This is an uncomfortable topic for me. It’s personal. I struggle with embarrassment over it. And STRUGGLE is the key word. I am not embarrassed, but I do struggle with it.
The longing to belong and be known is one I am very familiar with. I want to be completely me-silly, goofy, crazy, crafty, fierce- in every circumstance I want to be me and be loved completely for it. But it doesn’t usually happen that way. I shy away. I feel ashamed. I feel guarded. I feel like I am wrong, like I was made wrong. I don’t feel enough.
Ashamed, embarrassed, shy, reserved, guarded. It’s what we feel when there’s something about us that seems different than others. We have to hide what’s different, protect that inner soft seed of hope and creativity. As if what makes us different, and unique, is shameful. It’s this balancing game of fit in but stand out. Hiding carries shame with it, secrets that wear down your mind and your body.
There’s a need to be open, honest, transparent, integrated. Integrity is when the inside and the outside match. To build intimacy with others, we have to be integrated with ourselves and others. Having integrity is risky business. But it’s the only way to really connect and thrive.
You risk loss. You risk reputation. You risk friendships. Who knew that fitting in meant losing so much of who you are?
I have been sick with Crohn’s/Colitis for exactly 10 years. It’s been a hard battle. Experimental treatments and blood infusions and week long hospital stays became the norm. Infections, injections, food restrictions, and physical limitations became the norm. It interrupted my life. No more sports. No more pizza. No more late nights. No No No. Crohn’s ruled my life. I have so many stories connected to my Crohn’s struggle. Hard and frustrating stories and seriously funny, everyday stories. Life with Crohn’s makes things a bit more chaotic and a bit more colorful.
Recently my roommate brought home a delicious treat… one of my favorite: whoopie pie. I savored every bite. A few hours later when I went to the restroom, I thought I had pooped blood. I nearly passed out: a toilet full of red. Blood doesn’t make me queasy but a full toilet of it makes me panic. You see, I used to fill a toilet like that with blood. I nearly died then. Crohn’s makes you hemorrhage and bleed. I bled every day, nearly every hour, for years. I hardly knew what it felt like to have energy. Somedays it was hard to breath because my blood count was so low.
In that moment, panic shot through my body and I cringed at the thought of calling an ambulance, of the disease making it’s terrible home through my digestive system again. I cringed at the thought of being forced back into that life of cyclical inpatient stays and medications that make you puffy, gain weight, acne, weaken your teeth and bones, sleepy, and lose hair. All of this raced through my head in those very few minutes of panic. Being sick took a lot out of me. Crohn’s took a lot from me.
It wasn’t blood in the toilet. It was red food coloring from the whoopie pie. I couldn’t wait until my roommate came home to debrief about this incident. I just wanted someone to talk about it with. As we laughed, we agreed to not buy foods with red dye in them again. You see, she is one of two people who appreciate my “potty/poop” stories. “Potty/poop” stories are a huge part of my life. Three years ago I had a total colectomy (they took out all of my large intestine and part of my small) and gave me a colostomy/stoma (they take out the really infected intestines and loop whats left of your intestines and pull a bit of it through your abdomen and skin. About an inch or two of the intestine is exposed to the outside world and a “bag” is secured to the skin to catch the poop).
It changed my life. I started to have stamina again. I could walk, run, swim. I didn’t need blood transfusions 2-3 times a year anymore. No more hospital stays. No more seeing those same ER nurses. No more apple juice and rice and tomato soup. I got to have REAL food: steak and cucumbers and salad and fruit. I could semi-regulate my own body temperature. No more infections. No more missing out on life!
Surgery gave me life again. I thought about why I felt the need to wait until my roommate came home to discuss the “blood” incident; why she was one of only two people that felt safe to discuss this with, why I shared my story softly with her so no one else would hear. Why couldn’t I just share this with any friend or even use a normal voice? Why is “potty” talk so taboo? Why do I feel the need to hide this huge piece of my life? A lot of my life has revolved around poop. So what if it comes out into a bag.
When I first had surgery, I was so elated to be in a new season of life that I texted a picture of my stoma (the intestine that sticks out your abdomen and is sutured to your skin) to many of my friends. I thought it was so cool! This was a beautiful reminder that I was still alive.
My roommate mentioned some pictures that circled the internet over the summer about women who went to the beach in bikinis with their colostomy (bag) showing. That is BOLD. I was shocked and encouraged. I have never heard ANYONE talk about their bag publicly, let alone be willing to let the world see in pictures and displayed for other beach goers. Bold. Brave. Courageous! A friend of mine would call that a “wear your underwear over your pants kind of day”. Just be who you are. Integrated. Whole. Real. Human.
It takes courage to be that brave. I am so leery about discussing my bag. I laugh, inwardly. I take care of all my poop “incidents” quietly (there are MANY incidents). But it’s an everyday part of my life, a funny, sometimes awkward, and slightly inconvenient large part of my life; a part I have always wanted to share but have felt too embarrassed to. Something changed after I left the hospital those few days after surgery. This very thing that gave me life, this very thing that made me unique and beautiful and different and ALIVE that I sent PICTURES via text to friends, this very thing attracted some sort of stigma that caused me to feel ashamed and embarrassed and less than. I had to hide what saved my life. I had to find a way to be “normal”.
I’ve heard a lot of comments about my surgery[3 years ago], even this past week: “Don’t you want to have another surgery to reverse it?” “Well, you’ll have to get it [the stoma/colostomy bag] taken care of before you get married.” “You’re only okay with it because you don’t have a husband.” And the best, “Don’t you want to feel normal?”
Sometimes I hear others say “I could never do what you did. I couldn’t live like that.” Sometimes people get grossed or creeped out by me, when they know I have a bag. Yes friends, I have heard many comments about my colostomy bag, none of them pleasant or beautiful. Not one has seen it for the life that it’s revived in me. It hurts not to be heard. My colectomy, my bag is God’s unique blessing in a world drenched in sickness. God has used it to redeem my physical body!
The truth is, if we haven’t talked about my colostomy or a poop/bag story, it’s likely the real me hasn’t felt safe enough to come out. I promise you there will be some VERY laughable moments. It’s okay to ask questions, even the ones above. I’m pretty gracious with bag comments, but please see that it’s not gross. I’m not gross. I’ve been given a gift.
I like to talk about it, but not as if it’s bad. You see, this colostomy bag, this little pink intestine that sticks our of my abdomen, is the reminder of what saved my life! It’s beautiful to me. Wouldn’t you want to talk about the thing that saved your life?
It bears the mark of what’s brought me life and health again. Without it, I’d likely be dead. I don’t wish it gone. I don’t feel like a martyr or like I am missing out on life because of it. I also don’t think it’s something I need to change in order to get married. My husband won’t feel ashamed or embarrassed of me because of it. My colostomy bag is normal. Poop stories are normal to me. They aren’t “potty” talk. They aren’t wrong. It’s not something to be ashamed of. Maybe my stories will even color your day a bit. Maybe it’s time I step a little further out and wear my underwear over my pants when it comes to discussing my colostomy. I wasn’t made wrong. I am different. I am blessed. I am enough.
And just a note: I have laid aside my love for red velvet. If you feel so inclined to bake for me, I love homemade cream cheese frosting on ANY cake or cookie like substance that doesn’t have red food coloring in it.