Allison Rosen here, I am an 8-year colorectal cancer survivor, passionate advocate, and proud ostomate. Fill, my ostomy will be a part of my life forever and I am grateful. To be honest grateful was never a word I thought I would utter in the same sentence as an ileostomy.
If I rewind a bit, when I was first diagnosed with Stage 2 colorectal cancer I had no idea what an ostomy was but I had read enough that I was adamant that I did not want a permanent one. I was about to embark on the hardest journey of my life and had to decide what surgeon I see and what surgical options I had to choose from. My cancer journey which included three open surgeries, two temporary ileostomies, chemotherapy, and radiation was a bumpy road and I learned much about myself. I had a history of Crohn’s disease and even though I was in remission when I was diagnosed with cancer the damage to my colon was already done. From years and years of treatment and inflammation, I was told it fell apart in the hands of the surgical team. I woke up with a temporary loop ileostomy and this is when the true test began. What I once thought I did not want ultimately is the very thing that saved my life. There were many complications, more surgeries but my ileostomy was made permanent 4 ½ years ago and I have never looked back.
Once my ileostomy had a name it became so much more real.
-Allison created the TikTok videos below after being inspired by the UOAA’s Ostomy Mythbusters infographic that was promoted this past Ostomy Awareness Day.
I proudly can say I survived cancer and am now thriving. One might ask how I got to this point and the answer is not a simple one. It involved time, support, and self-love. I would never pretend that there were no tears, screaming sessions, and numerous trips to the wound ostomy clinic, but those all helped me become the person I am today.
No one truly understands what you are going through physically and psychologically more than those who have been there themselves.
One of the first steps for me in accepting my new companion was going on a trip with other cancer survivors who just got it. We all had scars, we all had baggage, but we all supported one another to help each other better understand that we were not alone. It was this very group that helped me feel confident in my body again and helped to name Fill. Once my ileostomy had a name it became so much more real. My constant companion that no matter how annoying would never leave my side, literally. When I came home from that trip I felt empowered and reached out to my local UOAA support group. The members of this group had all sorts of advice, some having had their ostomies for 30 plus years. They helped me continue to heal and understand that I should and could be proud of my journey. No one truly understands what you are going through physically and psychologically more than those who have been there themselves.
Life with an ostomy is not perfect, but now, after a few years, I can give back and help others who are new ostomates. I am part of the ostomy support team at MD Anderson. When I am connected to new patients I remember being in their shoes. Helping them understand that your life is not over, however, it is just beginning provides some much-needed support. One thing I did not expect from helping others is the healing effect it would in turn have on me. Even though Fill is hidden to most of the world, it has a healing power for others as well as to me, and for that I am grateful.
