It is quite literally shit when your ostomy bag leaks. You are going about your day when all of a sudden you realise that the bag has failed and you have poop dripping down your tummy. Today’s blog is about the dreaded ostomy bag leak.
For anyone who doesn’t know, ostomy bags are bags that stick to the abdomen, they go around a stoma which is a man made hole into your body. Mine is an ileostomy which means a small part of my small intestine comes through my stomach and the bag sticks around it and catches my poo. There is no control over when the poo comes out. Most of the time the bags work well, but occasionally they will fail in some way or another and can leak. I thought I would talk through some of the leaks I have had.
Types of ostomy bag leaks
There are a few different types of leaks in my experience. Do let me know in the comments your leak stories!
The itchy one that you catch before it comes out
I have very little feeling in the nerves on my skin of my tummy due to all the surgeries. But sometimes I get this burning itch that tells me that poop has lifted the sticky flange on my tummy and it is coming to get me. Usually I can see the flange darken underneath and it gives me enough time to run and do a bag change.
This is one that comes with zero warning. One minute you are totally fine, the next you wonder why your leg feels wet and you realise you are covered in crap!
The morning bag of farts
I have no butt hole. I can’t fart. But my body still produces gas and that gas comes out of my belly through my stoma and into my bag. Overnight, this gas builds up and the bag swells. Imagine a bag of crisps on an airplane flight and you get my drift. Sometimes the bag can fill up so much that the pressure pulls the sticky flange away from the skin. And the poop doth flow.
The have I or haven’t I?
Sometimes I get the feeling, the itchy, burning feeling that my bag is starting to leak. But then I look and see no signs. It is the have I or haven’t I? You can’t risk it and so do a full bag change, often to find your mind has been playing tricks on you and there is no leak at all.
As the name suggests it is a tsunami of poo. You have no idea where it started or how but you look down and the shit is everywhere! It’s in your pants, on your legs, in your bellybutton. It is a horror show. There is no other option than mega shower and probably a little weepy cry.
The annoying gap
The ostomy bags these days are brilliant. But sometimes they just don’t want to stick. Maybe your skin is sore, maybe it’s a bit damp, maybe the gods of stomas are mocking you? Who knows? But it is annoying, you do a bag change and think all is well but the sides are just not sticking. And that poop can find the tiniest crack to sneak out of.
The OMG I didn’t do up the bottom!
I have only done this once. And full disclosure; I was drunk. I had been to empty my bag and just plain forgotten to do back up the velcro bottom afterwards. And you can imagine the result. I also once started to have a leak whilst out on a night out. I was already a bit squiffy and went to the loo to change my bag and accidentally stuck it on upside down so the spout was pointing upwards. Not ideal. And this is why I rarely get drunk any more!!
The stuck in a vicious circle
The poop that comes out of my bag is very acidic and bad for your skin. When it leaks onto the skin, it irritates and burns. This can create big sores on the skin. These sores make the skin like an open wound and are damp. Here’s the kicker, ostomy bags don’t stick to sore, damp skin very well. So it is easy to get stuck in this vicious circle of leaking, getting sore skin and then leaking more because the bags don’t stick to sore skin. And round and round and round you go. It is shit.
The are you freaking kidding me
There are times when the leaks have just been constant. The worst time for me was at Glastonbury and a mixture of heat, sweat, vegan food, booze and who knows what. I went through 16 bags in two days. It was hell…
What can you do?
Though I have named a lot of leaks here, really it is important to know that you shouldn’t be facing leaks all the time. If you are, then you need to speak to a professional, usually a stoma nurse or ostomy company who can help. It is important to figure out WHY you are leaking.
It could be that you need to try and different bag or system. It could be that you have a hernia and it has changed the shape of your tummy. Maybe you have sore skin and that needs to be resolved. You shouldn’t be leaking so much that it is effecting your day to day life, so please don’t just put up with it. Speak to someone and ask for support.
There are so many different products on the market to help. It is important you know this. You have so many different options, have a google and remember you can get free trials of products. But do speak to your stoma nurse about what could be good for you.
I know I am making light of it here, but truly I do understand how utterly soul destroying it can be when you have a bag leak. I have felt embarrassed, humiliated, angry, frustrated, devastated. I have cried, Ive locked myself away, I have vowed to not go out again. I have felt dirty and smelly and wondered how anyone could want to be near me. I get it.
But unfortunately it is a part of my life now. And I refuse to let the occasional bag leak ruin my life. I don’t want a bit of poo to stop me living my best life, to stop me from doing the things I want to do. So I laugh about it, I make a joke, I deal with it and put it behind me. I try to make myself more resilient for the next time it happens.
It’s ok. If you have a bag, you will have faced bigger, badder and darker things in your life than a bit of poo. It is ok and you are ok. You clean that shit up, sort yourself out and carry on being your badass self.
Peace and love