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Bile Salt Malabsorption after Cholecystectomy

Posted , 76 users are following.

Unlucky_Shirl
Unlucky_Shirl

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.

14 likes, 143 replies

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  • mario
    mario

    Posted

    hi i had my gallbladder removed in 1990 and have had problems with the bowel ever since. but apart from my very closest family i never spoke about it until last year 2011 in december i had a sehcat test done and was diagnosed with bile salt malabsorption i also have b12 anemia which i think is connected has it is the same site that both are absorbed in. my own research through the net. but even if i was told that i would end up with permanent bowel problems i would still of had the operation because i was ill in the end. 21yrs i suffered in silence due to embarrassment what an idiot i was i feel better just knowing my accidents are not my fault im only 44yrs old now, so i suppose the older you get the less you are willing to leave things ,i think that the ratio of people left with problems after gallbladder removal is alot higher than what is recorded it is just hard to speak about when you are young sorry for the ramble finely ive come to terms with this all the best to you .
  • mario
    mario

    Posted

    yes i put weight on after and have never managed to loose it again and im busy,i go walking the gym and swimming. just easier not to eat if going somewere,so as not to have an accident wether this makes the weight worse probably does metabolism an all that.
    • sally14335
      sally14335 mario

      Posted

      I'm still wrestling with what word to use to respond to you.  I feel so deeply about this "hidden" condition!  This group needs to pat themselves on the back and stay together.  Few people want to hear about this condition.  I do, finally, take the Cholostyrine sp)  and it seems to be helping, only 2 wks on, however, had one, almost incident last week-end.  It often, almost always, follows the first real meal of the day.  I do know what you mean about considering not eating if you are in a situation outside of home.  I don't wish you to get on that program but      we do what we must, sometimes.  Bewell!

    • natalie66184
      natalie66184 sally14335

      Posted

      Hi sally

      I have this condition too, where first meal of the day I have to run to the toilet afterwards and it DOES make you scared to go out anywhere afterwards for at least an hour, or if you go out for a meal, that is also dreaded!  I was wondering what was it that you take for it? and does it actuallywork? Many thanks

    • jill55600
      jill55600 natalie66184

      Posted

      Hi Natalie,

      I read your email re going to the loo every five minutes esp. after food. I had the same trouble, was misdiagnosed several times,but finally - thanks to my partner who is a retired Physician, I was correctly diagnosed with Bile Acid Malabsorption. I am now taking Colesevelam (Cholestagel) as tablets - 3 every evening before bed and It has changed my life around. Please ask your GP to check this little known bowel problem. I can eat/go out and not worry about where's the nearest loo! Good luck I hope this will help you.

    • willgo
      willgo natalie66184

      Posted

      I have this problem after removal of my gall bladder too.I was diagnosed with Malabsortion and given Cholestramine powders that made no difference. So now I have been given Cholestragel tablets that help, but still no answer as I still have "accidents"with Diarrohea, but not when I am out fortunately. I am heading back to the doctor now. 

  • buckers
    buckers

    Posted

    I also have this condition, but I loose weight not gain it, we are all different, not sure if you great people are aware of the help with toilets if you need them, here are a few I have found :-

    The National Key Scheme (RADAR) gives you access to public toilets for disabled people throughout the country. These are very useful and you can buy a key by visiting their website at www.radar.org.uk

    NACC - Card £ 12.00 for the pack www.nacc.org.uk/content/home.asp

    phone apps to find a toilet - www.betomorrow.com/2011/09/02/ou-sont-les-toilettes/ free

    hope this helps

  • dottiepops
    dottiepops

    Posted

    I had my gallbladder removed 2 yrs ago. I've had constant problems with my bowel

    ever since. I haven't lost weight, I've gained it.

    Some weeks have diarrahoea other times I am constipated.

    Been told its a side effect of the op. Some people get better

    others don't.

  • Georgie66
    Georgie66

    Posted

    I just got presribed Colestyramine for this condition .. early days but seems to be helping so far as it helps with the absorption so that food doesn't pass through quite as quickly! Might be worth talking to your doctor about it.
  • trex
    trex

    Posted

    There is more than one reason why people have body parts, namely a gall bladder and doctors play with peoples lives as if they are dealing with mechanical objects taking things out of peoples body and not replacing them. Doctors and scientists can do anything these days but they dont want to create an artificial gall bladder with all its entire functions because it will cost them money. On the other hand they can create artificial hearts and valves - who are they to judge what organs people need or dont need. They tell you that you dont need your gall bladder but as you all know it from experience, you do. If all the people took some action we would all go a long way.

    They could just take out the stones just like they do from a kidney without unecessarily removing it and do the same with the gall bladder and stitch it up inside but nooo, they want to be efficient and save money.....by making patients, you suffer. As you can see the gall bladder is a very important organ, apart from the usual it also has bowel and weight regulation function, it has an affect on hormones and other body parts. After the doctor has done his job in theatre, which is not to cure the problem but to make it worse, which they wont admit to, are the side effects you suffer from this surgery. They usually do not have an answer to your problems after the operation. They will give 101 excuses and blame other things or your other perfectly healthy system. They will not want to admit the side effects are true nor will they want to deal with it anymore. The short answer is you have stones, take out the whole thing.

