Molly Atwater-Pulisic has used an ostomy since undergoing ileostomy surgery in 2017 at the age of 22. Since then, she’s shared her experiences and advocated for the ostomy community on her social media accounts and as a spokesperson. We talked to her about what she’s learned in her seven years since becoming an ostomate, and her best tips for others just starting out.
What are some preconceived notions people have about using an ostomy bag?
If you asked the average person what they thought about someone with an ostomy bag, you’d find most would conjure up an image of an elderly person who always smelled a little “funky;” wore big, baggy clothes to hide their bag; and had a completely sedentary lifestyle. Let me tell you, that couldn’t be further from the truth!
What are the biggest challenges of living with an ostomy?
The most common physical problems associated with ostomies are bag leaks, skin irritation, and hernias. Luckily, patients can get relief from these problems by talking with their medical team to find the right combination of products and accessories to make navigating these challenges easier.
Another important challenge that doesn’t get enough attention is the effect of ostomy surgery on mental health.
Do you have any advice for someone who has just started living with an ostomy?
Allow yourself to feel all of the feelings! Even if your surgery saved your life, you have every right to feel anger, sadness, and loneliness. It’s helpful to grieve the life you had before surgery, as well as the life you thought you would have in the future.
But equally as important is focusing on finding the glimmers of light in the darkness. Did your ostomy save your life? Stop the endless trips to the bathroom? Give you more time to enjoy those around you?
Shifting your attention to gratitude is hard, but it makes navigating your new normal a little bit easier. (Also, NEVER leave home without an extra set of supplies!)
What do you want other people to understand about individuals who have undergone a colostomy, urostomy, or ileostomy?
You’ve probably met us and had no idea that you were talking to an ostomate. Contrary to popular belief, we ostomates wear jeans and crop tops, run marathons, work full-time jobs, and live incredibly fulfilling lives. Our ostomy bags don’t slow us down — they give us a new lease on life. We’re also some of the most bodily fluid-positive people on the planet.
How did you find the most comfortable ostomy bag for you, and are there other types of products that are helpful when living with an ostomy?
Finding the right ostomy appliance is like trying to find the perfect pair of shoes. Even if your best friend has the same size foot as you, everyone’s body is a little bit different and their favorite pair of sneakers may leave your poor feet covered in blisters!
There are so many appliance options to choose from (one-piece vs. two-piece, flat wafer vs. convex wafer, transparent cover vs. opaque cover, etc.), that the possibilities can feel endless. Things to consider when picking an ostomy bag include skin sensitivity, stoma length/location, and lifestyle — and remember, the bag they give you in the hospital doesn’t have to be your forever solution!
Plenty of supply companies will send you product samples to find what works best for your body. My personal combination of supplies took a few months to find! I also encourage looking at non-medical accessories like underwear and/or belts that can both prevent bag-on-skin irritation, and also make your ostomy feel less medical.
