I have been involved with the ostomy community, one way or another, since I was 7, when I attended my first UOAA National Conference with my parents. I’ve also been an ostomy visitor with my local support group since I was 16 and have attended Youth Rally, a camp for children with bowel and bladder disorders, both as a camper and counselor. I was thrilled when I heard about the Patient Coach program from fellow Coach Chloe and Patient Coach Ambassador Molly. I’m one of the rare Coaches who has had their ileostomy since I was a baby, so I can offer new ostomates a ton of advice and empathy. I’ve lived through it all!
My story begins the night I was born. I spent the first six weeks of my life in the NICU, where I had my first ileostomy placed. I was diagnosed with Chronic Intestinal Pseudo Obstruction. From ages three to nine I was on nightly tube feeds, but could tolerate a small meal, or two, during the day. By age 11, my stomach and intestines had basically stopped working altogether. This made me completely dependent on TPN for five and a half years and the decision was made to make my ileostomy permanent.
Now, 12 years later, I’m eating normally, on zero medications, and wearing clothes I never thought I’d have the luxury of wearing out in public; ostomy and all! I graduated both high school and college on time, competitively took up figure skating, and went back to get a second degree in nursing. I decided to become a trauma nurse to allow me to reach an ostomy community that may not come to mind first when talking about ostomies; those who get them after trauma-related accidents.
I am very thankful for all the living I’ve been able to do and not take even a second for granted in these recent years. Luckily, my career allows me to travel a ton! This last year alone I’ve been to 12 different places, including three different countries. I also love experiencing new adventures outdoors like kayaking, skiing, ziplining, hiking, horseback riding, and most recently, scuba diving in Key West. As you can tell, my ostomy does not stop me from living my life to the fullest.
Whether you’ve had your ostomy for one month or 10 years, I want you to know you are not alone!