What I Do When Strangers and Friends Make Cruel Comments About My Ostomy

There is so much that goes into having an ostomy. You have to train your brain not to use the bathroom as much, you have to get through self esteem issues because your body is so different and you have to become confident in your new normal. It takes time, months or even years to feel comfortable in your own skin. Now when you add on the rest it can be overwhelming and terrifying. You have to tell friends, family and strangers. 

I have had the cruelest of the cruel said to me, especially in the beginning. Here are a few examples of people saying the wrong thing. 

I actually had a friend who refused to hug me. She didn’t want to get what I had. I was heartbroken and I knew something like this could happen. Needless to say… I weeded her out. 

This is a sore subject for me: When it came time for the personal decision of choosing not to have kids, I was called “selfish, not a woman, robbing my husband a family, etc.” I couldn’t move, I just had to swallow my tears and words that I had. I was brought up to treat others as you would want to be treated. As you can imagine I do not talk to that family member. 

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 if I couldn’t give him children?” 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. I just had to believe there is a reason why I am here and living this special journey. 

I still to this day have a hard time trying things on when I am shopping. I went into a clothing store (a very popular clothing store) and I wanted to try on a pair of jeans. Now this was my first time out shopping and having my ostomy bag. I was very insecure and terrified. I went into the dressing room and tried on the jeans. Well, being small and having a small torso made it quite difficult. The sales associate kept pushing for me to come out and look at myself in the mirror to get a better angle. I politely declined but she kept pushing. Finally I stepped out with a pair on. I was wearing a long baggy shirt. She began to fit me around the waist and touched the top of the bag. She quickly said “What’s that?” I replied quietly, “It’s an ostomy!” She wanted to know why I had one and what it does. I explained hesitantly and I could have crumbled right on the spot. She said, “I would have chosen death over getting that nasty poo bag.” Talk about a “why me” moment. 

I stopped myself from crying because I knew this was a feeling I never wanted to forget. In my journey to this day it can’t get any lower than that. I tell those particular stories because each situation is a teachable moment. Now being older, I have found it is better to educate than to completely knock someone out because of their ignorance. When others say negative, cruel and damaging things to you, you have to flip the negative to a positive quickly. The faster you flip the negative to a positive, the better off you will be. 

To this very day, I can’t go a week with out someone saying something offensive. I will take the comment, and then politely walk away. To those who hate us, to those who judge us, to those who choose to bring you down — weed them out. Hold your head high because I stand with you, next to you and know I am proud of you! 

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 to me. It has seen me through the toughest of times. I am human and I do have those days when I wish I had my old body and I just stand in front of the mirror and cry the ugly cry. In those moments I know it is the disease talking and I choose not to own it. Not owning it is a huge coping mechanism for me. 

With a chronic illness such as Crohn’s disease, people can be harsh with words and some may even think you are faking your disease because they can’t see it. I have gotten thick-skinned throughout the years. Some say I lost my filter, especially when hurtful words come out of others’ mouths. I find when I get in an uncomfortable situation I need to really listen. Listening is key because if you walk in on a conversation about you, it is better to be calm and be ready to educate. I surround myself with good people and I believe you have to weed out bad ones, even if that means family.  

I am proud to have Crohn’s! I am proud to have an ostomy, aka my poui-Vuitton bag! It has taken my years to get to this point of accepting it. This is my body, this is my story… this is what I have but not who I am… and I am proud of it!

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.