Bile reflux and gastritis due to it

[Jahida]

Hello all

I've been missing as I've been in severe agony and have lost a lot of weight as I had stopped eating. Finally after an endoscopy I was diagnosed with bile reflux. I was negative for h.pylori so I'm not sure if the previous gastro doctor just put that in for the sake of it. I've lost trust in doctor's and I don't feel like seeing anyone anymore.

I've seen two gastro doctors and both them have said the bile reflux doesn't cause pain. They've just dismissed my pain but only one of them has said I may need nasal gastric feeds due to weight loss.

I've read a lot about bile reflux and joined a few groups and it is amazing how our pain level sounds the same but how little the doctors know about this condition.

I have stopped going out and socialising because I can't eat and have no energy. As soon as food touches my stomach I'm on severe agony for hours....it's on par with labour pain.

Currently I'm lying down in pain and wish things would end. Apparently bile reflux majority of the time occurs due to removal of gall bladder.

I'm just feeling a bit lost and seriously feel like I've just totally lost my life. I've had 6/7 weeks of being bedridden due to pain. My mum had to take over the care of my children and I've had to stay with her for the whole of summer.

I'm back to my house due to school and far away from family so I'm a little stuck. Just literally had some really horrific bland food and down with pain!

I wish there was an end to this but it feels like I'll be living like this forever!

Regards

Jahida

[Michiganpbc]

So sorry you are feeling so sick. I am curious do you have any other chronic diseases? Have your doctors tested you for any liver disease? Is there any pain meds they can give you to ease your pain?

[Jahida in reply to Michiganpbc]

I'm a post liver transplant patient. I had my transplant two years ago and since a year ago been suffering from chronic abdominal pain.

The has GI has said that it is bike reflux but not painful apparently and normal because I do not have a gall bladder but I'm not too sure. I'm getting depressed that I can't eat without being in pain! The only thing I can tolerate is macaroni and fries. So strange!

Thank you

[Michiganpbc in reply to Jahida]

Oh I see maybe get a second opinion if you have another Liver or GI clinic nearby. It took me 3 different doctors/practices to get diagnosed with PBC.

[Jahida in reply to Michiganpbc]

I've seen 2 GI doctors. I feel like giving up now. I can't go out with my children too far from the house due to food issues. Things like jacket potato with tuna will even give me pain and even salads and sandwiches. I'm just so stuck. I feel like I'll never be able to go on holiday because of such limited food that I can eat. I'm still trying to see what snacks I can eat.

I manage a cup of tea with biscuits for breakfast without pain but cereal can give me pain....so strange. Fruits are a no go.

I'll just have to live with it and just somehow manage this life. You'd think a transplant was enough but apparently not.

[Michiganpbc in reply to Jahida]

Oh so sorry, have you see a nutritionist? I saw one when when I couldn't eat she gave me some ideas for eating that I didn't think of.

[Jahida in reply to Michiganpbc]

I will be seeing someone soon and I'll apparently have another test although I do believe it is the bile reflux that is causing me pain. I don't think there are any other issues. But they like doing tests and I'm done with them. I might let them get on with it. Thank you!

[Michiganpbc in reply to Jahida]

Good luck hang in there, let me know how you are doing down the road 🙏🌹🌻

[pear-shaped]

Dear Jahida,

I know this must be absolute agony for you as it has been going on for so long. I know you feel so let down and fed up - but you must get some sort of treatment going and not bothering with docs or clinics is only a loss to you. They have thousands of patients and by the time they notice you haven't been attending - would probably take a few months which again is no good for you.

So, you must keep asking for answers - ask to be referred to another liver unit - which can work on giving you concrete answers and a care plan. If you are getting bile reflux then they need to do something to limit this.

Please don't give up Hun...

Sending you lots of cyberhugs.

Yours truly,

Pear

[pear-shaped]

If all else fails - see the PALs officer in your hospital and put in a formal complaint.

Pear Xxx