behcets

I suffer from multiple illnesses. The main one being a rare vascular disease called Behçet’s that I was diagnosed with over 15 years ago.. It has destroyed my body inside and out. My entire colon was removed and afterward I’ve developed one problem after another. At one point, I was on a ventilator undergoing 6-8 hours of dialysis a day after I went into kidney failure. I spent year being mistreated by doctors. I have been called crazy, hysterical, accused of seeking pain meds, subjected to absolutely horrific abuse from medical staff and it ultimately caused a spiral in my mental health. For the past 6-7 years, I’ve had a great team of doctors(finally) until now. I went through 6 months of chemotherapy for the Behçet’s. It was very difficult, but it has helped the disease tremendously. Unfortunately, it has caused more problems with my gut. Over the last year I am only able to eat extremely bland food with no nutrients. Now it’s becoming difficult to eat at all. All of my doctors think I need to start TPN right away for severe malnutrition, but referred me to the GI doctor to prescribe it and follow me. The GI doctor refused ANY kind of supplemental nutrition. He was rude, hateful and gaslit me during the whole appointment. I am wasting away. I am too weak to shower, drive and sometimes too weak to walk into the next room. My life is in complete shambles and once again, my mental health has taken a dive. Most days I can’t even digest my medication. I’m completely lost and have no idea where to turn, as my other doctors have begun to step away because I’m so “complex”. I’ve researched where to go for help for the extreme malnourishment and I get nowhere. Can anyone help me and:or offer any suggestions? I’ve faced some really difficult times, but I’m seeing any way out of this. Please help!! #behcets #Ileostomy #malnutrtion #haslighting #help