While at work the other day, I began to feel my skin itching and burning. I knew the sensation all too well and was afraid of what I would see when I went to restroom. Reluctantly, I stepped out to run to the restroom. Sure enough, I could see a leak creeping under the seal of my ostomy. I knew I did not have much time before the leak became more severe, ruining my clothes and burning my skin, so I sacificed my lunch break to run (literally) to my car to grab my extra supplies. After grabbing my supplies, I drove over to a nearby resturant where I was fortunate to find a private bathroom with a changing table (perfect for laying out supplies). Unfortunately, while private restrooms are nice for ostomates, they are often the only restroom in the resturant. Several minutes into my bag change, I began hearing angry knocks on the door. "Someone's in here!" I squeaked out. Several minutes later, I emerged from the restroom to a line of unhappy, judegemental faces. I felt a sense of embarrasement and shame wash over me as I made my way back to my car.
While an ostomy is often a life-saving option for many patients, it definitely is not all sunshine and rainbows. From leaks to skin irritation, sometimes having an ostomy can be really frustrating. In my two years with various different ostomies and now my permanent ostomy, I have had my fair share of frustrating moments. As much as I would like to say that I’ve handled all of these moments with grace and patience, that is definitely not always the case. I have, however, picked up some tips and tricks to get through the tough moments with my ostomy:
Try to remain calm. This is so challenging when you realize your bag is leaking or your skin is burning from irritation, but panicking only adds to the stress of the situation. I always force myself to take several deep breaths before tackling the problem at hand. By forcing myself to take a few seconds to breathe before immediately reacting, I have found that it makes my reactions less intense and I am able to handle the situation with a little more grace.
Be prepared. Being prepared for leaks, skin problems, and other problems that may arise with your ostomy can lessen your stress so much. It will not completely take away your frustration, but it makes managing the unfortunate situation a little easier. I carry an emergency ostomy kit with me everywhere I go just in case I need it.
Acknowledge your feelings. Leaks suck. Skin irritation sucks. It’s 100% OK to let yourself be frustrated at the moment. As someone with an ostomy, you are going to experience situations that many people will never experience. When something goes wrong with my ostomy, I always go to my mom and talk to her about it. I find that simply getting it off of my shoulders does wonders in helping me move on and enjoy the rest of my day.
Find humor in the situation if you can. Sometimes it isn’t possible to find humor in these situations, but I’ve found that when I am able to laugh at myself or the situation, I greatly lighten my mood. On one of my trips to Baltimore, I had an unexpected bag leak. There were hardly any places to stop, so my mom and I stopped at the first gas station we could find. It was a tiny, slightly sketchy place in the middle of nowhere and changing my bag in the tiny restroom was not easy. But after the fact, my mom and I laughed about the situation and how we were thankful it did not occur at an even worse time- like on the beltway.
Realize that a bad day does not equal a bad life. I am guilty of sometimes spirling into a pattern of negative thinking when I am going through a challenging moment with my ostomy. A bag leak at 2 AM leaves me frustrated, defeated, and full of resent and with that comes sadness and feelings of helplessness. In these moments, I force myself to take a step back and realize that this is only a bad moment, not a bad life. I am healthy, I am happy, and my ostomy has given me the ability to live like I never would have been able to before.
It is also so important to remember that each and every single person you pass on the street or in the store is facing something in their life that is causing them grief, frustration, or uncertainty. Have patience with others and have patience with yourself. I do not blame the angry people waiting outside of the restroom today for being impatient with me. After all, I look like a "normal," healthy twenty-something. But what I do hope is that at some point in their lives, those people come to understand that everyone is facing something and while someone may not look sick, they are battling things that are not visible to the eye.
No one said having an ostomy would be easy, but you can find ways to make dealing with those difficult moments a little easier. Know that you are never alone in your journey with your ostomy. There are hundreds of thousands of men, women, and children living with ostomies that can relate to the struggles that you are facing.
