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bile acid malabsorption help

Posted , 8 users are following.

emma15794
emma15794

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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  • looloo43
    looloo43 emma15794

    Posted

    Hi Emma, I too have BAM which was diagnosed with a sehcat test at hospital If this test is positive it shows you are losing too much free bile acid through your colon causing chronic diarrea, urgency, stomach pain, & rectal soreness. I was put on meds for it & it controls all the symptoms. did you have this test to diagnose & if so, was it positive? Are you on any medication for it?
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    • emma15794
      emma15794 looloo43

      Posted

      Well my result came in at 6.3% which I believe is under the normal range of 10%. However despite getting letter on the hospital staying I had malabsorption he said I was borderline ans was very reluctant to prescribe my medication. He did in the end but also gave me mebeverine which my regular gp had taken me off months previous.

      He said I couldn't have malabsorption as I mentioned I had been a little constipated, but when I eat vegetables and no fat that's what happens! I'm so angry and annoyed I just want to have an answer and to stop going to the toilet 6 times a day!

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  • looloo43
    looloo43 emma15794

    Posted

    Hi Emma, you didnt say what med he put you on; I am on questran sachets that you mix with water, & IMPORTANTLY you have to take these either an hour after other meds or 4hrs before. The capsule form are worse timescales which is why i opted for the sachets. I take 2 together in the morning an hour after my other meds. I take 1 at night an hour after my dinnertime meds. this has alleviated the symptoms 90% of time. I also have colitis(under control with meds) ibs-d (try and manage by avoiding foods that trigger it) & fructose malabsorption (diet management). I can only eat about a handful portion of veg-only mashed swede, baked butternut squash or parsnips (boiled or baked). I wasnt eating any veg as it went through me like it went in, but have recently seen a gastro dietitian, who suggested trying some of the root vegetables in small portions & see how i get on, which i have been fine with so far. fruitwise, again any fruit or fruit juice caused me diarrea, stomach cramp, & came out undigested, so dietitian suggested trying canteloupe melon, small bananas, & kiwis-again in small 80g ish(handful) amounts. I have tried the kiwi in a smoothie with yoghurt & splash of milk to liquify a bit-1st time bit of diarrea, 2nd & 3rd time ok with it. i have a double whammy with ibs & fructose malabsorption as fruit & veg cause symptoms in both conditions. You could try these more gentle fruit & veg in small quantities & eliminate the other fruit & veg for a few weeks & see if that helps you. also fibre can bizarrely sometimes cause lots of toilet trips in a day if you cant break it down properly. i have given up my beloved porridge & switched to white bread, which has also helped. i found fibre would make me remarkably bloated. I am 1mth into a 3mth trial of a liquid probiotic called symprove which has been clinically proven by kings college hospital to help sufferers with digestive problems. so far it is helping to reduce my constant bloating- hope to see more improvement as time goes on. The only time i get constipated & its not really constipated just very firm & a relief to go is if i have had pain killers with codeine in. I couldnt go anywhere before the bam was treated with questran for fear of toilet accident, & was off work for months, now i am working again, go out when i want to & lead a normal life, apart from not being able to eat such healthy food as before as it causes symptoms. hope this helps hun, do ask any more questions if you want. x
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  • emma15794
    emma15794

    Posted

    he begrudgingly prescribed chloestrogel which I haven't taken yet as I'm waiting for a referral to someone who knows what they are talking about.

    today has been horrid, 10 trips to the loo. Monday I was out shopping and almost didn't make it to a toilet in time. I'm exhausted and down and can see no light at the end.

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    • roo62
      roo62 emma15794

      Posted

      Emma, it sounds like you may have postcholecystectomy syndrome.  I have had this for 19 years along with microscopic colitis and it has really affected my life.  I take colesteryramine powder once a day and it has been a huge blessing.  I can now have a job, eat and maintain my weight.  Before I got this medication I had lost 20 pounds in 3 months from all the diarrhea. I got down to 85 pounds and I was in my 30's. I couldn't leave my house.  I would be in the bathroom constantly even if I didn't eat anything because of the bile.  Please talk with a doctor about this medication.  It binds the bile together so it can pass through your system without aggravating the lining of the colon.  You will find this medication a blessing.  I mix it with vitamin water but you can mix it with water or juice.  I only use maybe 3-4 ounces of water to mix with the medication.  Don't forget to take it though or you will be messed up for several hours.  If I forget and eat something first I am in trouble.  I have found no ill side effects from this medication.  Please convince a doc to let you give it a try...it will take a day or two to get into your system good but just remember to take it every morning before you eat anything and then wait about 15-20 minutes and you can eat.  It's a good solution to a horrid problem.
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  • looloo43
    looloo43 emma15794

    Posted

    Hi Emma, sorry to hear you are so low & experiencing bad symptoms. I really do know how you feel from my own experience with this condition. Personally, I would try the cholestrogel as directed on prescription label while you are waiting for your next referral to come through & see if it helps your diarrea & frequency of toilet visits. Your next doc will probably ask if you've tried it yet. when i started my med for bam, I did the 1st week on half the recommended dose to minimise any side effect(there aren't many anyway) & on week 2 went up to the full prescribed dose. Hope this helps, keep your chin up, things will get better.x
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  • syedm
    syedm emma15794

