Does anyone know where I can get advice/help/support specific to 'Bile Acid Malabsorption' (aside from Online Sites)?

[Houseofpain]

I am struggling very badly and it is destroying my life alongside with my other health conditions. Am I allowed to ask for personal recommendations? (ignore if not) There are various conflicts with diet regarding diabetes and BAM and my stress is also increased re other conditions. Is there a helpline I am unaware of? It seems that nobody I speak to ( including doctors) always know that much about BAM and some have had to look it up. I am tired and drained. At this point I would like advice about help and support as opposed to diet etc. Thank you.

[Harley1020]

Hello, so sorry to hear of your problems with BAM. Have you tried a medication called Colesevelam? It’s a tablet prescribed for bile acid absorption. I only have one tablet (625mg) a day which is taken with my main meal in the evening. You can be prescribed more, if required. Unfortunately, I also had to take all fats out of my diet, sweets, cakes, biscuits etc, out of my diet. This has stopped my bile sickness since February this year and I have not had to go into hospital with this condition again. Hope this helps. Take care.

[Houseofpain in reply to Harley1020]

Thank you. I should have mentioned, I gave tried every medication offered and couldn't take them/handle it. I was then just told to take a whole load of immodium every day which I am not doing.

[IBSNetwork Partner IBS Network]

BAD UK is a charity set up to ensure that Bile Acid Diarrhoea (BAD), also known as Bile Acid Malabsorption (BAM) or Bile Salt Malabsorption (BSM), is widely understood by the UK population, recognised much earlier by health care professionals and to help make BAD days better.

bad-uk.org

[jbrking]

Hi I have NAFLD, bam and diabetes. There’s is a website bad-uk.org and a couple of Facebook groups, but you’re right, no one to specially ask unless you speak to gastro. Have you been formally diagnosed with bam? I started on cholestyramine sachets and now take colesevelam tablets - 4 a day taken in one dose at night. I still have diarrhoea once a day but I used to go multiple times so that’s an improvement. For diabetes I take metformin and gliclazide. I also take bp meds, statin and feno fibrate. You also need a vitamin check as the malabsorption can leave you deficient in so many. I have to take B12, D, iron, folic, omega and potassium, plus I take vitamin C and biotin. A lot of doctors and dieticians don’t know enough about bam and add diabetes into the mix you get conflicting information.

[Houseofpain in reply to jbrking]

Thank you for your empathy.I have tried meds and couldn't take them./handle them. I am on something for my diabetes. Thank you for the mention re vitamin check. The clashes in what you are meant to eat are one big headf%$k coupled with my other health conditions makes it all extremely hard.

[Houseofpain]

Thank you for your empathy jbking I have tried meds and couldn't take them./handle them. I am on something for my diabetes. Thank you for the mention re vitamin check. The clashes in what you are meant to eat are one big headf%$k coupled with my other health conditions makes it all extremely hard.

[Edgar77 in reply to Houseofpain]

I was tested for BAM and am 13% should be at least 15%. But I am IBSC no diarrhoea which has puzzled them (and me) so I can't have any of the usual medication for it. They say not to worry as I am border line and control with diet. What diet? Does this mean there is too much bile or not enough. The gastroenterology doc didn't seem to know. My guts seem to burn painfully e ery day. Is this why?

[jbrking in reply to Edgar77]

Low fat diet. Your body releases more bile to digest fatty food. Normally, any left over bile gets recycled back through our bodies. With malabsorption it doesn’t get reabsorbed and gets into the colon. As it should be there, the body will flush it out, hence the water diarrhoea. So the trick is not to overload with foods that need more bile. Eg fats, things with leaves, skins, seeds can also be an issue. Hope that makes sense, tried to explain simply.

[jbrking in reply to Houseofpain]

What did you try? As there are different bile sequestrant meds. I had cholestyramine sachets and didn’t get on with them, so now on colesevelam tablets and am doing ok on them. Before formal diagnosis of bam I lived on loperamide.

[Houseofpain]

I am sorry to hear that you feel a painful burn in your guts. And glad to hear you have no diarrhoea. I honestly cannot answer your questions relating to what you are eating etc- you may naturally be doing a good job of it ( but again I don't know what would be making you feel the gut burn) but and suggest you speak to a specialist if your doc is not helping. I saw a gastroenterologist and am now trying to get to speak to another one for a second opinion.

[Confused01]

Hi,I am diagnosed with BAM & BAD. Currently pretty bad. I feel utterly drained, stomach cramps, headaches and of course I’m stuck in until it calms. I should have shares in toilet roll.

You should be under the care of a Gastroenterologist. If you find you need re referring request this via your go. It’s not a tough diagnosis for GP’s to understand after all.

I also have GERD/GORD and the two clash, as it seems the meds.

Make sure your gp regularly test your B12 especially and other vitamin levels and bloods as BAM/BAD causes seriously low levels which I turn causes other medical problems. Treat your GP like a medical receptionist, know what you need them to do and put to them. That said mines not a great example and often don’t like patients with knowledge 😲🙄.

[Houseofpain]

I hear you and it is a nightmare. I feel like its properly destroying my life out of all the health matters I have. There is never enough time to deal with everything with my doc and they have shown care... but I've lost track of people that need to get in touch. I wanted a second opinion re options with this via a gastroentrologist. I appreciate your toilet roll line. Made me smile.