The first few years after my stage II colorectal cancer diagnosis were pretty rough. I was in and out of the hospital with infections, chained to the toilet by bowel issues and crippled by social anxiety. This is not how I envisioned my life going at age 32.
I was one of those people who really, REALLY did not want a permanent ostomy. I resisted the idea of getting one for a long time because, in my mind, there was still such a negative stigma attached to it. After multiple surgeries, hospital stays and sepsis infections, though, I finally gave in and let my doctors create a permanent ileostomy for me in 2016.
I was surprised by how dramatically my life changed for the better once I had an ostomy. It took some time to accept my body’s changes and the new way it functioned. But once I did, it opened my eyes to all the things I could do that I hadn’t been able to do before. I finally started to live again.
Here are seven unexpected benefits of having an ostomy.
1. I’ll never hold up the bathroom line again.
Before my ostomy, I always used to have to sit in the aisle seat on an airplane, so I could get to the restroom quickly. I was also very aware of the beverage cart’s location and got stressed and worried whenever it blocked my path. Colorectal cancer is more than a physical disease; it impacted me mentally, too. My anxiety was high all the time. Now, I can sit by the window, admire the view and just relax and enjoy the flight.
I also never have to worry about being caught short when I’m out with my friends. I can eat, drink and laugh at the movies, ballet, symphony or on road trips — and not have to wonder where the restroom is (unless I have to pee!). Because ostomy bags are always “on,” I could be sitting just about anywhere “going to the bathroom,” and no one would be the wiser.
That also means I’m one of the quickest people in and out of the bathroom. It only takes me a minute to empty my pouch. I don’t even have to sit on the toilet seat!
2. Goodbye, hours spent on the toilet.
My stool is collected in a bag outside my abdomen, without any conscious effort on my part. So, I no longer spend hours on the toilet because I’m constipated or have diarrhea.
I did have to figure out my diet early on and adjust what I ate to normalize my output. But even when that’s looser than I’d like it to be, I still don’t feel any sense of urgency. I just empty my pouch more frequently, increase my fiber intake and use an over-the-counter anti-diarrheal medication until things settle down.
3. Gas is no longer an issue.
The first few months after my ostomy surgery, I noticed it would sometimes make little random noises. I had no control over when and where this happened. Because of my ostomy’s location, though, it was easy to pass it off as my stomach growling because I was hungry.
Now, it hardly ever makes a sound. It also has a filter to release gas odorlessly. So, I don’t have to worry about making excuses or embarrassing myself. And, since I don’t pass gas in the usual way, I can’t be blamed for a smelly room either. You’ll just have to admit it was you — or blame the dog.
4. Outdoor adventures, ostomy style
I recently took my dream trip to South Africa with a dozen women from all over the United States. Together, we explored Cape Town and the Winelands district, went on safari in the Gondwana Game Reserve and climbed Table Mountain. I saw penguins and zebras just feet away from me in the wild. It was my dream trip that finally became a reality.
I never would’ve felt comfortable doing any of that without my ostomy. When you’re high up in the mountains or way out on the savannah, you have to make do with what you have and “pop a squat” if you need to go to the bathroom. Like most people, my fellow travelers had to pull down their pants and underwear and risk getting bitten by insects and inadvertently exposing themselves while they did their business. I just inched my waistband aside and emptied my pouch.
5. My childhood dream of looking like a doll became a reality
Growing up, I played with dolls a lot and always wanted to look like one in particular. Little did I know that once I was an adult, I actually would resemble her, at least in one way.
My entire large intestine, rectum, and anus had to be removed to treat my colorectal cancer, so the place where my anus used to be is now sewn up. I have what is known as a “Barbie butt” in the ostomy community.
6. There is a whole community of ‘ostomates’ out there
I was very hesitant to tell the first guy I dated seriously after the ostomy that I had one. But I finally did when I knew things were going to get physical. It turned out that my boyfriend’s grandfather had had one, too, so he knew exactly what it was and wasn’t bothered by it at all. I had no idea how common ostomies were.
I was also astonished to discover how supportive strangers could be. To help break the stigma of ostomies, I finally built up the courage to post a picture and video of myself on social media with my ostomy pouch showing. The feedback was amazingly positive. Millions of people viewed the video, and hundreds of thousands commented. Many were fellow “ostomates” or knew someone who was.
Having an ostomy is not glamorous. But sharing it so openly was liberating. It made me realize that there’s a whole community of people out there like me, and many have become friends who “get it.”
7. I have a new excuse to accessorize!
It’s sort of a tradition in the ostomy community to give your ostomy a name, since it’s your constant companion and will never leave you.
When I went on a surfing trip with a group of cancer survivors, they helped me accept my ostomy and name it “Fill,” after I described its function. Right now, he’s got a pouch cover on that says, “√ UR :” (check your colon). It’s my way of building awareness around colorectal cancer prevention.
The pouches themselves are usually pretty plain – either white or tan. But you can dress them up any way you want – by hiding them under bright, colorful covers as I do, decorating them with glue and sequins, or even painting them with your own designs. I see mine now as another excuse to accessorize!
Making peace with my ostomy
I’ll be the first to admit that it’s not easy to come to terms with having an ostomy. Accidents can happen, especially in the beginning, when you’re still figuring out what works for you. But with the help and support of your care team, ostomy nurses, ostomy supply companies and other ostomates, you can deal with the challenges just like I did – one day at a time.
The truth is, if ostomies didn’t exist, I wouldn’t even be alive today, much less enjoying a life full of adventures. So, I am incredibly grateful for mine. It’s given me a sense of freedom I never expected to have.