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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

143 Replies

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  • madeline28387
    madeline28387 Unlucky_Shirl

    Posted

    I am so pleased to have found this forum, and so sorry to hear how we have all been suffering. My quality of life has really been affected to the extent I lost my job of 25 years, and unable to claim pension on ill health as I have never been diagnosed with anything.  I have had all the tests and pills, and the only thing that has worked is Questran which I bought abroad after self diagnosis.  Now can anyone tell me where I can get Sehcat test, as my area don't offer it, and I would like confirmation.
    • philippa22
      philippa22 madeline28387

      Posted

      Hi there, I'm so sorry you've lost your job. If you join the group on Facebook under Bile Salt Malabsorption and also checkout the website www.bile.org.uk.

      The Facebook group offers advice and daily support from fellow sufferers. The website has facts and information that will help you and health care practitioners. Many GP's have very little knowledge about this condition. 

      Please join us on Facebook. I wish you all the best. Philippa

  • gary48860
    gary48860 Unlucky_Shirl

    Posted

    I had mine removed in November last year and suffer diarea everytime I eat.  I have to make sure I take immodium to dinners and brunch otherwise I sometimes barely make it to the toilet.  I am unsure what the continued use of these pillss will do. 
  • Bostongal
    Bostongal Unlucky_Shirl

    Posted

    I am the USA & had my gallbladder removed in 2005.  I did not have gallstones or a defective gallbladder. A month later I had adhesions recovered from my small intestine & my small intestine tore at the ileum. 1 week later I had a bowel obstruction which was the jackpot as I spent a week in the ICU, lost most of my small intestine, ileum & cecum. 

    For 2 years I took every drug available and nothing stops the diarrhea, vomiting or weight loss. I am homebound now entirely. 

    I hope you can find something to help you. Many people have had success. 

    Meg

  • beepbop88
    beepbop88 Unlucky_Shirl

    Posted

    Are you able to buy ox bile suppliments in the UK? I buy a vegan digestive enzyme compound because I am allergic to beef and milk and I worry I would have a reaction to ox bile. You might have great improvments with added digestive enzymes.  Three docs I asked said they were not needed but I have seen a big improvement with gas and digestion. I am so sorry to hear you are struggling.  This is exactly what happened for my mother also.
    • Bostongal
      Bostongal beepbop88

      Posted

      I am in the US and have tried Colestid, Probiotics, Octreotide, and so many other drugs in the two years. Nothing stops the diarrhea, vomiting, weight loss or other problems. I have changed my diet - caffeine free, sugar free, gluten free. No change. 

      I now know what I can eat (bland, white foods - low fiber/low residue). 

      In the UK you have different treatments. Some might help you. I hope you all can find relief.

      Meg

    • beepbop88
      beepbop88 Bostongal

      Posted

      Hi Meg! I am sorry you are suffering! I am also in the US and I need to stay away from pork but I was already eating red meat about once a month or less.  The ox bile is available in health food stores.  I use the vegan one as I mentioned, because I am allergic to beef.  I hope you can find relief! Sometimes I substitute a vegan organic protein shake for lunch or breakfast because I just don't want any more digestive drama for the day but I have not had long periods of uncontrollable symptoms. The stabbing pains, for which there is no explanation after abdominal and pelvic ultrasound, gas and swings between being backed up or too runny have been moderating with the addition of the digestive enzymes.  They are over the counter at the health food store also,(Natural Grocers).  Best of luck to you I hope you get a good doctor who can help you properly! K
    • Bostongal
      Bostongal beepbop88

      Posted

      Beepbop - 10+ years working in the Natural/Whole Foods industry so tried those as well as homeopathic & naturopathic doctors. I was seen by the top GI Doctors in the country at Mass General, Mount Sinai & other hospitals.

      I don't alternate ever - only diarrhea (water/foam) up to 30x a day. 

      The list of foods I miss is ridiculous. I too use protein shakes because they help keep the weight on.

      Do you get the kicked by a horse drop to your knees feeling? 

      I have learned to live with this new reality. 

      I hope you find relief. Avoid magnesium - have you tried Calcium without the magnesium? It works for many. 

    • beepbop88
      beepbop88 Bostongal

      Posted

      Ask your doc to check you for C. difficile collitis sad I hope you can feel good soon.  You might need a fecal transplant, something that is used more at some hospitals than others.  It is more effective than antibiotics. Also, C. diff is a common infection to pick up in a hospital. I wonder if you contracted it when you got your gall bladder out.
    • Bostongal
      Bostongal beepbop88

      Posted

      I had C. Diff after the third surgery but have tested clear since then. I have had over 20 colonoscopies. Too many barium CTS too. 

      My understanding is that since I lost so much small intestine along with my Cecil & ileum that I have a "fuctional bowel disorder" I cannot retain vitamins, nutrients or food. But I am tough & Irish so you wouldn't know just how sick I am by looking at me. Thanks for the suggestions. I continue looking for answers.

       

    • beepbop88
      beepbop88 Bostongal

      Posted

      I am not surprised to hear you are irish. Me Too! I do not have the level of suffering you have, but I have had problems with my intestines for 30 years, of various kinds.  I believe its related to a particular immune trait that makes me more reactive to protien. Dairy gives me a bloat and rashes, fatigue and trouble retaining iron and vit D. I am over weight but working on it.  Bust of luck to you. Its hard to know but we are our own best advocates and with these "out there" problems its pretty much up to us to fine what helps us feel better (In my humble opinion.) I am using a low sugar cocoa with acacia in it in place of coffee in the morning.  Who knows if acacia would help you, also known as heart wood. It is supposed to calm intestinal irritation.  Also L-Glutamine is not an essential amino acid but can be depleted in the case of burns or constant intestinal distress. www.ncbi.nlm.nih.gov/pubmed/11453785
    • Bostongal
      Bostongal beepbop88

      Posted

      I am so sorry you too suffer from this "silent" disorder. 

      We do have to find what works, what doesn't & what it's just not worth giving up. 

      I drink electrolyte enhanced water, take plant based potassium when needed, get mega B-12 shots and eat a lot of protein as I am n a low fiber/low residue diet. My Dr & I joke that he wouldn't want to see the junk I now eat but we both know that none of it stays in the body longer than 20 minutes. 

      A GI Dr said he could tell I had malabsorption just by looking at my face.  Of course he had no treatment for me.  If you too have malabsorption you will begin to lose muscle mass unless you find a way to stop it. I never did. 

      I avoid all alternative sweeteners and antibiotics as they can exacerbate this for me. 

      Thanks for the article. I will show it to my treating physicians to get their take (do far it's been you are stuck with this). 

    • MzNat
      MzNat beepbop88

      Posted

      What is the enzyme you're taking called? I am looking for a vegan one and am having very little luck. Any help would be greatly appreciated!
  • rory66657
    rory66657 Unlucky_Shirl

    Posted

    Yes, I have also gained 4 stone in weight. I lost 2 stone very quickly ( 9 weeks) on a low carb diet + 1day a week total fast but have put it back on again. I have just had completely unexpected diarrhoea  accompanied by severe vomiting as well as bringing up nasty yellow/green bile. I have had colonospies (3) folloed by excision of polyps in bowel and am awaiting appointment with gastroentorology consultant in December (with little expectation).

     I am coming to the realisation that g andall bladders are too often removed without neccessity and that patients are not advised of the likely after-effects, which in my case, and that of many, many others have been devestating.

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