Are you in a big city? Are you under the care of a gastroenterologist?
My wife has now developed a terminal illness of the gastrointestinal system. We live in a small regional city. She was receiving suboptimal care and in horrific pain, regularly ending up in emergency being given more and more morphine until they got scared, then more and more fentanyl until they got scared and then ketamine infusion...and out she goes.
It’s only the luck that I am medically trained that I was able to realise the gastroenterologists weren’t providing optimal care and it seems they were happy to leave her in this quality of life simply because it was terminal and they couldn’t cure it, so why bother type of attitude.
I researched who was the most skilled gastro in the country in what my wife had, wrote her a detailed account of my wife’s illness and treatment so far, and her appalling quality of life. This doctor phoned back asking if we could be in her rooms tomorrow. So off to the big smoke. Within a few weeks she had had some more tests, 2 surgeries and a change in her medical treatment. We haven’t had an emergency attendance since then. She no longer lives in bed as before but is out of bed all day. Still has pain and is still slowly dying but her life is so much more worth living now.
So if you’re not in a big city maybe consider going to one to get someone top of their field. And keep trying to find a doctor who cares about your quality of life even if they don’t know what your disease is and may not be able to cure it. Most doctors want to feel good about themselves for curing something, but there are still some good ones who care about improving your life.