What is this?! Nausea, feel drained ... Constantly

[Thecatgotmytongue]

For years now my brother has long periods of feeling really really sick, feeling completely drained, tired, abdominal pain, acid feeling in stomach, occasionally blood in stool ...

He's seeing a consultant who says possible gastro motility issues and ibs. He's had all the tests, cameras up and down, scans ... He's taken lots of different anti nausea/sickness medication, they don't touch it.

How does he go about seeing a different consultant who might take it seriously?

He can't afford to go private.

What on earth can it be?

Also possible liver problems, although told no need for concern, but sometimes goes a bit yellowy.

He is seeing a dietician next week.

In the meantime any suggestions appreciated!

[Badders123]

Gilbert's syndrome?

[Thecatgotmytongue]

Thanks. His bilirubin was raised in a blood test, approx 58 ..

The symptoms fit, but the doctors have told him it's not a problem. No one seems to understand that just because they think it's not life threatening, it still affects him. He's depressed and struggling with the symptoms. He has to take an anti depressant just to be able to eat so that he doesn't lose too much weight. It's no quality of life at his age.

Is there anything that can be done about Gilbert's syndrome?

[Badders123]

Not as far as I'm aware, unless your bilirubin is very high
I have it and I know it affects me - Drs know very little about though
I'm sure if you google there is a support forum but I can't remember what it's called, sorry

[Badders123]

Gilbertssyndrome.org.uk

[HisNameWasPrinceAndHeWasFunky]

Has he tried a LOW FODMAP diet.
It changed my life within a week after suffering from both low and high grade IBS for a long time.

It is successful for 75% of IBS sufferers so is worth a shot. You do have to be strict about it though.

[HisNameWasPrinceAndHeWasFunky]

Please don't underestimate how wretched IBS can make you feel and how debilitating it can be.

[Thecatgotmytongue]

The doctors do say it's ibs. He's cut a few things out like most dairy, but when he feels okish, he eats anything.

[HisNameWasPrinceAndHeWasFunky]

Well that sounds positive - that he has good times.

He really needs to do the low FODMAP for 8 weeks and then add back groups one at a time to see what he can tolerate and what he cant. The dietitian he is seeing will probably recommend the diet too.

stanfordhealthcare.org/content/dam/SHC/for-patients-component/programs-services/clinical-nutrition-services/docs/pdf-lowfodmapdiet.pdf

This book is excellent:
www.amazon.co.uk/dp/0091955351/ref=pd_lpo_sbs_dp_ss_1?pf_rd_p=569136327&pf_rd_s=lpo-top-stripe&pf_rd_t=201&pf_rd_i=1615190805&pf_rd_m=A3P5ROKL5A1OLE&pf_rd_r=PVMRS8ZHVQREHVASB9DJ&tag=mumsnet&ascsubtag=mnforum-21