When a 9-Year-Old Girl Told Me What Life With an Ostomy Bag Is Really Like

My worse nightmare of being diagnosed with Crohn’s disease was getting a bag/ostomy. When you have an ostomy bag, a part of your bowel comes out on the stomach and empties your body waste into it. At the time when I got mine, there was such a negative stigma out there that it is gross, not normal, feared and very disgusting. I saw my life fading away. I was going to the bathroom over 18 times a day. Exhaustion, being physically drained and suffering from malnutrition were huge issues and weight was dropping fast. I was unable to leave my house at times, going to school was tough, and work was a challenge. It came to a moment when I was sitting up in my bedroom in my parents’ house, seeing my younger sister living her life, my brother chasing his dreams, my eldest brother starting a family, friends getting married and then there was me. I realized then that I was dodging the inevitable. It’s because I was in straight denial. 

There were many conversations with my surgeon, who is my lifesaver. He helped me begin to see that I needed this bag (my nightmare) in order to see what I was missing out on in life and how this could save my life! Many evenings and nights were spent crying and talking with my inner circle (my family and a few close friends); and at work my coworkers, who spend the most time with me, just wanted the good ole Cate the Great back. I began to see what they were all seeing. I was letting this disease own me. 

Then a beautiful 9-year-old girl came into the office. She had a bag due to her illness and spoke to me frankly and honestly. She said, “Cate, I am 9 and if I could do this, you can do this!” She said she played soccer, swam, and she was living life. I left that room forever changed. I took going to the bathroom for granted, and this beautiful girl made me realize my nightmare could actually be my miracle I so desperately wanted. I could lead an active and healthy life with an added bonus on my side. 

I left work that day and came home and told my parents I think it is time to make the leap. I so badly wanted to stop sitting in my rocking chair watching life just pass me by! I had goals and dreams and doggone it I wanted to achieve them. When it came down to it, fear consumed me. The “what ifs” consumed me — basically the fear of the unknown, and peoples’ opinions I feared greatly. I live my life as an open book and so these fears were overwhelming. 

The morning of my surgery, I stood in front of the mirror and touched my belly and tried to imagine what life was about to become. I cried because I was beginning to grieve this body that looked so perfect from the outside, but in reality the inside was disease-filled and dying and taking me with it. It would be the first time the world will see my invisible illness. I would be judged, talked about, might lose friends (which I did), but, I gained so much more than I ever dreamed.

The next morning I woke up and I was faced with my new normal. So the dream of having a perfectly fit and toned body was no longer there, but what was there were these amazing scars that told a story of courage and strength. To some they may look ugly, but to me they are beautiful. Without those scars and my new designer “poui-Vuitton” bag that I so desperately didn’t want, I would have never found the true me and I wouldn’t have had the biggest miracle… getting to live my life. 

I look at my disease as a blessing, because I now look at life with compassion. I can empathize with others in their struggles. I am someone who knows what it is like to be different and that’s OK. 

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