bile acid malabsorption help

Posted , 7 users are following.

I was diagnosed with BAM about a month ago, I have deficiencies in calcium and folic acid, I went back to see my consultant who changed his mind and said it wasn't BAM because I mentioned I had been constipated.I have all the symptoms and have had erratic diarrhoea since my gall bladder was removed two years ago.

Is he right, it's not that because occasionally I'm constipated? It's once in a while but a nice change from going 8 times a day!

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  • Posted

    Dear all,

    I am another fellow sufferer. I was diagnosed about 9 months ago via a Sehcat test and have since been prescribed with colesevelam. I had a result of 7% vs normal at 20%

    I was fortunate enough to be consulted my the worlds leading authority on this and other related conditions, Dr Maxton Pitcher from St Marks and if any of you have the opportunity to I would suggest you request him (based in London)

    I had a nightmare of a journey trying to obtain colesevelam from my gp as it hasn't technically been tested for our condition and is typically used to controle cholesterol in high risk people. After a long back and fourth with the council I have since been able to get hold of it on the NHS. So for anyone who may find themselves in my shoes, a precedence has been set.

    I have found the same as many of you in that at times the medication seems to work a treat, I can finally live a normal life without fear and embarrassment of having to excuse myself every time I eat, as well as spend my entire day uncomfortable and exhausted to a point that I could barely function.

    I still find the bloating to be an issue and I have read that this could actually be a side effect of the medication however from weighing up the pros and cons I would take it. I do not suppose anyone has found a solution to this? I do try and control my food and as many of you have said it involves avoiding many healthy food in large amounts or at all. I often find myself planning a day in so I can eat good (bad for us) on some days and I take the consequence.

    The way the condition was explained to me is that there is currently no cause identified and no cure in sight. The medication works by binding the bile acid in order to relieve the discomfort and allow you to pass it.

    I also wanted to mention for anyone who may not be aware, that folic acid deficiency is part and parcel of this condition and that I have found supplements to work for me at least when it comes to energy levels.

    I have also found putting weight on to be a bit of a problem, could I ask if anyone else is experiencing a similar thing.

    I know I may not have added much to the discussion, i am just greatfull to have stumbled onto this forum and found people who share my experiences.

    Thanks all

    Ricky

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    • Posted

      Hi Ricky. i suffer with ibs-d, colitis, fructose malabsorption & bam. all relatively well controlled now with meds, bit of diet adjustment & recognising when i need rest to prevent getting overtired with makes everything worse. i was diagnosed with bam & fructose malabsorption when my symptoms continued despite "normal limit" biopsy results on latest colonoscopy but visibly looked like proctitis around my rectum/lower end of colon. my consultant sent me for these two tests sehcat for bam & breath test for fructose. both positive. i suffered from almost constant stomach ache/cramps, constant tiredness, constant soreness/burning around rectum/anus, frequent urgent diarrea, very vocal gurgling/sqeaking in stomach, & undigested fruit & veg in my poo. i have a few conditions going on, but i cut out all fruit, most veg, all salad leaves. i can eat (on the advice of gastro dietician) small amounts (handful) at a time of root veg like swede, parnsips, squash, pumpkin, a small amount of mushrooms, & a spoonful of asda cheese coleslaw (bizarelly on that one) without problems. milk is a saviour as i feel nauseus most of morning until i have my bam medication which makes the nausea disappear within 10mins of taking! i am on cholestyramine(questran) for bam; these are sachets you mix with water it looks like wallpaper paste & tastes a bit like junior disprin if you can remember that! its fine. i take 2 sachets in morning at least 1hr after all my other meds & vits(VERY IMPORTANT TO TAKE AT LEAST 1HR AFTER OR 4HRS BEFORE OTHER MEDS AS IT WILL CAUSE OTHER MEDS TO GET STUCK IN YOUR SYSTEM IF TIME CONSTRAINTS NOT FOLLOWED-SAME APPLIES WITH COLEVALESM EXCEPT I THINK TIME CONSTRAINTS LONGER WITH THAT ONE). i found the med for bam to be a lifechanger within just a couple of weeks of starting & i was able to return to work. my symptoms are 90% better. i still get diarrea about once a day, but it is not urgent like before. i have a morning ritual of giving myself at least 3hrs from getting up to going anywhere to allow for med time constraints, & i usually go to poo at least 3times before i leave the house. after allowing my bowels to do their thing & taken all my meds, i am usually good to go for rest of day without problems, & this routine has taken the panic out of my day & helped me manage my daily life. i may get my folic acid levels checked at docs, as i still suffer from constant tiredness, but balance it by reducing my hours at work & getting more sleep than most would need, but interesting you mention this & may help me. regarding your bloating, i suffer from this too, but i have been taking a daily liquid probiotic since last august, which i feel has definately improved stability with the ibs symptoms-milder if & when i get cramps, & i dont notice any undigested food in my poo now (but i have removed alot of the offending foods from diet) the probiotic has significantly reduced my bloating though after about 8-12wks of taking. i have private messaged you with the name of it as moderators wont allow me to name it on here. hope this helps.
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    • Posted

      Ricky, I also forgot to respond to your weight problem with the meds for bam- i have gradually lost weight since being on the meds for bam; i think the reason for this is that on the meds, your body is now breaking down & expelling the fats from our diets more effectively. my hubby has always said to me you dont eat enough or badly to be the weight i am ( i am not obese but would be happy to lose a couple of stone) my weight has dropped a stone in the last year naturally despite not eating much veg , no fruit or salad anymore. the only thing i could say to help you if you dont want to lose weight anyway is try eating more calorific foods (but without going high fat or grease laden as that does seem to aggravate bam). may take a bit of looking into. things like peanuts - have good fats in them & high calories, but i know you cant live on them!! just an example. hope this helps
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