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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

When you can’t hold it…

I have seen two stories today about different situations where institutions have put rules in place regarding toilet breaks and it really got me thinking about how distressing this can be for those who can’t just hold it.

The first was regarding comedian Frankie Boyle and how his shows have put restrictions on people leaving the auditorium during his 70 minute show.  Security staff at the King’s Theatre in Glasgow were ordered to escort fans to another part of the building until the performance was over if they left to use the bathroom.  According to the Mirror, the general manager James Howarth said “The show is only 70 minutes long so it’s not an unreasonable request.”

The second story was about St Teilo’s Church in Wales High School in Cardiff that sent out text messages telling parents their children must have a doctor’s note if they want to go to the toilet regularly during lessons.  It said: ‘If your child needs to be allowed out of lessons to go to the toilet then please provide a medical note in the next week so they can be issued with a pass.’

public toilet sign

 

Now I understand that disruption of shows or classes can be annoying to others, but as a person who regularly has to use the toilet and can’t always hold it, believe me, it is more annoying to me than anyone else! I have two different view points on the two stories though.

Regarding the show, it is just so disheartening to know that these rules are in place, though it isn’t great to disturb a show, it is sometimes a necessity.  There is nothing that sets more fear into my heart than the idea of being unable to get to a loo in time.  Take off and landing during flights make me sweat because as soon as I hear the words that the toilets are out of bounds, my stomach churns, my guts cramp and my body panics!

Rules like this exclude people with bowel or bladder conditions from these social occasions.  They increase anxiety and add to isolation.  If you struggle with toilet issues and need to go regularly, then it can be very difficult to mentally deal with being out in public and if you cannot access toilets with ease then it can rule out certain events altogether.  The quote from the manager REALLY pissed me off. It IS an unreasonable request to expect some people to not be able to use the loos for over an hour.  Every theatre/comedy/music show I have been to also tend to have huge queues so leaving it as long as possible just isn’t an option when you know you could end up in a 20 minute queue afterwards.

Invisible disability is everywhere and there are many people with needs and issues that can’t be seen easily and these people shouldn’t have to explain to a theatre attendant their complex medical needs.  Places need to be more inclusive not be excluding people based on disability.

The school story initially upset me a lot more.  The idea of kids having toilet access restricted was quite disturbing as children with bowel or bladder issues have a hard enough time as it is let alone having to produce a doctor’s note.  But in reading the story I think it was just a badly worded text with a genuinely caring message at heart.

The school appears to be putting into place a system where those who have genuine medical issues can have the ability to go to the toilet unchallenged as the school will know which kids have a need to go.  It must be very difficult for teachers to know who is really needing to go and who is doing it to waste time/mess about.  I remember when I was at school that a toilet break was often used to go for a wander/grab a drink/raid the chocolate machine/chat to my boyfriend… (Don’t tell on me!!!)

I suppose the problem with this is that some kids may develop symptoms of illness and need to suddenly go often and without a doctors note they may not be believed.  Children, especially teens tend to hide symptoms of what they deem as embarrassing illnesses.  They may have not even told their parents, let alone been to the doctors yet!

ibd blogger office loo toilet ulcerative colitis

 

The other problem is that sometimes it takes a long time for doctors to correctly diagnose these illnesses, I speak to so many people with IBD who were initially fobbed off with a diagnoses’ of everything from piles to anxiety.  Perhaps we just need to trust that some students will sometimes need to go to the toilet more often than others in order to not isolate, embarrass and upset those who have a genuine need.

If you have ever soiled yourself in public you will know that this isn’t a joke.  It is mortifying and can make you feel that you should stay home forever, it can make you feel embarrassed, humiliated and inhuman.  It can make you feel life isn’t worth living.

Are these things worth it to stop some minor disruption to classes and social events?

I think not.

 

Sam

Poo pourri review

Who has seen the Poo Pourri campaign? I LOVE it, it’s a brilliant advert that after I fell on the floor howling, I wanted to try it straight away! Take a look…

With over 31MILLION views on YouTube, I’m not alone!

Here’s what they say.
“When you spray Poo~Pourri into the bowl before-you-go, our proprietary formula creates a protective barrier on the water’s surface. This barrier is designed to trap unpleasant bathroom odors beneath the surface and keep them out of the air. All you’ll smell is a refreshing bouquet of essential oils!”

poo pourri for ibd

I can honestly say this product works!!! I thought my crazy explosive jpouch poos might be Poo Pourri’s nemesis but even for me, it works. The bathroom actually smells better when I leave!

I know it seems expensive, but it really lasts. I got my bottle for Christmas and I have barely used a quarter of a bottle and that’s with me going 8-10 times a day!

I take it out with me if I’m going to friends houses or out in public and it’s just an extra little safety blanket to know that I’m not going to feel embarrassed of the smell. This is super gross but because my digestive system is cut short, food isn’t broken down in the same way and so sometimes my poo smells a bit like vomit! (YUK!)

I love Poo Pourri and think they need to do an advert for people with IBD, ostomies and Jpouches!!! (If you need someone for that ad, I am IN Poo Pourri!!!!) I actually left a review for them, something I never do, as I am so behind this product.

poo pourri for ibd ostomy jpouch

Smell can be a massive issue with people with IBD and a product like this can help a lot. I recommend this all the time and wholeheartedly think you should try it. They do a ‘stink free guarantee’ and if it doesn’t work, they’ll give you your money back!! How’s that for confidence!

Give it a try, you won’t regret it!

Sam

 

This review is not paid for by Poo Pourri or endorsed by them, it is a genuine review of a product that I love.  If you buy it through the links in this site (the amazon ones), I will earn a few pence for recommending it.  It will cost you no more but helps fund this site a teensy bit!

