promote something here in a post, but have you read Michael Mosley's "The Clever Guts Diet Book". I was recommended that by an NHS community nurse team. In my case it didn't quite fit my profile, but is a very interesting read. You will grow to love your gut bacteria.
Ernest has a good point r sugar and fibre. I also have to be careful to keep sugar to a minimum or I get the squits quite rapidly. Fibre really helps your microbiome.
I’m so sorry you’re going through this! I totally understand how anxious you will be. I agree with everyone else, but you should ask to get your gallbladder scanned. I have a healthy gallbladder, but I have three little stones in there - my diarrhoea settled down when I found out about that as I immediately cut down on my saturated fats. So I do still eat chocolate, but only a very small amount. I only eat light cheese in very small amounts (like mozzarella or Laughing Cow Light cheese triangles). I’ve switched from full fat milk to skimmed or the 1% milk and I cut out red meat. I’m also wheat free, but that’s another story!
It’s worth a try looking at your saturated fats and see if that helps you. It’s terrible you’re having to wait. Sending big hugs xxx
Pretty much! I still have IBS pain and now constipation is my enemy 🙄. Another thing that helped with my diarrhoea was actually making sure I don’t get constipated. I was getting so backed up, I was having overflow diarrhoea. The way my gastro explained it to me is this: the gut contracts and moves like a caterpillar. If it comes against a backed up mass of poop, it just keeps bashing against it until it HAS to come out....by this point the gut has pretty much mashed up all that poop and it comes out as diarrhoea. Sorry if that’s horrible and I hope it makes sense (I’ve had IBS for so long, I have no shame 😂). I was very, very reluctant to believe this or to take laxatives. I started on Fybogel and then moved onto Laxido. It has honestly helped me. I have far less bouts of diarrhoea and do a decent poop far more often. I get flare-ups due to my menstrual cycle and I think I’m in early menopause. So hormones don’t help just now!
I would try the saturated fats thing first and ask for a gallbladder scan (you shouldn’t have to wait ages for that). One thing at a time and see if that works for you. Hopefully it will. And in the meantime, keep a diary of everything you eat and all your bowel movements. We have to be very clear and quite firm with doctors when we have IBS. It’s so different for every person, it’s important you go to appointments armed with everything that happens to you. Xx
If you have Bile Acid Diarrhoea (BAD) no amount of manipulating your diet will stop it. We can't live without fat after all. If your GP will let you try a sequestrant that's the way to go. Just because the diarrhoea is weekly doesn't mean you don't have the condition. I had completely random diarrhoea for over 40 years and my gastro consultant asked me to trial Questran. The result was truly miraculous for me and I have been fine for nearly a year now. It is life changing to be free of it.
We still produce bile if the gall bladder is removed so saying a person still has a gall bladder is not relevant. My BAD is idiopathic, in other words, no known cause. The gut is very complicated and no doubt, eventually a reason will be found for BAD. Do let us know how you get on. I expect you have seen the website bad-uk.org.
Yes....tell your doctor to prescribe one of these 3 meds for you! They all stop diarrhea in it's tracks and are used for bile acid problems! Welchol, Colestipol, or Questran. I have to take 6 tablets a day (Colestipol)...changed my life...I can now leave the house without the fear of messing myself!
Hi My husband was tested for bsm . had to go private for test as gp said no local test available. That was about two years ago. He uses sequestrants when he knows he's going to be eating out and a large meal particularly but also follows FODMAP diet. The combination has changed his life. We've managed a trip to India which would have been out of the question before. He doesn't like taking the sequestrants all the time. Firstly they are not that nice to take but also they can affect your absorbtion of some vitamins. Not sure if that answers your question. Mary
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