Malabsortion of Bile Salts

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Hi

I am new to the site and hope you can offer some advice, 5 years ago i had my Gallbladder out 2 days after the op recovering at home i had a sudden sharp pain in the center of my back and down my right arm i was taken to A&E where i was rushed to theater the Surgeon hadn't clipped off my Bile Duct correctly this led me to have a Lobotomy cut from the Rib cage down to the Belly Button and when they opened me up i had 2 pints of Bile floating around inside my Tummy, I spent 2 weeks recovering in Hospital and was was very poorly.

Since then i have had Diarrhea several times a day and spend my life around a toilet I have had Colestramine and Questrian sachets but nothing helps, I am seeing the Consultants in a couple of weeks to see if he can offer me any new treatment I also have Malabsortion of Bile Salts my question is.... are there any new treatments out there

Thanks JC

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  • Posted

    I can't help you with this but I am a member of Bile Salt Malabsorption on Facebook

    It is brilliant forum

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  • Posted

    Hi, I'm sorry to hear this. Although the Colestiramine helps me some of the time it certainly doesn't take away all the symptoms. Have you been offered an endoscopy and colonoscopy? It was from the biopsy taken that I found out that my bowel was inflamed and was given steroids. The combination of those and three sachets of the Questrian a day has improved things. No-one who hasn't been through this can understand quite what it is like to have your life ruled by where the nearest loo can be found. I do hope that they find something that will help you.
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  • Posted

    Hi

    Thanks for your REPLY, yes i have had and colonoscopy and endoscopy with Biopsy's taken, also I have had the Nucleon Capsule to check for Bile Absorption the biopsy's showed wide spread Diverticulitis i was given steroids but unfortunately i had to stop them due to a bad reaction, I hope there is some other drug that will help then i can get my life back.

    Thanks again

    JC

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  • Posted

    which hospital was this ? and which doctor ?

    sue the doctor, or take out a lawsuit if you can.

    If you cant afford that at least you can name and shame them

    if you want to do this send me a message as i cant type url in a post.

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  • Posted

    Hi

    Tried the suing but was told not much chance of winning

    The operation was done in a private hospital due to there being no NHS beds available. A NHS surgeon redid the botched up op to seal the bile duct left open by the privategeezer. There is nothing I can do if I named the hospital no doubt they wpuld sue me and probably win.

    Thanks for the concern

    JC

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  • Posted

    I used to have a posh friend who wouldn't touch NHS, she went private and went to Harley Street but was furious when her blood tests were done by the consultant's receptionist!! Hahaha
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  • Posted

    If you want to go private to jump the queue or coz theres no beds, its worth doing the research on the clinic/hospital and doctors 'thoroughly'.

    I dont trust private medical as the rules are not rigid like in the NHS. In the NHS they would have to answer to the government. Thats why its called a 'National' Health Service.

    Private medicals are overpriced to make you feel they are top-notch, but thats not always the case, they're just after your money for the same service (in the major hospitals in London).

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  • Posted

    Hi Trex sorry about the above post i have been in the Lake District and the reception was awful, anyway i would just like to try to put a few things right regarding Private Hospital, I had been on the NHS list for 2yrs waiting for my Operation to have my Gallbladder out the hospital were told to get there waiting lists down so the NHS decided to pay for several of us to go to a private hospital because there were no beds in our local Hospital available we accepted this and all went together on the same day for our ops, Unfortunately i don't know who did my OP i was just one of the patients on the conveyor belt that day to have the procedure done, the morning after the OP i was sent home this is were my problems started.

    In the end after 2 days i ended up back in my local Hospital for a Major operation to control the Bile Leak with the Surgeon who should of done my operation in the first place.I have been an NHS Nurse for the past 20yrs and i can honestly say i would never use a private hospital again.

