Question#17

“What was it like when you were first diagnosed with it and experienced the symptoms for the first time...?”

"I-I ….I was actually misdiagnosed for six months until I was sent to a gastroenterologist...

I was 10 years old at the time...so....not knowing what was going on with me was frightening...

It got to the point I was scared to go to the bathroom because I know I would cry and hide out in the bathroom until I calmed down.

Being diagnosed was a relief...I could put a name to it now, and things would actually start to improve."

“And when you felt these symptoms, were they progressively worsening over the years, or did they just - slam on you right from the start...?”

"It starts out as a slow progression......first it was painful cramps....then went I go to the bathroom I would bite into a towel to muffle any scream or cry.

Kaito and Zeito noticed my change in behavior and energy....S-So...one day they opened the door and found me sitting on the ground next to a toilet bowl filled with n-nothing b-but bl-bl-blood and water....

I couldn't move without aching, and I had no energy since I was loosing blood and in a lot of pain...Doctors tried to help, but if anything made it worse...six months later I met my gastroenterologist...."