@roch Hi, I am very new to this site, I apologize for the long word vomit post.
The GI practice that I go to has only said, “just eat what your stomach can tolerate”. Which is then followed up with, “When you have an “episode” do a 48 hour clear liquid reset”.

I have not been able to tolerate even Ensure.
I am now on a NJ Feeding tube in order to stop losing weight.
I am allowed to have broth, jello etc and those are fine as long as I am laying down.

My surgeon told me there was something else going on in my body. He said he was not expecting to find what he found when he went inside and removed my gallbladder, cut my liver away from my gallbladder and then had to scrape my Liver.
There was no mention of anything like this in any of the reports on the CT scans, MRIs, but the ultrasound indicated that the liver was not visible. He had kept me overnight after the surgery to have my GI doctor come in and do an ERCP. The GI never showed up. I was discharged and told to get a new GI doctor that would help. I did but I still cannot eat.

What is my biggest concern?
I was a healthy 65 year old woman that after being hospitalized for my 4th bowel block in May of 2025, I was released and when I came home I could no longer tolerate food of any kind nor could I tolerate standing.
A few months ago we figured out with the help of AI that something Mechanical was happening when I was standing up. AI pointed out that the problem was my medical care team was doing the same kinds of testing over and over but expecting a different outcome without ever addressing the fact that I had the ability to reproduce the same outcome over and over.

I am hoping someone out in the world, had or knows someone who had something like this. That would point me in the right direction for a diagnosis or answers.

I have never been a dramatic person, my husband and I are both USAF Veteran’s and I have never let anything stop me from doing anything. But this… well this is beating me into submission. I cannot stand up without serious and debilitating side effects and do not want to live out the rest of my life laying in bed.

I just need someone to point me in the right direction to be able to get help, to get an answer. I did everything right in my life. Never smoked, never drank, never did drugs and gave up fried greasy foods before it was cool. I have worked out and exercised my whole life. This cannot be how things end for me.

Sorry again about the long word vomit.
Questions, Comments or Criticisms are Welcome.