Contributed by guest blogger Sunny Copeland
Whether your stoma was planned or unexpected, waking up from surgery with a changed body can be challenging. Adjusting to this new reality involves more than just physical changes; it means learning to love your altered self. Your clothes may fit differently, and outfits might press uncomfortably on your ostomy bag. Alongside these adjustments, you have new responsibilities: emptying the bag, changing it, and ordering supplies. Dealing with leaks while your incisions heal and coping with increased output as your digestive system adapts can be overwhelming. It’s natural to feel gratitude for the life-saving surgery while mourning the life you had before.
While the ostomy has provided a good majority of ostomates health and freedom, it can also cause us grief. I have grieved my previous body, I have grieved the loss of my career, and I have grieved the loss of my health before I got diagnosed with IBD. At the beginning of my recovery, I was fortunate enough to make connections in the Ostomy community online. I was also able to find a local group near me that met in person. Having support from loved ones is very beneficial. However, when you can get support from another ostomate it is so fulfilling. An ostomate knows your pain and has been exactly where you are. Even though I advocated to receive my surgery, I struggled with my mental health post-op. There were many days where the output just didn’t end. I was up multiple times throughout the night and day to empty my bag. I was able to reach out to my new friends in the ostomy community for guidance. Our community is so welcoming and ready to help each other. So many people were able to walk me through the first few months of their recovery. They validated my every fear and experience. They also made sure to give me hope for brighter and healthier days ahead.
The amount of tips, tricks, and product recommendations that other people in the community have to offer is so necessary in the first few months post-op. I struggled with leaks and sore skin for the first month of recovery. I was thankfully able to make some friends from an ostomy facebook group and ask them for advice. My friend Alan recommended I use paste instead of rings as a seal around my stoma. He didn’t live far from me, and he visited me in the hospital with a new bag system and paste to try. He taught me how to apply the paste to my wafer to help prevent leaks. After he introduced me to the new products, I was leak free for an entire year. I have been able to learn tricks for sore skin as well. An ostomate taught me to use nasal spray on my irritated peristomal skin. I have experienced great results from that advice, and my skin has never looked better. My friend Ashley even helped me resolve an issue with leaking from the spout of my bag by advising me to reduce the amount of lubricating deodorant drops I used. Alan and Ashley both carried me through the first few months of recovery. My ostomy journey has been much smoother because of their support.
Learning to love your bag and accept it as a part of you can be difficult. I find that the bags we wear are dull and lack personality. I am a firm believer that medical devices should reflect our style. Discovering SpoonieThreads was a game-changer for me. As a fan of crop tops, I loved being able to coordinate my bag cover with my outfits. SpoonieThreads bag covers gave me confidence and made my ostomy bag feel less foreign. I know a good amount of us find it to be empowering to put our bags on display. Being able to see other ostomates in bikinis, or shirtless at the beach has been so comforting and inspiring. I love that we are able to experience a life outside of the bathroom. However, I have many friends that feel more secure and confident with their bags concealed. Having your bag out isn’t for every ostomate, and that’s valid. When you look up information online about an ostomy bag, the results can lead you to believe that it is an end of life diagnosis, and that the quality of life is lackluster. This stigma could not be further from the truth. It is so inspiring to see all of the different lives that ostomates can lead. I have friends who weightlift, travel across the globe, and friends that thrive in their line of work.
Our ostomy bags are a part of us. We can celebrate them out loud, or we can choose to keep them private. Either way, we all have come to appreciate them. No sugarcoating: some days are harder than others; we experience sore skin, bag leaks, and an array of other complications. It’s not the end of the world, though. With our knowledgeable and supportive community to comfort us and guide us through every hurdle, we can overcome any challenge that comes our way. This community demonstrates that not only can you live a good life with an ostomy, but you can also truly thrive.
In memory of my friend Ashley Latora, who we lost on January 18, 2024. Even while battling stage four colorectal cancer, she was a beacon of support during my recovery. Her strength and kindness will always be remembered. ♥
Find Bag Out online support group here.
