Learning you need a colostomy, whether temporary or permanent, can be nearly as devastating for some patients as hearing the words, “you have cancer.” As you start processing the reality that your life will be dramatically different in some ways, you worry about leaks and smells and whether your life will be anywhere near the “normal” life you’ve been living.
I empathize with those and any concerns people have about their colostomy, but I promise you don’t have to live in fear. And remember, the bag is saving your life.
My colostomy was supposed to be temporary, but a long and complicated surgery to remove a three-inch adenocarcinoma from the wall of my rectum ended with a different result. The tumor was larger than expected and radiation to treat my Stage-3B cancer left a lot of scar tissue, so there wasn’t any rectum to salvage. My surgeon was forced to remove the whole thing.
I was disappointed at first, and then devastated when my first appliance leaked in the middle of the night while I was in the hospital. Stinky wetness is not exactly something anyone wants to wake up experiencing, but I learned soon that I was given the wrong appliance for my body type.
I was lucky. My hospital has two fabulous Cleveland Clinic-trained ostomy nurses on staff. Over the course of three visits they trained me how to properly change out and attach my appliance. They also implored me not to let my colostomy alter my active lifestyle. They knew I was a runner, and I liked to bike, hike and swim.
“You can continue to do all of those things,” Annie said. “These appliances are engineered to let you live as normal and active a life as you want.”
In the years since my surgery, I have helped friends who were not as fortunate to have ostomy nurses understand the workings of their stomas and appliances. My friend Belinda, who died from ovarian cancer, asked me to come to her hospital room. She was getting a colostomy because of a bowel blockage and wanted to see what mine looked like. I had absolutely no qualms showing her.
I’m very open about having a colostomy, and I’ve offered lots of advice to friends who have had to get colostomies for various reasons during their cancer experiences. If you are getting a colostomy, or know one is in your future, here is my advice:
- Process Your Emotions. It’s absolutely okay to feel angry and devastated. Even a temporary colostomy means your body has changed. You’ve just entered a world of uncertainty and worry that will last until you become accustomed to being what’s known as an ostomate.
- Don’t Sit on the Sidelines. I know stories of too many people who won’t leave their homes, or even their couches, because they fear what might happen with their colostomy bag. It’s tempting, but don’t do it. You have a lot of living to do. Go out and live.
- Be Prepared. I carry what I kindly refer to as my “shit kit” with me almost everywhere I go. If it’s not in my hands or in my backpack, it’s accessible in the car just in case a leak happens or I need to change out the pouch (I use a two-piece disposable pouch system because a drainable pouch simply isn’t feasible for a line-backer built guy who travels frequently). My kit contains flanges, rings, barrier strips, pouches, baby wipes, ostomy scissors and a roll of dog doo bags, which are perfect for disposing of used pouches.
- Laugh at Leaks. Let me be honest with you, leaks are inevitable. I don’t know a colostomate who doesn’t have a leak story or three to tell. You will get over even the most catastrophic public leak situation. Share them. It takes the sting out of what might otherwise be a humiliating experience. My first significant leak occurred 10 minutes before I was slated to share my cancer experience at an event. While I did not expect to find myself standing stark naked in a public restroom hosing myself off, it is one of my favorite leak stories to tell.
- Change Your Appliance. This is important. If your pouching system has an odor or leaks frequently, get a different system. My first system had a flange that attached to my body using a large adhesive bandage. I sweat profusely when I work out. Sweat got under the bandage, loosening the flange. Well, you can see where I’m going with this. I now use a system that is more of a rubberized plastic material that stays in place for days. I’ve run a marathon and two obstacle course races with this system and had no leakage issues whatsoever. I also like to swim laps at the Y, and I can absolutely do that without fear using this system.
- Enjoy the Perks. Okay, I know you’re wondering what perks there could possibly be to have a colostomy. My favorite is that I’ve cut time out of my morning routine. I’m not a toilet sitter anymore, which can be quite convenient. Some of my runner friends are jealous of my situation because while they have to stand in line to evacuate their bowels in a porta-potty before a race, I don’t have to do that.
- Bare Your Colostomy. If you spend much time on social media look up some of the colorectal cancer survivor group pages. You are bound to find pictures of men and women who proudly let their bodies and colostomy bag hang out for all the world to see. Honestly, I’m not there yet. Not because I’m afraid, but because I’m fat. The picture that accompanies this post is as close as I’ve come to “baring it all.” When I get to my goal weight, the first picture I want to shoot is one of me showing off my colostomy. It’s part of who I am. I cannot deny it and I’m not ashamed of it. You shouldn’t be either.
This post originally appeared at whatnext.com as part of their “What It’s Like” series for cancer patients.