There is so much that goes into having an ostomy. You have to get used to going to the bathroom a different way, you have to get through self-esteem issues because your body is now different, and you have to learn to become confident in your new “normal” life. It took time for me to adjust, but month-by-month I started feeling more comfortable in my own skin. Add in the overwhelming and terrifying realization that I had to tell my friends, family and sometimes even strangers I had an ostomy. Now I’m back to square one, this is uncomfortable.
In the past 11 years I've had 14 surgeries, including three ileostomies and one colostomy. People have said some very rude and unkind things to me, especially in the beginning. Here are a few examples of people saying and doing 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, 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 out shopping after ostomy surgery, so I was very insecure and terrified. I went into 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 one, so I explained hesitantly and then she said, “I would have chosen death over getting that nasty poo bag.” Talk about a ‘why me’ moment. I still have a hard time trying things on when I’m shopping because of that experience.
I’m sharing these stories because each situation is a teachable moment.
Now being older, I have found it is better to educate than to overreact because of their ignorance. When people are ignorant and inconsiderate, I have to flip the negative to a positive. Changing my perspective is one of the most powerful lessons I've learned in life. And the faster I flip the negative to a positive, the better off I will be.
Now when I hear someone saying something offensive about my ostomy, I take in the comment, and then 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 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 back, when 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.
When I find myself in uncomfortable situations, I need to 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.
I believe there is a reason why I am here and living this special journey.
I am proud of my journey through Crohn’s! I am proud to have an ostomy, aka my Poui-Vuitton bag! It has taken many 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!
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