Telling Your Friends About Your Ostomy

Kimberly Holiday Coleman is a colorectal cancer survivor and lives with a stoma. She believes that talking with your friends about your ostomy can not only help you feel more comfortable, but also make the relationships stronger.

Get Kimberly’s advice on how to talk about your stoma with your friends.

If all of my friends were assembled in one room and I could tell them one thing about life with an ostomy, what would it be? I’d say that even though I’ve gone through this intense journey as an ostomate, I’m still the same spontaneous, adventurous, silly, goofy, and fun-loving person that I was before my stoma surgery. 

As a matter of fact, my sense of humor actually has improved since going through all of this. After all, having a sense of humor can help get you through some downright “craptastic” moments of life. Moments like when you’re changing your pouch and poop comes flying out of your stoma and goes everywhere – including down your stomach, legs, and feet, and onto your pristine white bathroom rug. And you have no idea how to begin cleaning it up. These are the times when we can choose to laugh, cry, or both. I am in the latter group. Unfortunately, experiences like this can be top of mind when you’re making plans for dinner, group travel, and destination-based events. 

Telling people about your ostomy 

First, let's discuss whether we even need to share our ostomy life with anyone. The answer to that is no. We don’t need to share anything about our medical conditions – which, for us, includes having a stoma – with anyone. 

However, if you choose to share information, then the questions of when, how much, and why all come into play. In my case, I first talked about it with the friends who were closest to me. As time passed and I grew more comfortable with my ostomy (which I named “Toodles”), I discussed it with more friends and eventually decided to share my experiences on social media. 

Traveling with a stoma 

In June of 2017, 18 months after my ostomy surgery, I took a trip with my girlfriends to Jamaica. We were going to be sharing rooms with multiple people and there would only be one bathroom. As you can imagine, the anxiety bells were ringing loud for me. The thought of not only traveling internationally with a group but also managing my ostomy around them was beyond scary. I wondered if it could be done.  

Before accepting the trip, I discussed my feelings and anxiety with my roommates. The fact that they were my sorority sisters made the conversation easier. I expressed my concerns about changing my appliance, possible mishaps, smells, and any physical challenges that might occur. They all assured me they were good with it and off we all went to Jamaica. And it turned out to be a fantastic trip. I can’t express how comforted I felt when they would acknowledge “Toodles” when we were changing or at the beach. They even asked to see my stoma during a bag change and they never looked disgusted. They were just curious about it. I felt myself exhale and my shoulders dropped with relief knowing that I was accepted on that level. 

So, if you’re thinking about traveling with friends, I would suggest talking to them about your stoma as early as possible. This gives yourself and others a chance to sit with all of the information, and plan your daily agendas, and events. If it helps you to feel more comfortable, you can book your own room. I have done this based on the trip length, group size, and bathroom accommodations. 

Keeping the lines of communication open 

Creating a safe space with your friends can be a proactive move on your part. If you choose to have the difficult conversations and tackle the anxiety-producing topics, your friends will be more comfortable speaking their truths with you. And when embarrassing and/or awkward moments happen with your stoma, your friends will know how to support you. They will be able to cry and maybe laugh WITH you during and after the challenges. They also can cheer you on for the big and small wins we have as ostomates getting back into the world after ostomy surgery. 

When you’re navigating trips, dinners, and large events with friends, I repeat: discuss, discuss, and discuss. In my experience, it helps to ask questions in advance. Those questions tend to be centered around bathroom, elevator, and cane/wheelchair access. This helps my friends to be more conscious when planning group activities. Gathering information in advance has helped our trips go much smoother, and if emergencies arise, everyone feels more empowered to assist me if needed.  

In the end, remind your friends that you are still your same, funny, awesome, spontaneous self – and you now have the bonus of a stoma, which helps you do all of the things you want to do. These types of candid conversations can foster closer relationships, compassion, and a deeper understanding of each other. 

Kimberly received compensation from Hollister Incorporated for his contribution to this article. The testimonials, statements, and opinions presented are applicable to the people depicted. These testimonials are representative of their experience, but the exact results and experience will be unique and individual to each person. Please make sure to consult with your healthcare professional for further guidance and instruction. The information provided herein is not medical advice and is not intended to substitute for the advice of your personal physician or other healthcare provider.