Thanks x

 

To the woman who tutted at me using the disabled toilets…

Dear lady who loudly tutted at me using the disabled loos,

I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the disabled loos.

The fact is that I have no bowel. I have a pouch formed from my small intestine which can’t handle volume and so I have to go to the toilet and poo several times a day. My lack of large intestine means that my stool is totally liquid as I have no means of absorbing the fluids in food and so its really hard to hold it when I need to go.

I sometimes have accidents which means a large toilet that has a sink right by me means I can clean myself up when things go awry.

I hate having to use the disabled loos as I have to deal with people like you staring, nudging, tutting. And whenever I can, I use the ladies toilets. Just so you know, disabled loos usually smell bad and don’t seem to be cleaned as often or as well as the ladies and so I wouldn’t choose this option unless totally necessary.

Whilst I’m at it, I’d like to address the cleaner in the supermarket ladies toilets I used this week. As I ran in, knees together, bursting through the door and running to the cubicle, I’m sorry that the noise of my (lack of) bowels made you burst out laughing.

I can actually take the sniggering as since I had a pouch made from my small intestine because my disease ridden colon was removed during surgery, the noise I make when I defecate is hilariously loud. Seriously, I get it. It’s comedic in it’s volume.

But before you ran outside the loos and called to your friend “OH MY GOD! You should hear the noise in there!!! I wouldn’t go in if I was you!!!!” Perhaps you could have noted my daughter who was waiting outside with our trolley because her mum had had to leave her stranded to run to the toilet. Perhaps you could have stopped and heard me sobbing with pain because the acid in my stools has no way to be neutralised because I don’t have a large intestine and so opening my bowels actually burns my skin.

Perhaps you both could have shown a little empathy, a little compassion, a little understanding.

Poo is funny. Disability is confusing.

I get that.

But humanity and care for fellow human beings is a choice.

To everyone else reading this, the next time you see someone who doesn’t “look disabled” using a toilet.

Or someone bursting through and crashing into the toilets noisily.

Take a moment. Remember that not all people who have the right to use disabled toilets are in a wheelchair. Some of us have a jpouch, a lot of us have an Ostomy bag that needs emptying and changing with the use of space, a sink and a bin. And even more of us just don’t want to shit our pants in public.

Think about the nearly 300,000 people in this country who have inflammatory bowel disease (not to mention the huge number of people with IBS!!!) who need to use the toilet urgently, noisily, smellily…

It’s an embarrassing enough thing to deal with before having to see disapproving looks or hear your laughs and jeering remarks.

Be kind yo…

Peace out

Sam xxxxx

The office of an IBD blogger…

When you spend as much time on the loo as you have to with IBD and blog about it, the throne becomes a bit of an office…

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

Radar Key – disabled toilets

The National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Disability Rights UK believes that everyone who experiences ill-health, injury or disability should have the same freedom and independence as other citizens. An important part of that freedom is having the confidence to go out, knowing that public toilets will be available, accessible and will meet your needs.

You can also purchase the 2013 edition of the National Key Scheme (NKS) Guide which includes the location of the 9,000 NKS toilets fitted with the NKS lock.  This guide is the only one of it’s kind and really does open doors to independent living. As well as an app.

This information comes from NKS and you can purchase your own key for over 9000 disabled loos around the UK from them for just £4.00.  This can be a life saver if you suffer from Ulcerative Colitis or Crohns during a flare up or if you have a stoma, it enables you to have access to a toilet to empty your bag and have a sink or basin in the cubicle to be able to clean yourself.

disabled toilet key

Having to live with IBD or with a stoma can be difficult, if there is something that makes your life just a little bit easier, surely it’s worth it.  I haven’t had a key in the last ten years as I think I felt I wasn’t ‘disabled enough’ – I felt like perhaps Id be taking something away from others who needed it more.  Silly, I know.

Now I have the stoma and ileostomy I think Im going to get myself one of these.  Id rather have the key and not need it than need it and not have it!
For more information go and take a look at the Radar site.

Love Sam x

Where's the loo?!

There is nothing worse than being out in public and all of a sudden you feel that sudden tug deep in your guts.  For most people it is a fleeting thought of ‘oh I need the toilet’ for IBD sufferer, the fear strikes…

Oh fuck, where’s the loo?!!

Your eyes dart around looking for the heavenly stick man sign, you start the knees together dash towards the nearest shop, they tell you their facilities are for staff only.  You want to punch them in the face but know that would only waste time.  The long term IBDers will probably have a packet of wipes and a spare pair of pants in their bag or car but that’s for emergency use only, you are hoping it won’t come to that.

public toilet sign

Here are a few things that could help in this shitty situation…

Join the NACC it is £12 a year and you get a ‘Cant Wait’ card.  The card carries the message “Please help – our member has a medical condition which is not infectious and means they need to use toilet facilities urgently. Your kindness and cooperation would be much appreciated“.

It avoids the need for an awkward conversation but remember it doesn’t give you the right to use their toilet, it just may help people be more understanding.  I’d rather have a card that says “Please let me use your toilet or I will shit on your floor and neither of us want that”.

NACC can't wait card

The Radar National Key Scheme is £13.99 and gets you a guide to over 9000 loos in the UK as well as a disabled toilet key.  It offers you access to locked public toilets giving you freedom and confidence to go out in public.

disabled toilet key uk

Radar have also produced a Toilet Finder app that is available on iTunes.

mzl.pqaqccwv.320x480-75                                          toilet finder app

 

 

Love Sam xx