Primary bile malabsorption

[Burnley1234]

I also have primary bile malabsorption whith no retention, so most foods make me seriously ill I am on bile sequestants and powders cannot eat normal food and had chronic diahrea for 7years as well as a host of other problems wondering if anyone whith lupus or auto immune disorder also has this diagnosis I am trying desperately to put this puzzle together so any help greatly appreciated thanks in advance

[Jacqui296]

Hi Burnley 1234

I’m so sorry to hear this as I suffer with the same problem and it’s not nice to say the least. For 5 years I had to work out the best time to go out, was there a toilet very nearby and what I could eat (which was basically nothing as it just went straight through me and felt like I’d been kicked in the stomach by a mule!). It felt like I’d spent half my day on the toilet and the other half curled up in pain.

One I’d had enough and practically demanded my GP send me to hospital for tests, so after 5 years of unpleasant and weird tests (the last one being radio active!), I said this has all happened since I had my gall bladder removed, which they left too late and it ruptured! As soon as I said that, the surgeon said it was bile malabsorption. So I take the Questran (Colestyramine) sachets every day, I’m down to 1 a day but can take up to 6. You didn’t say what medication you were taking for it but if you’re not taking this one then ask them to change as I was told that none of the others are not good enough. I can now eat a varied diet but nothing greasy/fatty or spicy.

I hope this has helped in some way and this is not linked to my Lupus.

Take care and hope to hear from you.

Jacqui xxx

[Burnley1234 in reply to Jacqui296]

Yeah thanks Jackie I have alreadybern on colestramyne sachets no impact at all just severe stomachs pain and wanting to vomit got put on tablet version but they too making me worse, I also had nuclear c cat showed 90% failure plus no retention of anything back through blood, I cannot have dairy , fats, seeds nightshade veg any refined or tinned food nothing fried , all this on top of autoimmune disorders as well even consultants said can only be (maintained) so no idea how to break this cycle so thanks for reply and showing carex

[Jacqui296 in reply to Burnley1234]

Hi

My god! I thought I had it bad but you have my total sympathy! I wish there was something they could do for you and give you a better quality of life.

Take care and IF they find a cure or at least something to help you, please let me know. xxx