By Lisa Trudel 

Luckily, I like the colour blue because I see a lot of it, one drop at a time. This comes from using the Hollister M9 Odor Eliminator Drops after emptying my ileostomy bag. I could not live without them! 

Luckily, I like the colour black. When I had a colon, I always wore black underwear. After my unexpected operation in January of 1996 due to ulcerative colitis, I was determined to continue wearing underwear because I could not stand the feeling of the pouch against my skin; I remain partial to black underwear. Fortunately, an ET nurse (enterostomal therapist) told me about a Canadian company called Weir Comfees and they sold underwear. After that business closed, I found The Ostomy Clothing Company and was able to buy my underwear from them. Since my surgery 30 years ago, I have always worn special underwear. In black. 

Luckily, I like the colour orange. Initially after surgery, I struggled with wiping the skin clean around my stoma when changing the appliance. Then I discovered Smith & Nephew’s REMOVE Universal Adhesive Remover Wipes. Part of the packaging is orange. I have used these little wipes since 1996. They are indispensable, even though they are not actually orange. 

Luckily, I like the colour red. Of course, my stoma is blood-red. However, red is also the colour of part of the packaging of Hollister #18202 bags/pouches and #11202 flanges/skin barriers. They have been part of me since my ileostomy surgery. Over the years, I have tried other brands but I always return to these products simply because I like them. 

Five and a half years after my surgery, when 9/11 changed the world, my corner of the world changed too. I used to buy just a couple of months of supplies at a time, but on September 11, 2001 when the Twin Towers in New York City crumbled, I realized that my favourite ostomy products were American-made. As I watched the TV news, I wondered: What would I do without my ostomy supplies? What if more areas of the USA were bombed by terrorists and the borders closed? That very day I ordered a six-month supply of my ostomy essentials. I have continued with this practice ever since. 

In 2010, when the TV series The Walking Dead became popular, someone asked me: “What would you grab to take with you if there was a Zombie Apocalypse?” I replied, “My ostomy supplies. I wouldn’t get very far without them.” The response, along with a puzzled wide-eyed look of amazement, was the usual “What’s an ostomy? Is that a colostomy like old people have?”  

Living with the invisible disability of a permanent ileostomy means being prepared to answer questions as if you were a professional healthcare educator, even when you really just want to say “I poop non-stop out of my small intestine that peeks out of my stomach beside my belly button.” 

During the past 30 years I have witnessed many advancements for ostomates. One of the best has been the bright green and yellow Hidden Disabilities Sunflower Lanyard for travelling through airports. Before I found this brightly colored necklace, my ostomy would cause the airport security alarm to activate and I would be subjected to the dreaded frisking wand being rubbed over my body and I would be questioned as if I was smuggling drugs. Over time, I got so tired of being interrogated that I simply pulled down my pants and proudly showed the airport security staff my ostomy bag. Their faces would turn a deep blush-red with embarrassment, especially when I announced, with the vocal authority of a stern schoolteacher, that they should not sleep through diversity training anymore. With the Sunflower Lanyard around my neck, I can now breeze through security with no questions and no wand frisking. I wonder sometimes if it was created just for me. 

Thirty years of living with an ileostomy has not only been about colourful manufactured products. I have found several do-it-yourself ways to manage, especially when I am not at home. For example, I always carry a small portable door hook in my tote bag or purse. Many public washrooms are not only unsanitary but often have no hooks on the cubicle doors. I prefer to hang my bag of ostomy supplies whether I am making an emergency appliance change or emptying my pouch. In addition to necessities including Coloplast Brava Strip Paste and Hollister Adapt Stoma Powder, I carry a squeeze bottle and a tiny one-ounce bottle of my favourite blue odor drops because I am an unapologetic “bag rinser.” 

My tote bag also contains a few post-it notes. In the mid-2000s, sensor-activated automatic flush toilets became common to sanitize public washrooms. These might be fine for people with a colon, but as an ostomate, I prefer to block the motion sensor in order to empty my bag without premature flushing. Placing a post-it note over the sensor usually does the trick. 

Thirty years have gone by with blue drops, black underwear and orange-not-orange remover wipes. What I once feared would define me — the bag, the stoma, and the invisible weight of it all — instead has taught me something I never expected. That survival can be colourful. That your body, re-routed and re-invented, can give you exactly what you need. 

Luckily, I like colour. It turns out, colour likes me back. 

This story was sourced by Lisa Gausman, Ostomy Canada Senior Editor.

Disclaimer: The information shared by Ostomy Canada Society is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Every person’s ostomy experience is unique. Please consult your health care provider with any questions about your condition, care, or treatment plan.