“At 5 years old I was sitting at the dinner table with my grandpa and as I heard him pass gas (or what I thought was gas), I looked over at him and said, ‘Papa, no farting at the dinner table. That’s gross!’ That’s when I saw him turn red, and he hung his head down to continue to eat.
Later that night, I was explained to in great detail about him having an ileostomy bag and what I heard was his stoma passing air through it. He is unable to have any control over it. As I grew up, I noticed my papa always covering up his bag with his shirts tucked into his pants. I saw him being very guarded about any conversation regarding it and when he had a leak, he was ashamed and embarrassed. He would not let anyone help him, including his wife – my grandma.
When I was diagnosed with stage 3 colorectal cancer in May of 2017, I told myself I was not going to hide behind my bag. I wanted to embrace it and live a ‘normal’ life. June 8th, 2017, I woke up to seeing my bag for the first time and it was overwhelming . I knew I would be living with this for the rest of my life, so what better than to name her!
Yes, I named her Petunia – according to some sources, petunias are a symbol of not losing hope.
While still in the hospital, I told my nurses and doctor that I was going to change people’s opinion about pooping in a bag! From that day forward, I have been very active in the ostomy community. I started my own small business – Petunias Ostomy Designs. They are handmade ostomy bag covers.
I started a Facebook page to help other ostomy patients and their family members understand the everyday complications and to provide an outlet to share stories, good or bad. I am also working to bring help to new patients as they adjust to their bags.
When I heard about a young boy from Kentucky who had committed suicide due to alleged bullying over his colostomy bag, I cried my eyes out. As an adult, it can be hard living a life with an ostomy, but I can’t even imagine what it’s like to be a kid and trying to explain it to other kids. We are always looking for others to love us because there’s so much body-shaming of each other, and social media hasn’t always been on our side either. This poor kid had nowhere to turn.
When you look up ostomy, you see a picture of a man with a bag attached to his abdomen and definition of, ‘a prosthetic medical device that provides a means for the collection of waste from a surgical diverted biological system’. It is so hard to find any child-related sites, or any information on how to deal with kid’s emotions after lifesaving surgery. My goal is to help these children and their parents.
I’ve been so focused on adults and now I want to find a way to help ALL AGES – to be a role model for them, create a sounding board for them to speak their feelings, and to know that their entire community and hospital friends are there to help them adjust to their ‘new’ body.
Unfortunately, I know bullying will never end, so I will be working very hard on making ostomies cool for all ages. We are no different than you are! Some of us have been or are a kicker in the NFL, the US Speaker of the House, actresses, comedians, dancers, the US president, or who knows, maybe your next door neighbor who is out running everyday before work.”
Hope Rises thanks Heather Matson for guest blogging for us. Her strength is admirable.