Help Me Overcome Rare Digestive Disorders

Hello, I am 22 years old. When I was 21, I became sick. It first started with not being able to hold down food, then i stopped tolerating water. It got to a point where I couldn't eat or drink by mouth. After mouths of doctors appointments, tests, and procedures, we found out I have gastroparisis and mals. Gastroparisis is where my stomach muscles dont contract they way they should so food sits in my stomach for much longer than it should (sometimes even days longer.) Mals is a very rare condition where the celiac artery is being compromised by ligament that holds your aorta to the spine. That compression leaves vital organs (such as the stomach, intesines, gallbladder and pancreas) without the adequate blood flow to function accordingly. Because of all my conditions, I have been feeding tube dependent. Currently I am not tolerating tube feeds (leaving me with no stable source of nutrition). I have been following closely with sanford, but sanford has used all available options and medication. So sanford has sent me over to mayo clinc in hopes for some answers or some more ideas as too how to better help me so I don't keep declining. I am currently unable to work as my symptoms are too unpredictable.