A couple weeks into healing from my colectomy (which resulted in an ileostomy), I had built up enough strength to walk for 30 minutes to an hour. A friend of mine that lived nearby invited me to walk with her in the mornings. It was great for her because she planned to walk anyway and it was more fun with a friend, and it was great for me because it gave me a reason to get up in the mornings, gave me some social interaction, and got me outside and moving. She would arrive at my house around 8am with her stroller and we would walk around the neighborhood on the same loop pretty much every day. I was diligent about bringing my ostomy emergency kit with me on our walks, placing it in the bottom section of her stroller so I wouldn’t have to carry it.

My ostomy emergency kit was complete with every item I used during a normal pouch change and probably a couple extra things as well. I’ve since slimmed my kit down quite a bit and carry the bare minimum in it (one pouch change of supplies and scissors, that’s it). But at the time, I was really anxious about getting a leak and I wanted to be 100% prepared for it if it happened. What I hadn’t really thought through, was how bringing my emergency kit on a walk around my neighborhood would have helped.

Realistically, if I had gotten a leak on one of those neighborhood walks, I would have gone back to my house as quickly as possible, because the alternative would have meant changing my pouch on someone’s lawn or knocking on a stranger’s door asking if I could use their bathroom to change my pouch and I’m pretty sure I would have been too emotional and stubborn to do that. I’m sure I would have found myself feeling really overwhelmed and embarrassed as I made my way back to my house, but once I was there, I’d be in a more familiar place and have access to my normal pouch change set up (at the time I was using the Grab & Go method for storing my supplies).

Leaks still freak me out. When they happen at home, I’ve found that I manage to stay pretty calm and collected as I clean up my mess. However, when I sprung a small leak at work (no outwardly visible mess), instead of using the emergency kit that I kept with me there, I went all the way home to deal with it. To say I handled it gracefully would be lying, I was crying like nobody was watching as I sat in traffic on my way home.

Once I got home, I looked into the mirror and saw my tear-streaked face. I talked myself down a little bit, reminding myself to take some deep breaths and told myself everything was okay. I was going to finish this pouch change would still make it to my evening class on time. I began to calm down but the adrenaline stayed with me for the rest of the evening.

After nearly five years with an ostomy, I have noticed that I don’t bring my emergency kit with me very often anymore. As I reflect, I think there are a couple reasons for this:

1. I’ve become a little bit complacent and lazy about bringing it. I have been fortunate to have had mostly reliable experiences with my ostomy appliance, so having my emergency kit nearby has kind of fallen out of my awareness.
2. I’ve noticed that I haven’t used it on any of the occasions where it would have been fitting, and have instead been fortunate to have been able to go somewhere I felt comfortable, where my supplies conveniently already existed.
3. I’ve come to trust my instincts and my ostomy. At this point, I have a fairly good grasp of when my bag is filling and strive to empty it well before it’s full. I also try to stay keenly aware of when my pouch is starting to get loose and use that awareness to decide if I need to use the bathroom or change my bag earlier than originally planned. I am pretty cognizant of making sure that my output doesn’t hang out around my stoma, weakening that seal and try to make sure there’s always a little bit of air in my bag to help make sure it flows downward.

I’m grateful to have found a relatively reliable ostomy pouching system for my body and that my ostomy behaves pretty well for the most part. I know this is not the case for everyone, and that not all leaks are equal. Some leaks make such a mess, you need an extra change of clothes to go with that pouch change and you might have to complete your pouch change on the spot. I

If you struggle with leaks, I encourage you to work with a WOCN to keep searching for a system that allows you to trust your body again. You know your system better than anyone else, so trust your gut. If you’ve just gotten your ostomy, you might want to bring your emergency kit more frequently as you start to learn your rhythm.

If you find yourself with frequent or unpredictable leaks, you should probably bring your emergency kit with you more often than I do. Ultimately, we should all bring a change of clothes and our emergency kits with us whenever we’re going somewhere far enough from comfort that we wouldn’t be able to make it back if we got a leak. Regardless of how often you bring your emergency kit with you, remember that exposure to too much heat or cold can affect the reliability of your supplies so it’s good practice to swap them out from your ostomy emergency kit periodically.

What’s in your ostomy emergency kit? Do you carry it with you everywhere you go?