    Has it not occured to anyone with an average intellience, you need your gall bladder and removing it is not the answer. Even when the gall bladder is removed you continue to accumulate stones. The problem is not the gall bladder. The problem is diet - you need more fibre and water and eat healthy. If you dont do that you're liver will get congested and as result bile flowing from the liver will be sluggish and if there is not enough water and too much of the wrong type of waste it will harden and turn to stone.

    The liver and diet is the cause of gall bladder disease not the gall bladder and removing the gall bladder wont do any good but to make problems worse. The main problem is if the gall bladder is removed bile will flow down through the digestive systen and into the bowels, over time, this will cause irritation and will get worse which will result in bowel problems.

    Patients need to do everything to get a replacement gall bladder if they opt to have it out otherwise go for conservative treatment, if a lot of pressure is applied on the doctors they will do what you want them to.

  • amanda74
    amanda74

    Posted

    i also had my gallbladder removed back in 2011,and last june was diagnosed with Bile salt malabsorption.

    looking back i think i may have had it beforehand,but having my gallbladder removed just made the

    symptoms alot worse.i went from constantly going the toilet to living my whole day running up and down the stairs going at least 20 times a day.

    now im finding i have put weight on, although i follow a very healthy diet,eating alot of fresh fruit and veg,using the slimming world diet, i go to the gym at least 3 times a week,i dont drive so walk everywhere,nd go to aqua fit,yet i cant lose weight no matter how hard im trying. i have been on colystyramene since last june so symtoms are now under control but feel im not getting anywhere.

    • emers
      emers amanda74

      Posted

      I sympathize with you Amanda. I had my gallbladder taken out 4 months ago and my life has been turned upside down. sad I had so many stones that my gallbladder wasn't even functioning and I had no idea that the nausea/diarrhea for the year before that was because of the stones. I've been to countless doctors and no one helps. I've done so many stool tests, and ultrasounds only showed that I was gassy. Everyone pushes you away and says "oh that's normal to feel that way after surgery". I mean who else is tired of hearing that crap?!

      I wake up nauseous every single morning with diarrhea. Some days are so horrible that I throw up so much bile to the point I can't keep anything down..so I have to go to the ER so they can give me an IV and meds to stop it. I can't even get a job because I'm constantly in the bathroom almost every 20 minutes. It's so hard to stay positive when you can't have a normal life. Your scared to eat, scared to drink anything, scared to leave your home... I don't understand how all of us here can feel sick every single day and it be considered "normal". These doctors only care about giving you medication that only causes you problems with another organ down the road. Like seriously?

      I was so fed up with my gastro that I went to my PCP (who is Canadian) and I told him all of my issues. He felt so bad and indeed say that producing that much bile is in fact NOT NORMAL! That I shouldn't be feeling this way and he was sincerely concerned. He said it's not right to push patients away when they are sick and that one of his friends had the same issue and everyone kept pushing him away until finally he went to the ER and he actually had an enormous Absess in his stomach. I mean really?! Luckily my PCP did an ultrasound and there was no presence of an absess but that I was extremely gassy. He prescribed Questran for me to try. I tried one packet of Questran and it lasted for exactly 9 days (keeping my bile under control and my bowels were normal color even!) I thought I found my medicine for life until day 10 came along and all of my symptoms came rushing back like a waterfall. So like any person would do I took another packet..and this time I got the side effects of the drug...I was extremely bloated and had the feeling of going but I couldn't. So it only made me more nauseous. It's hard to eat when you have no appetite at all. My weight fluctuates all the time even though I became a vegan recently and I workout every single day. This is the most frustrating experience I've ever felt.

      Seems to me like all we have is each other on this forum. For those wondering, I started to take Caltrate with vitamin D 3x a day with each meal (breakfast,lunch,dinner) I also take Digestive Enzymes with Ox Bile. Some days I take Prilosec before breakfast because it seems to help just for a while. A family friend of ours is a holistic doctor in New York and he gave me a recipe to get rid of excess bile the natural way (if anyone wants to try it out). I'll let you guys know if it works for me so you all can give it a try. I'm hoping this works, as I've tried so many things. We all seem to be at our last resort and I can only hope that one day we will all be healthy again.

    • tany
      tany emers

      Posted

      You wrote "A family friend of ours is a holistic doctor in New York and he gave me a recipe to get rid of excess bile the natural way (if anyone wants to try it out). I'll let you guys know if it works for me so you all can give it a try." 

      Did it work for you?  I am searching for alternative to doctor/hospital/pharmacy bills. Lost gall bladder at age 20 -carried in for emergency cholecystectomy-believe caused by brominated vegetable oil in Mountain Dew.  Now have PCS.  Hoping you have done well with your anti-bile recipe?

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