themighty logo

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. 

Banner inviting you to join the new Crohn's & UC Support Group

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. 

man and woman in front of mirror showing ostomy bags
Cate showing her ostomy bag with her husband, who’s showing off a bag as well for support.

The Mighty is asking its readers the following: Describe the moment someone changed the way you think about disability, disease or mental illness. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.