Hello, my name is Emily Pierri and I am 18 years old. I have struggled with a rare degenerative bowel disorder called intestinal dysmotility (a disease of the GI tract in which the muscles do not contract normally) since I was 9 years old along with other complex autoimmune illnesses.
In April of 2018 my motility throughout my colon had worsened to the point where I was dependent on a nasal feeding tube. When I started to have trouble even tolerating feeds my doctors knew something had to be done. After extensive motility testing they found out my large intestine was not moving, causing issues in my small intestines and stomach. This meant that everything was getting backed up and nothing could move through.
The doctors said my best shot at a quality of life was to get a loop ileostomy, so on April 13th, 2018, I became an ostomate. Since getting my ostomy I have had many ups and downs. Some ups were that I can finally eat normally again and that it has helped control my intestinal dysmotility symptoms, but some downs include the time that I obstructed just 2 weeks post-op and am still dealing with some small bowel issues.
Overall, I am very thankful for everything my ostomy has given me so far!
I currently live in Dallas, Texas and am finishing up my senior year of high school. After high school I plan to go to college for business. Throughout all of this I have found my passion for helping others going through similar situations and started an organization called Hopeful Packages, back in 2016. Since its conception, I have sent over 140 care packages across the U.S to teens and young adults battling life altering illnesses. I can’t wait to expand my organization and help support many more people!
I am thrilled to be working with 11 Health as a Patient Champion and can’t wait to help support other patients like myself.