“Leak” is a 4-letter word
I get it. Leaks are scary. They are perhaps the scariest part of having to get an ostomy for many people. And the worst part? Leaks happen.
If you have an ostomy for any real length of time, I don’t care how careful you are or how often you check and/or change your bag, sooner or later you are going to have to deal with a bag leak. But the good news is, it doesn’t have to be a big deal.
I got my first leak about a month after getting my ostomy. It was one of those where I could smell it a little and I was close to home and able to quickly change it. Since then, I go through long periods of no leaks at all and then suddenly I end up with a leak every day for 3 days straight. Then it’ll go back to a long period of no leaks. I can never find any real reason for it, but I’m aware that it’ll happen from time to time.
I’ve mentioned before that most of my leaks, at least bad leaks, happen at night when I’m sleeping. Other than that, I tend to get a pretty good heads up that one is coming. The area around the stoma will often start either itching or burning. However, even then, it’s hard to know how bad it is or how quickly you need to change the bag. I am not the type to rush and change it right away, especially if I just recently put on the bag. This is mostly because my skin gets irritated when putting on and taking off a bag too often, and it’s just my personal preference to wait and see for a little while if it’ll actually turn into a leak or if it’s just right there at the stoma. However, I must add that even if it doesn’t form into a full blown leak, leaving output around the stoma can still really irritate the skin. This is something that you’ll have to figure out what works best for you.
In my experience, there are 2 main types of leaks: those that start at the stoma and move out, and those that start at the edges and move in. Most often for me, it starts at the stoma. Now, this next part is going to depend a lot on your output. My output is very thick, so it can get under the wafer and start pushing through. I rarely deal with liquid output, so I don’t have much experience with those types of leaks. But with the thick output, you can often feel the wafer sort of pulling away from your skin. It’s at this point that I know I need to change the bag as soon as I am able to, but I don’t necessarily need to do it that instant. I usually can see the output underneath the wafer, but not at the edge just yet.
But sometimes you don’t get this heads up and you only realize you have a leak once it has made its way to the outside and it’s running down your stomach. Thankfully, with my thick output, this only rarely happens out in public, but this is what happens at night when I’m sleeping.
I do have some tricks that may help with this, like wearing some sort of wrap. I don’t do this on an every day basis, but there have been times that I have had a leak and the wrap kept it more confined. Also, keeping ostomy supplies with you can bring some peace of mind, but it is sometimes difficult to do this. I don’t prefer to carry them around in my purse (and of course that won’t work for the guys), but leaving them in the car can ruin the wafers if it gets too hot. You can keep some stashed away at work or a family member’s house that you visit often, but otherwise, I tend to only bring things with me if I know I won’t be able to run home easily. Another hack I have found is using a large square bandaid or medical-type tape to close up the leak area. You can keep something like this with you to help out in a pinch and give you more time to get to where your supplies are.
And then there will be times that the edges of the bag start pulling up and it’ll move in towards the stoma. These tend to be easier leaks to deal with because it usually takes time to pull up all the way towards the middle. But it has happened to me before where I wasn’t able to change before it got that far. This does usually only happen at the top of the bag, so it’s not actually leaking out. Patching it up with some tape or a bandaid usually gives me enough time to get it changed.
I do realize that leaks don’t always happen like this and there may be times that someone will have a much bigger leak and, unfortunately, a much bigger mess. This is where I again recommend having a stash of supplies (whether a new bag or something to patch it up) that you can use, at least to get you by until you can get home. And I don’t do this personally, but if it makes you feel more confident, keep an extra set of clothes in your car.
So the bottom line is this: Leaks are a part of living with an ostomy. But with a little preparation and keeping a level head, it doesn’t have to be something to live in fear of happening. Listen to your body, pay attention to how your stomach and surrounding area feels and you’ll learn when things don’t quite feel right. And of course, there will be times it may still sneak up on you, but that’s when not panicking becomes helpful.
How do you prepare for and avoid leaks? For those with more liquid output, how has your experience been different? Any tips for handling leaks when you’re not home?