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Ostomy bag leaks

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.

The surprise

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.

The poonami

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.

It’s ok

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

Sam xx

Glastonbury toilets

I was at Glastonbury this year and for once, it was HOT!! The heat was tough but I drank plenty of (non alcoholic) fluids to stop the dreaded dehydration and having a few bag changes as the hot weather didn’t do my ostomy bag much good!

I unfortunately had a crap experience (!) with the toilets, and it was something I shared on my Facebook page, but realised I hadn’t talked about it over here.  I know that not all of you follow my social media and thought I would share it here.

“Tonight my bag suddenly filled fast, we walked away from the stone circle as we were waiting for the fireworks in search of a toilet FAST! You know those bag fills where it suddenly feels like it will pop off?!

We saw an accessible portaloo and a staff member said “this is for disabled people”. I said “yep I know thank you”

He asked if I was staying in ‘disabled camping’ and I said no. He said “you know these toilets aren’t for anyone other than disabled people right?” I said “yes I do, do you want me to tell you what my disability is?”

My husband said “you know that it’s not just wheelchair users don’t you?” My son pointed at the sign on the door that said “‘Not all disabilities are visible” 

glastonbury accessible toilets invisible disabilities

He said “lots of people might try and take advantage!” I said “do you want me to show you?!”

He eventually let me in and it was vile. Shit and piss everywhere, pitch black. I had to ask my husband to come in and hold a torch and I sorted my bag out.

We came out to him complaining to other staff members that people who weren’t in disabled camping shouldn’t be using the loos. I was mortified.

My husband went up and asked if there was a problem, he pointed out the sign and told them I had a disability and just because I wasn’t in a wheelchair didn’t mean I didn’t have extra needs. That we weren’t in disabled camping as he is staff so were in a staff campsite. They said they have to protect the loos from people who just want to use them.

Eventually another staff member said “do you have a colostomy bag?” I said yes ( then wasn’t the time to split hairs!) and he explained that I could speak to someone and get a wristband and also gave me the door code.

I’ve had to speak to a group of 6 people then another 2 to get use a toilet tonight. It’s embarrassing and humiliating. If I’d gone up in a chair and not had a wristband they would not have treated me like that.

And to have a guarded, locked toilet that was so disgusting is ridiculous. Having a larger cubicle does not an accessible toilet make!!! 

glastonbury accessible toilets invisible disabilities

A wheelchair user would have struggled massively to transfer themselves to that loo as it was filled to the brim with shit and the sides were covered in piss and shit. It was so dark in there that I couldn’t see a thing and needed someone to come and hold a torch!

I’ve done festivals for the past 20 years, I know what toilets are like, I’m no princess and totally get that they’re vile. But if you’re guarding and locking a loo and making such a fuss about protection of disabled people, perhaps make that toilet truly accessible. We can and should do MUCH better than this.”

 

I know that I really should have organised myself before, but I can’t help thinking that it really should only take some common sense.  I understand that people have a job to do, but going to an accessible toilet isn’t some kind of luxurious experience that people are going to lie about, surely?

There seems to be an obsession with the checking of disabled people and their toilet habits, so many questions to just go and have a shit and till you have stood with crap running down your legs waiting for another human to decide whether you should be allowed to go to the toilet, then it may be hard to understand just how humiliating, upsetting and degrading it is.

I will never stop shouting about this…

 

Sam xx

A day of firsts…

A day of firsts and not all good ones Im afraid.

The day started at 4am when I woke to find my bag had somewhat exploded…  Im thinking making it three weeks before having a full blown blast out is good though, yes? Poor old Timm was woken up and helped sort me out and get me in the shower whilst he did a full bed strip and got some washing on.  I know this is gross, but it’s life for someone with a stoma so I thought it was important to share.  Basically my bag was completely filled with air and so all output was forced out of the sides of the flange (best word ever)… Not a good start to the day.

Anyway this morning my lovely friend Caroline took me into Sheffield for a bit of shopping.  Its the first time I have been out without Timm in a month so it was a little nerve racking but lovely, we went to the Forum for brunch and it was just so nice to be out as a ‘normal’ person.  We chatted, shopped and were generally just a bit giddy.  Ive not had enough giddiness in my life for the past few weeks so it was fantastic to have some time with my friend.

We did have a bit of a laugh when I was explaining to Caroline about ‘phantom rectum’ which is where despite the fact that I have no colon and nothing is connected, I sometimes feel that I need a poo… This is known as a phantom rectum – As I was giggling about the funny name, her response was “Well it does have a ring to it!” Cue hilarity…

Then comes my next first.  I went to the loo and realised I had some leakage on my bag, so I came out and used the disabled loo and my radar key for the first time! I also had to do a clean up and put a new flange and bag on in a public toilet! A bit terrifying as so far Im used to taking my time and doing it in my bedroom.  But I managed it and was just really glad I had my full pack up of products with me.  It really made me realise the importance of being able to use the disabled toilets.  I need the space, but more importantly the use of the basin in the cubicle.  Also the importance of having a spare set of everything I need to do a change.

stoma products

I got a travel bag from Fittleworth who are my delivery company for all my ostomy supplies.  Its not the most fashionable thing in the world but it keeps everything together and was a lifesaver today.  The only thing is that its quite big and so I need a large handbag to fit it in.  I have a couple of larger bags but thought it was VERY IMPORTANT that I had another… Right?? I bought this beauty today from one of my favourite shops Within Reason by The Bombay Satchel Company.

bombay satchel company bag

 

Coming home from our few hours out, I could barely keep my eyes open.  I can’t believe how exhausted I feel after doing so little.  Its a reminder that my body is still mending and healing and though I have more energy now, I really need to make sure I don’t push myself too hard.

So Im off for a nap now to recover from a hard day drinking tea, eating and shopping!!

Love Sam xx