The system failed me (being misdiagnosed)
I’m 19. I have had health issues since childhood. I was (mis)diagnosed with celiac disease when I was 7 and also diagnosed with hashimotos disease. Every time I had a problem they just assumed I ate gluten. When I was 14 they diagnosed me with anorexia. In reality I was having severe abdominal pain both upper and lower, severe constipation, nausea, vomiting, dizziness, etc. At 14 I was forced into residential treatment. I would always finish my food but couldn’t keep it down. They told me it was normal to have pain in “recovery” but I knew I was in much more pain than everyone else. Of course in treatment centers they pump full of formula via NG tube and that made things even worse. I gained zero weight so my parents pulled me out of treatment. A few months later I went to another treatment center and they would say “your stomach shrunk from not eating that’s why you’re sick” and would tell my mom I was purging even though I so clearly wasn’t. I went home and then went back to treatment a third time. The third time I was SO sick. Kept nothing down, fainting, etc. No one believed me. I went home and kept begging to see drs to figure it out and no one believed me. We went to a dr and I asked about a rare condition called SMAS and she said no it’s just your eating disorder. Months later I went to a specialist and I was diagnosed with SMAS. I was also diagnosed with eds and it showed that my stomach was so stretched out and dipping into my pelvis, even though treatment had told me that my stomach shrunk. I was also diagnosed with gastroparesis, mcas, and more. I ended up with an NJ feeding tube for two months and then had a central line placed to start TPN (iv nutrition.) I had surgery in May 2025 and when they went in it was SO bad. Everything was clumped together with adhesions. They fixed the SMAS, placed a GJ tube, and created an ileostomy, because the constipation was not from lack of eating, it was from my intestines being diseased. That SMAS surgery failed so I had another one in October with a more invasive procedure, hernia repair, reversal of ostomy, separate J tube placement, and removal of my colon. I also had an obgyn surgery because I have two uteruses and one was obstructed. I also have nutcracker syndrome which is dangerous because I only have one kidney. That surgery was successful but for some reason I still can’t eat so I’m still on TPN and using iv meds and pain meds. I often wonder what my life would look like if we had discovered this sooner. I also had a lap surgery to remove an ovarian cyst. The other ones were all open. If you are a parent and your child is demanding they are physically sick, please believe them and get them help. I am pretty much bedbound and when I do leave the house I use a wheelchair or walker. I am on SSI and can’t work. I require home nursing to change my dressings and draw blood weekly. My parents do everything for me. This could have been avoided had we intervened sooner. I have met an alarming amount of people with the same conditions as me who were also accused of having an eating disorder and forced into treatment. I spent ages 14-16.5 in treatment when I should have been receiving life saving medical care. I am now 19 and suffering the consequences