Accepting my ostomy
Published: October 15, 2021
I was 15 years old, just wrapping up gymnastics season and my freshman year of high school, when I got news that flooded my future with uncertainty—after years of battling health issues, I would now need an ostomy bag. I felt scared, sad, and alone.
I remember going into the operating room unsure of what life after surgery would entail; I knew that in a matter of hours, I’d wake up in a new body, a body that I would need to learn to accept. Prior to surgery, I received few resources about ostomies and how to take care of myself. All I knew was that my intestine would stick out of my stomach and that I’d have a bag attached to my abdomen to collect my waste. However, I soon learned that there’s much more to life with an ostomy than going to the bathroom in a “different way.”
Post-op, I could not look at my body. I was terrified to leave my house, self-conscious, and desperate to do anything and everything to keep “it” a secret. I was drowning in shame. I feared that I smelled, that I was gross, and that everyone would see my bag. Unfortunately, my ostomy also wasn't a quick, life-saving fix. I dealt with frequent complications that required more surgeries, which perpetuated the hatred I had towards my body as well as the need I felt to hide from others. My world grew incredibly small and suffocating. My secrets fed my shame, and my shame fed my secrets.
After another major surgery, the complications with my stoma significantly decreased and I began to get my quality of life back. My ostomy was finally changing my life for the better and I stopped begging my doctor to reverse my stoma. With relief came perspective—it took some time, but I started to accept my bag and saw the benefits that I got from it. I was not living in the hospital, I was not taking pain medication around the clock, and I was not in bed all the time.
My ostomy has given me independence, and with that, a part of my life back. Now I can participate in activities that I enjoy, attend school, and complete tasks to take care of myself. I’ve learned to manage my day-to-day life with an ostomy. Even though I have hard days, my ostomy does not control me anymore—something I never thought was possible.
While I don’t tell everyone about my bag, the few people that are aware of it are supportive and don’t think differently of me. It’s important to raise awareness and educate others on ostomies. Getting a stoma is a major physical and psychological adjustment, which is why support and resources are essential prior to (when possible) and after surgery. Conversations about stomas and appliances helps others understand and learn about them, and in turn, helps reduce the stigma that can come with them. It takes time to adapt to living with an ostomy and it’s important to advocate for your needs, be patient with yourself, and remember that you are not alone in your fears and worries.
My ostomy is a part of me, a part of me that keeps me healthier.
Abby Mann is an Crohn's disease patient and a member of the Foundation's National Council of College Leaders.