    Posted

    Hi guys , I have also suffer from BAM which started 3+ years ago and I done  many test but Unable to find the cause. Few things that helped me was Cholestyramine (  popular medicine for this condition but may cause constipation ),  Fobmap diet (  need to see a dietician for this diet),  Imodium, gluten free diet   And a medicine called ciprofloxacin which is normally for a  condition called sibo  infection/bacteria  in the guts . I also visit a  gastroenterologist specialist called Dr Julian Walters in Hammersmith Hospital in London .  He is well known to treat this BAM condition. I was told by my gastroenterologist 1 percent of UK  population suffer from BAM. The main cause is unknow aswel as the cure,  there are only medicine and  lifestyle changes to maintain the symptoms  . I have been apart of research for BAM  for new medicine .  The cause of BAM  is a deficiency in the liver called  fibroblast growth factor 19 (FGF19), and lower levels of this hormone result in overproduction of bile acids, which are more than the ileum can absorb. A trial medicine was tested to  increase the hormone FGF19 and it worked but   Not available any time soon due to some regulations issues .  A new tablet form of Cholestyramine which bypasses the stoomach and opens in the intestines to avoid side effects this will be available soon . I recommend you not to smoke ,eat well cooked foods ,  avoid junk and processed food and don't let thing get to u mentally . 

    I hope this help

    thanks 

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    • looloo43
      looloo43 syedm

      Posted

      Hi syedm, your post is very interesting. i am on questran (cholestyramine) which is great but the time constraints with other meds are a bit tricky sometimes especially as i do all kinds of shift times at work! i recently had a 3wk cold & taking meds to relieve cold for work in line with questran was tricky & had to set alarms!! the new tablet form you mention - will this have less time constraints with taking other meds do you know? my gastro has never tested for the fgf19 thing just ordinary liver function, is this a new thing & something to ask about when i next see him? i suppose either way you look at it, you would still have to take a med whether it be a hormone increase med or cholestyramine? very interesting info, if you find out anymore in due course please post on here. look forward to hearing to your answers to my questions. p.s i am now 2mths into my probiotic & currently only having to take 2 sachets of cholestyramine(was 3) this last 10days along with 3.75g balsalazide for colitis daily to keep my bowels in normal order.(virtually no diarrea & average 3 bm's per day)
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    • syedm
      syedm looloo43

      Posted

      Hi,

      My BAM was dignosed by having a sehcat test.

      I was told be my gastrologist to stay off any type of aspins and pain killer as it may make diarrhea worse . The tablet form of (cholestyramine) came in a capsule shell and i was told by my gastrologist that many people can not tolerate the powder form due to side effects so the capsule will bypass the stomach so people can tolerate it more. Colesevelam tablet is another BAM medicine which works for some people but didnt for me as i cant tolerate tablets.

      Most Doctors are aware of FGF19 deficiency when BAM is present but what is the main cause of this deficiency is unknown research is still in progress.

      looloo43 sounds like u are managing your symptoms and diarrhea very well also you are able to work which is great hopfully your health will be back to good working order soon but be aware of nhs the moment you mention your symptoms are being well controlled nhs will take less action on investegating your cause of BAM.

      I will be apart of more research in the future in imperial college Hammersmith hospital w12 london and i will keep everyone updated .

      Here is some more information regarding BAM hope it helps.

      https://en.wikipedia.org/wiki/Bile_acid_malabsorption

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

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  • emma15794
    emma15794

    Posted

    that's really helpful. so far I've been trying to regulate it with diet. I am reluctant to take the tablets as I hate being constipated it makes me irritable and bloated.

    the one thing I was confused about was the DR at hospital saying you don't get constipated but my own GP said you will get it, it's very unpredictable.

    I was on holiday last week and it seemed to be okay I only had one day where I had to go back home. but this week so far it's been every day sad

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    • syedm
      syedm emma15794

      Posted

      hi,

      i have read in many reviews on BAM that once gall bladder is removed bile acid diarrhea is common as the gall bladder is ment to hold the bile acid and release when needed. Bile acid is needed to break down fat so the less fatty foods you eat the less bile acid will be released. As i menttioned above try stay away from aspins as they make diarrhea worse in BAM patients . U mentioned about doctors saying you don't get constipated but when i took cholestyramine or colesevelam i got constipated and it made my life hell. Everyones body is different some may get constipated and some may not so for your doctor to say you dont get constipated is wrong. You should try ask your doctor to refer you to dietician and see what other foods may effect you.

      hope that helps

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    • roo62
      roo62 syedm

      Posted

      I don't get constipated taking cholestyramine powder. It's a short acting medication hence having to take it daily.  I am happy to finally have a formed stool and for the most part no diarrhea.  IF, and that's a big IF, I feel any constipation..(maybe 3 times a year) I just skip a dose and that definitely takes care of that problem.  I have taken colestid tablets in the past that were huge yellow pills so hard to swallow, it's the same thing really but in a different form.  I found one aggravating side effect from that and was happy when a new doctor suggest I try the powder...Now my life is so much better.  At the rate of losing 20 pounds in 3 months, if I didn't have this medication I might live about a year.  I weigh about 100 pounds now, I'm 53.  This medication is literally my lifeline.
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  • nhow
    nhow emma15794

    Posted

    I haven't been tested for BAM but have the same symptoms...which began when I had my gall bladder out about 15 years ago.  I am now taking cholesevalem but it doesn't entirely prevent diarrhea.  I find that garlic makes it much worse.  Hard to avoid.
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  • ricky56219
    ricky56219 emma15794

    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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    • looloo43
      looloo43 ricky56219

      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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    • looloo43
      looloo43 ricky56219

      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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