    JC

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  • Posted

    This is why I'm so afraid to be opened up... it's hard to trust someone when you're allowing them to cut inside you.
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  • Posted

    I'm also an NHS nurse and trained in 1983. I however took ill in 2009 and collapsed completely. The NHS managed to miss what was wrong with me completely and it was only when I saw a private consultant that he did the same tests and found a massive tumour. I was operated on the next week. I was so grateful to him as he was fantastic. Since around 7 weeks after surgery however, I started having chest pain when I ate anything and then had diarrhoea several times a day. It got to the stage where I could eat nothing but oatcakes and oatibix without getting the chest pain. That was in Dec of 2011. I am still seeing endless consultants now to try and find out why I have this pain. I had several blood tests done and a hydrogen breath test. These came back positive. This might be test they could do for you Jeannie? I have bile acid malabsorption and also small intestinal bacterial overgrowth which I believe can be caused by surgery. I take cholestramine twice daily and had a course of antibiotics for 2 weeks. Going back for another breath test in few weeks time. It's ruined my life I'd have to say, I've lost my job, got chronic fatigue and have a really bland diet. The meds are helping with the back and chest pain tho. I'm really confused as each doc seems to say differently! I think that it depends on who you see privately. They are all mainly NHS consultants anyway just working out of hours so they're not skipping queues nowadays. You have a better chance of suing a private consultant. Check your house insurance as there is usually a part there covering medical negligence, but when I tried to sue the NHS doc I was told you need to start if off yourself with £50,000 so that wasn't going to happen. I have great sympathy for you as my life is pretty rubbish too and it's hard to keep positive.
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  • Posted

    I am so sorry to read these posts and can't imagine what lies in store for me if I get rid of my GB.

    I am with a doctor who is now very matter-of-fact and leaves every division up to me.

    I am experiencing sunshine yellow diahorrea every morning which I believe is called a 'bile dump' I know when I go to the doctors she might finally give me the stuff I need to mask the symptoms which she forgot to giveme the last time I went.

    I feel totally wretched and I am nowhere near having the problems that you two poor ladies are having.

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  • Posted

    @jeanniepannini: i was wondering what 'KJ' meant, lol

    I guess its a different experience for everyone but i think if you are in a major London hospital the chances are better, the 'patients on the conveyor belt' example is a good one, my recent hospital experience felt like we were all a large herd of sheep, everyone bundled together - it was a suprise to everyone being told to come at 7am when we all found ourselves being hereded from one place to another. Then it was a room full of everyone (maybe 80 people) all being called out to be assigned a bed then wait for your turn in a 'holding-bay' (similar to airliners in an airport) on trolley to enter theatre.

    The whole process was like a conveyor belt - doctors doing there operations one after the other using 9 theatres.

    but being a NHS Nurse for the past 20 yrs should give you some insight into the medical world ? private and NHS

    Although for me i find the NHS more reliable, mistakes or failure to diagnose could have several factors like lack of experience, junior doctor, personality-behaviour-thinking trait which means there are so many doctors with different characters and expertise even then we are used as guinnea pigs. Also 'conveyor belt' - they just dont want to spend enough quality time but go with their diagnosis from your symptoms.

    Ever wondered why so many doctors want to practice in UK ?

    with their newbie lack of experience they cant practice in their countries, the rules are tougher. Its easier in London because most of them are 'teaching-hospitals' which is a hotspot for recently qualified foreign doctors and means guinea-pigs for us. Its a joke because of beauracary good senior doctors are leaving for other countries and we getting juniors disguised as proper doctors but this is more in the private sector.

    There are good doctors in the private sector but its easier if you are a celeberity/icon, then you always get the best 1st time round.

    @designergirl12: i think you made it pretty colourful that when i wake up and its a nice sunny morning i'll be thinking OMG! 'sunshine yellow diahorrea in the sky, LOL

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  • Posted

    Trex, your post makes fascinating and absolutely logical reading. Students coming here, conveyor belt hospitals, it is frightening to think that after you are seen by your doctor on a one to one basis you are treated like cattle going to slaughter. I had this experience once in St George's hospital in Wandsworth and vowed never to go back there again.
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  • Posted

    thanx, i think cattle going to slaughter is more closer the imagination then mine (just dont think too vividly as we're not all going in their to lose our heads, lol)

    hows your health been anyway ? doctors treating you better ?

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