Please read this - I was misdiagnosed and after years of suffering with IBS I find out I don't have it

[Misdiagnosed_82]

I have suffered with terrible IBS. I am only 34 and if I go out for the day I was unable to eat anything as I had to be immediately close to a bathroom. I had all the tests and was told I had IBS. I explained to my consultant that it was since having my gall bladder out and this was ignored.

I actually have something called Bile Acid Malabsorption. My dad saw it on telly and told me about it. I looked into it and BMA say up to 1 in 3 with diagnosed IBS actually have this condition.

I spoke to my GP and we test the theory out by taking the treatment of colestyramine. I take 2 sachets a day in ornage juice and I am now more or less fine. I can eat whenever I want and whatever I want with very minor and rare consequences.

Gall bladder removel is just one cause. I HIGHLY recommend everyone look into this and if it sounds like you see your doctor asap. The difference it will make if this is you will be incredible. I feel free

[denvajade]

Yes! It's easy to say IBS.

[Misdiagnosed_82 in reply to denvajade]

Seems to be doctor for 'dunno'

[paulak5]

Omg I will tell my mum !! She's had problems for years after having her gall bladder out and assumed it was ibs/ just the way it was because of the gall bladder removal .... Thank you for sharing the info !!! glad your feeling so much better x

[Misdiagnosed_82 in reply to paulak5]

I hope she has it and will be okay.

[paulak5 in reply to Misdiagnosed_82]

Thank you im telling her today x

[Lovemyfamily89]

Hi,

Did you have constipation or diarhea? I have apparently had IBS all my life but actually, what I am is constipated, all my life. I had gallstones and had my gallbladder removed 7 years ago but I've been so ill ever since but the medics reckon they can't find anything wrong. I still have gallstone symptoms and can only eat very small snacks, rather than meals- I live on cornflakes and yoghurt and keep going back but no one takes it seriously. It's ruined my life and my husbands/children so if your treatment might help me, I'd like to find out more. Thank you.

[Misdiagnosed_82 in reply to Lovemyfamily89]

I had diarrhoea. From what I know bile acid malabsorption causes diarrhoea as the body has to much acid but you can have another issue which cause constipation as the body is loosing too much bile acid. Not a doctor sorry so I can't be too much help sorry but might be worth looking into.

[Lovemyfamily89 in reply to Misdiagnosed_82]

Thank you

[jsc2012]

I had exactly the same experience as you, and what was frustrating was that the doctors at the time wouldn't recognize the condition as related to the gall bladder removal. Luckily I've found a solution for my condition which is working perfectly for me.

Very soon after my surgery, I found that I would have extremely loose bowel movements after the first meal of the day. Sometimes this would happen after the first cup of tea or coffee or whatever. I did notice that the volumes I consumed would affect the urgency. i.e. more volume consumed meant more urgency immediately thereafter. This condition lasted for years. I was able to mitigate the condition somewhat by modifying my diet somewhat, such as eating a lot of non-soluble plant matter, eating very small breakfasts, low oils and fats, though at best these ended up working as half measures for me. I also tried a number of binders, enzymes etc.

Unfortunately for me colestyramine didn't work.

Eventually what I've found works perfectly for me, though dosing might need to be adjusted. Basically I start by taking 250mg ursodeoxycholic acid and 2 mg loperamide three times a day. It usually takes three or four days for the morning urgency to subside. Eventually it does. Once I get into a routine where the urgency is gone, and I have a movement only once a day or even once every two days, I cease taking the medication. Eventually, some time later I will have a loose but not too urgent bowel movement, at which point I immediately take 500mg of ursodeoxycholic acid and 4mg of loperamide. This generally returns me to a regular schedule. If it doesn't and the urgency continues, I start again by taking 250mgx2mg three times a day etc.

I've been doing this for over a year now and it's made things much much easier.

Generally, the lower fat/oil and more fresh fiber in my diet the longer the periods of stability last. Hope this helps you and others.

I just want to spread this solution that I sort of stumbled onto which might work for people.