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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

That time I met Dynamo and made him sign my ostomy bag…

This year, Timm, the kids and I headed off for a week at Glastonbury festival and had a whale of a time! We hadn’t been with the kids in 10 years and so it was lovely to revisit such an awesome place with our now teenagers, it was a lot less stressful than taking three under 7s!

We saw a lot of bands and had a very chilled out few days in the sun (yes! No rain!!), one afternoon we headed up to the Kids Field where the children still weren’t too old for a lot of silliness and painting and a lot of time sat in a big tent listening to them trying a ton of different instruments.  Then our youngest pointed over to a little tent that had been hosting a variety of children’s entertainers for the day, “Look!” he shouted “Dynamo is playing there!”

We looked at the small space that currently had a man making balloon animals and told him that it wouldn’t be the REAL Dynamo!! He insisted we went in and as we squeezed cross legged into the tiny tent we waited for a low budget version on Dynamo to grace the stage and low and behold, out steps the one and only real life Dynamo! Thom’s smug face screamed ‘I told you so!’

dynamo glastonbury kids field

So we watched a world class magician play to maybe 100 kids in this little corner of Glastonbury and were blown away.  Apparently he plays it every year and only kids are allowed at the front, he doesn’t do it for money but to instil a bit of magic into the lives of children.  How beautiful is that??

So afterwards, Thom points over and says, we can go meet him now! So we joined a little queue and waited, and out came Dynamo!  The kids met him and gave him a hug and got things signed and then pushed me forward – ‘tell him about your blog mum!!’ they shouted.

dynamo crohns disease ostomy bag

 

Dynamo has Crohns Disease and the way he has spoken about it has inspired so many people to not be quite so embarrassed of the condition and so I told him about the blog and just how wonderful he was for speaking out and then (and I know this is super weird!) I asked him to sign one of my ostomy bags!

 

And he did!

dynamo crohns disease ostomy bag

I never thought I would meet Dynamo, and I certainly didn’t expect him to sign my ostomy bag!!!

Sam xx

 

Convex Ostomy Bags – for the wonky, uneven, hernia’d or unique ostomy

Do you have an inny or and outie? That’s a normal belly button type question as we know that people are all different (I’m an inny just so you know, but with the amount of surgeries I have had, it is not the one that Mother Nature blessed me with!)

It’s odd as we totally get how unique and different we all are in every other part of our bodies, yet when we get a stoma, we assume that they should all look exactly the same and behave in the same way, when of course, they are all as unique to us as our bellybuttons are.

 

sam cleasby blogger ostomy ibd woman with a colostomy ileostomy bag

When I got my first parastomal hernia, I began to leak all the time.  My usual bags were just not fitting correctly, and I assumed that I must be doing something wrong.  It was only once I called my stoma nurse and not so bravely wailed down the phone to her, that I even heard of a convex bag.

Usual bags have a flat and soft flange that sticks itself around your stoma and to your stomach, a convex bag has a dome shape to the flange which pushes in around your stoma to make a better seal.  I originally turned to convex after my hernia, but there are a few other reasons you might want to try a convex bag.

After one of my surgeries, I ended up with a recessed stoma, it was kind of sunk in on one side and luckily I knew about the convex bags, so went straight to them.  If you have creases, dips or moats, or find yourself using a ton of paste or rings, you might really benefit from trying a convex bag.

I hear from far too many people saying they live with daily leaks or uncomfortable ostomy bags and it really saddens me.  We aren’t given that much information about the amount of choice we have in our bags, to be honest, I didn’t even know there was more than one brand when I first got mine as I just had what the hospital gave me.

We are super lucky to live in an online world where you can find out so much information, if you have an ostomy, even if you are happy with your current bag, then please go and do some research.  Take a look at ostomy brand websites and check out their full ranges, call them, email them, get samples and try them out.

convex ostomy bag

I tried the Aura Convex bags recently for exactly this reason, I want to keep up with all the latest technology and the newest bags that come out, so I am always sure of what is best for me.  I loved the super soft feel of these bags and the flange felt well stuck on helping with confidence.  Though it is convex, it sat really flat against my tummy meaning it was invisible even under a tight dress, the fit was nice and I had no leaks or issues whilst using them.

So inny or outie, flat, hernia’d, wonky or creased, just remember that you always have a choice with your bags, if you want to try something new, that is your right, speak to your stoma nurse or head direct to ostomy sites and trial your own.

Let me know your experiences of convex bags!

 

Sam xx

 

 

 

This post was sponsored by Clinimed, I occasionally work with companies, but I will only ever give honest reviews and every business I work with are personally trusted by me.  My audience is brilliant and so I only want the best for you guys!