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Unlucky Shirl

Bile Salt Malabsorption after Cholecystectomy

I had my gallbladder removed 11 years ago and have suffered with chronic diarrhoea since, but the condition is getting worse. I've been diagnosed with bile salt malabsorption. Most people lose weight with this condition, but unfortunately for me, I have gained around 3 stone. Has anyone with this condition had the added problem of weight gain. I'm at the end of my tether as I can't lose this weight.

142 Replies

  • Just an update ... Switched to cholestagel and it is definitely improving my upset stomach. Would recommend that you ask your doctor to prescribe and give it a try. Nothing to lose and hopefully everything to gain!

  • I was diagnosed with bile salt malabsorption back in 2002, I haven't had my gall bladder removed, after having my second child in 2001 the symptom's started, back then I spent approximately £5000 seeing a private specialist over a period of 12 months to be diagnosed with this. He prescribed Questran for as long as I needed it, 11 years later I take between 10 and 12 loperamide a day just to control it, sometimes a lot more, it's miserable, and up until recently nothing came up on google regarding the condition. Sorry for intruding, I just feel a lot better (no offence meant) seeing that other people have this condition too xx

    • lisa1973

      I had my gallbladder removed 2 years ago. diarrhoea became a constant until about a week ago. I'm not sure how this will turn out but someone put me onto a simple fix which so far has worked. A week without running to the toilet. Apart from swapping to a slightly higher protein diet, reduced processed foods considerably which isnt a bad thing anyway, TRy this for about 4-5 days and see what happens. Buy something called Lepicol plus. I got it from Holland and Barratt. I use one teaspoon full in a morning mixed with 3 desert spoons of greek yogurt and 1 large teaspoon of 100% peanut butter. (make sure the peanut butter doesnt have added sugar etc,) Tesco in UK sell large tubs of Meridian Smooth 100% Peanut Butter. Mix all together. Make sure you drink a glass of water after it. It has transformed my life. Lets see how long it lasts. 

  • I haven't had my gall bladder out, but was diagnosed with bile salt malabsorption last year after 2 years of them testing for everything else. I thought that having a diagnosis would be the answer to prayers, but unfortunately the symptoms continue.

    I too take cholestagel, but find the side effects (crazy headaches) which I find unbearable, so only take it when I have to.

    I have put on 3 stone and have just signed up for a gym session of 12 weeks to get my core muscles back. I am also about to embark on a series of acupuncture sessions in a bid to try and get some relief.

    I'm 51 and basically incontinent, and I don't want to live my life like this. Little is known about the causes or a cure, so we have to help ourselves.

    I'll post back on here once I've started the acupunture if it is of help to anyone else.

  • Oh what a shame that Questran/cholestagel hasn't worked for you ... if you haven't tried it already, how about having some Kinesiology treatment. I have that on and off and it helps for all sorts of ailments ... Calcium is also good for the colon so might be worth looking into that. On cholestagel I have the occasional blip (usual hormone related!) but am definitely seeing a dramatic improvement on how I was. Good luck and keep in touch.

  • I could cry having seen this discussion. For over 15 years I have suffered from bile salt malabsorption after a cholecystectomy. The first two years I was literally attached to the bathroom. I had test after test until a professor at St. Mary's Hospital in Paddington gave me a sehcat test and from then on it has been Questran before every meal. The reason I could cry is that I have felt like the only person on the planet with this condition. It is so hard to talk about with friends or family. It is an unpleasant way to have to live because even though Questran is a help it doesn't remove all the symptoms and I still have days when I feel extremely debilitated. I was interested to read that another person hear has to have B12 injections as I do as well. But this week I was suddenly plunged into anxiety about Questran when I discovered quite by chance that it has been recalled by the manufacturer! This is an MHRA Drug Alert, Class 2 Medicines Recall. And it was issued on 3rd June 2013. Nobody could tell me anything about why this had happened. So I phoned the manufacturers Bristol Myers who told me it was due to possible contamination with a bacteria. I trawled the internet and found the certificate about the recall and then discovered that the bacteria is Enterococcus Faecium. If you're anything like me, the thought of not taking Questran is rather terrifying. The pain. The accidents. Basically the inability to live a near normal life. So I have always made sure I had a reasonable supply stockpiled. When my pharmacy kept telling me that there wouldn't be any supplies for many months I wasn't initially too worried because I figured I'd have enough. But having discovered this Class 2 Recall I have to admit I'm horrified that my GP hasn't informed me about it. I looked into this further with the BMA and it seems that telling patients about this isn't something they have to do. Enterococcus Faecium happens to be an antibiotic resistant bacteria. I find the whole situation really worrying and I'm quite stunned that the fact that boxes of this medication have had to be quarantined and sent back to the manufacturer isn't considered serious enough for GPs to have to inform their patients that they could be at risk of contracting this bacteria. I'd be really interested if anyone has been told about this too. And thank you so much to the person who started this discussion. It means a lot to know there are others in this unfortunate situation.

  • I suffer from bile salt malabsorption which got so bad a year ago i was referred to hospital, but i still have my gale bladder.

    i had sechat scan and other tests to diegnose as there is UC in my family. i was taking 6-8 Lerpermide a day along with codine, but it didnt help. going loo 6-12 times per day and getting a very sore bottom.

    Questran has been a life saver. i no longer need to plan each day and each moment out of the house around the toilet smile just take one dose with each meal, easy.

    i told my consultant that i was having difficulites getting questran since March (chemist still owe me 1 box from my last percription) and he prescribed Colesevelam instead. he told me it works the same way as questran, but it is in tablet format, a little more powerful and more expensive. it is working, but i have been getting bloated, very smelly gas and bellyache. i never got these with questran.

