There is so much that goes into living with an ostomy. You have to get used to going to the bathroom in a different way. You may need to deal with self-esteem issues because your body looks different. You learn to become confident in your new “normal” life. In the past 11 years, I've had 14 surgeries including three ileostomies and one colostomy. It took time for me to adjust, but each month that went by I started feeling more comfortable in my own skin.
Then there was the terrifying realization that I had to tell my friends, family, and sometimes even strangers about my ostomy... now I’m back to square one — uncomfortable. Over the years, I've heard people say some very rude and unkind things.
Here are a few examples:
I actually had a friend who refused to hug me.
She didn’t want to get what I had. I was heartbroken, but I knew something like this could happen. Needless to say… I weeded her out.
A family member called me selfish for not wanting children.
I’ve made a personal choice not to have kids. When a family member found out, she said I was selfish, not a woman, and robbing my husband a family. I literally froze, couldn’t move, and just had to swallow my words and hold back the tears. As you can imagine, I do not talk to that family member.
A close friend questioned why my husband loved me.
I had a friend say at a party one time, “No offense, but why would he (my husband) want to marry a girl like me (ostomy, no kids)?” That was tough to swallow — she was a good friend and I had to tell myself she doesn’t know any better. I got in the car and had an ugly cry moment.
A sales associate called it a "nasty poo bag.”
It was my first time at the mall shopping after ostomy surgery, so I was very insecure and terrified. I went to a popular clothing store to try on a pair of jeans. After going into the dressing room, the sales associate kept asking me to come out and look at myself in the big mirror to get a better angle. I politely declined but she kept pushing, so I finally I stepped out wearing a long baggy shirt over the jeans. She began to fit me around the waist and accidentally touched the top of the bag. She quickly said, “What’s that?” I replied quietly, “It’s an ostomy.” She wanted to know what it was and why I had it, so I hesitantly explained. Then she said, “I would have died over getting that nasty poo bag.” Talk about a ‘why me’ moment. For a long time, I had a hard time trying things on when I’m shopping because of that experience.
I’m sharing these experiences because each situation is a teachable moment.
When I find myself in uncomfortable situations, I stop reacting and start listening. Listening is key because if you really stop and think about the crazy things people say, it makes no sense. Why waste time talking to people who have no common sense? It’s better to be calm and prepared to educate.
Now being older, I know it's much better to educate others rather than overreact because of their ignorance. When people are being inconsiderate, I flip the negative situation into a positive. Changing my perspective is one of the most powerful lessons I've learned in life. And the faster I change my own attitude the better off I am. These days when I hear someone saying something offensive about my ostomy, I take in the comment and politely walk away. To those who hate, to those who judge, to those who choose unkind words… this is what I have to do. I’m weeding you out! Even if you’re family. I was taught to treat others how I would like to be treated.
I try to maintain my humor through all of it. I found naming my stoma “Willy” helped with personalizing it more. Humor helps balance me and keeps me grounded. My faith is a very big thing for me. It has seen me through the toughest of times. I'm human, so I do have days when I wish I had my old body back as I stand in front of the mirror and cry the ugly cry. But in those moments I know it's the disease talking and I choose not to own it. Not owning the bad thoughts is how I cope and move forward.
I believe there is a reason why I am here and living this special journey. I am proud of myself for living with Crohn’s disease. I am proud to have an ostomy, aka my Poui-Vuitton bag! It's taken many years to get to a point of accepting that this is my body. It's what I have but not who I am and I will continue to rise up every day and be thankful for my life.