The mysterious stomach pain

The story of Victoria

Hi! My name is Victoria and I’m from Connecticut. In 2020 I was diagnosed with three rare diseases. Gastroparesis, MALS, and SMAS. Since I was 14 years I have been suffering from undiagnosed stomach pain. When I went to my pediatrician, she insisted I was either anorexic or my parents were starving me because I was losing weight. She didn’t take my complaints seriously and threatened to have me hospitalized against my will. After that experience, I had plenty more experiences like it. From Arfid, functional abdominal pain syndrome, to somatic symptom disorder. Every diagnosis seemed wrong. I didn’t know the name of what I had but I knew it wasn’t any of those. I ended up in eating disorder hospitals and programs. On meal plans that I couldn’t finish without excruciating pain and doing therapy that was supposed to cure my symptoms. When the DBT and CBT therapy didn’t cure my stomach pain, I guess it was my fault. But it HAD to be an eating disorder, right? That’s what the doctors kept saying. When I was 18 years old I had just started college. I was living in a dorm, three hours from home, in a new state by myself. As if that isn’t hard enough, I was having undiagnosed health issues. Two years before college, I was in an eating disorder program. I left and was supposed to be cured. So I went to college, my parents thinking it would be fine. Within the first week I had already called the ambulance. This happened many more times after, and many more ER visits. After losing 30 pounds, unable to get out of bed, eat, and walk to class, I had to go home. My first semester was left unfinished, with no credits to show for it. Throughout that winter I continued to lose weight, get paler and thinner. Unable to drink fluids and eat. Now my parents believed me. I went to my local children’s hospital, completely malnourished, just for them to say “follow the eating disorder protocol or go home”, so I went home. They basically sent me home to die. During this time period I searched for a new doctor to take me seriously and made an Instagram. A chronic illness Instagram. On this Instagram, I saw people with similar symptoms as me. Early satiety, stomach pain, weight loss, can eat only a couple bites of food before feeling full? That was me! As a last ditch effort to get the correct diagnosis, I asked my doctor to get me a gastric empty scan. Lo and behold, it was delayed gastric emptying! Also known as Gastroparesis! This would explain almost all of my symptoms. Following that day I had ct scans, doppler ultrasounds, celiac plexus blocks and got diagnosed with SMAS and MALS also! MALS (Median Arcuate Ligament Syndrome) is a compression of the celiac artery in the chest area. SMAS (Superior Mesenteric Artery Syndrome) is a compression of the third portion of the duodenum. It was real, I wasn’t lying or faking my stomach pain. It wasn’t an eating disorder! I was right all along. I’m glad I had the help of Instagram to lead me in the right direction and to help me get the correct diagnosis’. I’m now on a medicine called Motilium for my Gastroparesis and I can eat and gain weight again! I trialed many medicines and this one was my last option. If it didn’t work I would have needed a gastric pacemaker. I’m very grateful that the medicine worked! I don’t know what I would do if I was still searching for answers today, at 22 years old. I’m glad that I was able to be part of a community on Instagram that basically saved my life.