Hi my name is Miraya Johnson, I have had excruciating abdominal pain since I was in 7-8th grade. I was dismissed by so many doctors. I have seen 5-6 GI specialist & they all told me the same thing Irritable bowel syndrome also known as (IBS), as well telling me my symptoms are only in my head. They never saw me throwing up from when I woke up in the morning to when I closed my eyes at night. I am sick from day to night with pain. They never saw me being bedridden and missing so much school due to the excruciating pain, nausea, & vomiting. They never questioned my malnourishment. They never cared when I told them my hair is falling out & that my bones hurt. They never cared about the countless ER visits week after week, month after month, day after day. After losing hope for so long. Because of the doctors, they would never listen to my everyday symptoms.
One day, recently I was scrolling through tiktok and found some lady talking about Gastroparesis & I immediately looked up the symptoms and called my GI & he told me It was impossible for me to have it & I said I don’t care run the gastric emptying study and it came back positive for very severe Gastroparesis. So we booked an appointment for the best doctor in the US & I was so excited! We met with my new Motility Specialist in Cleveland Ohio and he was amazing! Although the test was positive sometimes the test can be a false positive so we did a smart pill test and it came back positive for gastroparesis (stomach paralysis) & a slow colon.
Every time I eat I get sick, because food will sit in my stomach for 20 hours and a normal person would be 4 hours. I have no safe food or liquids. Even water causes me to have indescribable pain. My pain constantly changes from all over my abdomen to wrapping around my back. There is a variety of types of pain gastroparesis puts me through including, burning, twisting, dull, sharp, as well as pain that makes me feel like I’m being gutted alive, or when it hurts my stomach to even breathe.
I couldn’t be more grateful to finally have an answer! After being turned away and passed from doctor to doctor. Nobody wanted to look outside the box. I am 0.16% of the world that battles Gastroparesis. I always had minor stomach issues as I was growing up but when I was 13 is when my symptoms took over my body. I am now 20.
Gastroparesis almost took my life last year because I couldn’t hold anything down & my specialist wanted me admitted to the hospital but my primary turned me away. This is not acceptable , we are only human. We deal with constant battles going on for years inside our bodies to be pushed away from doctors. There needs to be more awareness brought to this disease. It not only takes a toll on our bodies but the people who see us sick every single day. We have an invisible illness and doctors need to recognize it.
My illness is an everyday thing for me, not an hour by hour but a second by second disease that will control what I can and can’t do. I cannot work due to this illness. But trying my hardest to complete college. I’ve tried countless diets & medications and even surgeries. Nothing helps my Gastroparesis. I am in bed 95% of the time I just want my life back. That’s why we need to help raise awareness and find a cure, I will not be silenced by the doctors nor by Gastroparesis, I will be heard!