  • Aneata, I had the bloating etc when i first started the tablet form. Suggest you alter your dose .. i now have one tablet before breakfast and one tablet before lunch (sometimes two if I am having a big meal) and then do not have one in the evening. Might be worth trialling a few different ways of dosage. Hope that helps you.

  • I feel sorry for everyone who is suffering the after-effects of gall bladder removal. Doctors can remove stones from kidneys but they wont remove stones from gall bladder that is so pathetic and the only reason they dont is because it will cost them more in the long run and that is stones will form in the gall bladder again. That is true but removing the gall bladder is not the answer.

    The problem is liver congestion. If we all follow a good proper diet we can cleanse our liver and stop stone formation which actually accumulates in the gall bladder by simply dripping into it and sitting there. We could do even better if the doctors got to the root of the problem rather than just grab the gall bladder and bin it because they think that is the cause of the problem - its not. The gall bladder is just simply a storage sack.

    If you all did you research then you would understand the same, I am lucky I have not gone for surgery although I have stones. Its not painful yet but I have been offered surgery to have it out voluntarily - that is without the pain coming on yet and before going to A&E.

    I have done my research and I understand but I cant live the fat-free life of the yummy food - who cant ? anyway, there is one thing we all need to do is...and that is get the doctors to change their way of thinking - no gall bladder removal but stone removal - which ever way they can but to leave the gall bladder there intact. I am sure you can all see for yourselves the consequnces of gall bladder removal. I am sure there are other ways to zap the stone but it would cost them but the fact is we pay our taxes and they get paid. So, the doctors need to change.

    So, lets start doing something about it - what have you gotta lose ?

  • I am so glad I found this, I have my gale bladder but have been suffering for years. I was diagnosed with bile salt malabsorption in 2013 and also osteopenia at the same time. At the moment I am taking in the morning Folic Acid(slight deficient), Loperamide, 60mg Vitamin D3 and 2 hours after Questran 4g sachet. then in the evening I am taking 10mg Cetirizine(allergy tablet), Loperamide, 60mg Vitamin D3 and 2 hours after Questran 4g sachet. Have so far found this not helping a lot but have now had my dose of Questran 4g sachet put up to 4x a day. Was wondering if people have any recommendations on ways to split it up? as my Doctor has suggested just to double the morning and evening intake, but reading this it looks like taking it at regular intervals may be better?

    Also I am suffering a lot of weight loss now I am using the sachet (2 stone in 5 months) although I am waiting for an appointment with the dietitian in the new year.

    any help or suggestions for a new diagnosed sufferer much appreciated.

  • I have my gallbladder complete with 13mm stone. My doc won't entertain my having the GB out as it will cause my chronic Diverticulitis to explode!

    Having read this board I am glad that I am suffering minimal pain. I agree with not taking out the GB but I don;t know about removing stones! The gallbladder shrinks and expands all the time so stitches would bot be a viable option.

    Kidney stones are made up of different stuff to the cholesterol that gallstones are. You can pass a kidney stone out, gallstones get stuck in the bile ducts, one of mine was and it was not pleasant. They can also get into the pancreas and then you are in real trouble. My stones were caused by taking Levothyroxine for an underactive thyroid and now my colon is full of divertcular things.

  • I have suffered tremendously for five years but suffered mildly for about fifteen prior. Five years ago is when I had my gallbladder removed I was going fifteen times a day and it was pure liquid. I live in the US and they do not do the SeHCAT test here. I've done a lot of my own research since most doctors do not diagnose Primary Bile Acid Malabsorption and just say it's IBS. I started on Questran but it did not help that much and made me sick because of it being a powder. I now take Colestid (Colestipol) or Welchol (Colesevelam HCI) up to 12 pills a day. Because these meds absorb vitamins I take Vitamin A, K, D with Calcium and iron (which are all supposed to make you constipated). I recently added a pain killer that causes constipation. Since most of the pain I was having with the diarrhea was from my bowels spamming I take a mild muscle relaxer. So far this is the best I've come up with but my condition seems to worsen with time. With all these meds that would constipate a normal person for a month I still have bowl movements three times a day but they are not completely diarrhea because of the meds.

    The light at the end of the tunnel for me is that they think our condition comes from a lack of a hormone FGF19.

    They have created a drug that should be on the market in about two years or so that has shown to treat this condition in trials.

    There is a possibility that the drug will be marketed to treat overweight people which leads me to believe lacking this hormone is causing the added weight I've been carrying.

    I hope this information is helpful. I know this is an everyday struggle that forces me to find acceptance more and more every day. It amazes me how not alone we are.

    • sarah27062

      Hi, I found your message on this website, which I note was over a year ago, but I was very interested to read your post.  I have never heard of the lack of hormone FGF19, being linked with bile malabsorption.  However, I am not sure that this applies to me.  In my case I have lost quite a lot of weight since being diagnosed with a SeHCAT test which was done at the Royal Marsden in London (there is a very good doctor there that specialises in damage to the bowels caused by radiotherapy).  I had radiotherapy way back in 1991 for cervical cancer and my problems with diarrhea, tummy cramps, sickness and urgency developed over the years.  I too, take Colesevelam I take 2 tablets 3 times a day after food (625mg) I was told that taking any more than this would not make any difference.  I have 3 monthly injections of B12 but did not realise that this drug can absorb vitamins, so I think I might take a supplement, as I am quite thin and worry about brittle bones (I am 60 years old by the way). 

      Although this drug has helped control the watery diarrheoa I still have days when I have up to 12 BMs and always have to be near the loo. A

      Its great that we can all share our experiences, offering each other support, and hopefully some day soon we can get a "cure".


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