@djfilipiak I can understand your frustration about finding some one to help you. I had a modified multivisceral transplant due to total gut failure. Very few hospitals offer this transplant, I had to go to Indianapolis. I went to IU Health and saw Dr Mangus. He is phenomenal in all things gut and gut failure. Have you considered traveling to get the help you need? He's definitely worth traveling, but you may set up a telehealth call do discuss your case with him. I have a friend that just had bowel surgery after she got so many no's from local providers.