Getting caught short, why toilets need to be accessible for everyone

As someone with an ostomy bag and who’s had Ulcerative Colitis for well over a decade I’ve used more toilets than the average Joe.

Indeed you could probably call me a toilet connoisseur.

I’ve used lavish toilets for mayors, all to revealing bathrooms with glass doors, ones tiled and marbled with arty shots on the walls, and ones which should be visitor attractions they’re so unique and beautiful.

But as someone with IBD I’ve been forced to use bathrooms that no person should have to step foot in – in my desperation I’ve been made to venture where no woman should ever have to go, and I’m not talking about running into the mens!

For me, a lack of toilets or grossness is simply a deal breaker. Just as you wouldn’t go back to a restaurant where you got food poising, I won’t go back if I’d had a bad bathroom experience – no matter how good the food was.

Yesterday I was caught short while out enjoying the sunshine in Cardiff. I’d wrongly thought the toilets at the museum would still be open, but they were closed after cleaning, with a line of security guards literally guarding them from soiling – they must have been waiting for the Queen to come!

Anyway I can’t tell you how upset I was. We’d wandered that way to enjoy our lunch on the grass because I knew there were toilets nearby, and by the time I walked into the blockade of guards I was nearly at explosion point

I got hot, flustered, agitated and the tears started brewing as my boyfriend ran around trying to find me a toilet. Like a hero he found one, but by then our day was tainted by my illness….it was a gut-wrenching reminder of the days when I couldn’t go two minutes without running towards the nearest cubicle.

Anyway I’ve decided to throw my weight behind the Colostomy Association’s and Crohn’s and Colitis UK’s efforts to get more accessible toilets for all, with facilities needed for those who need to change their bags.

Read about the Colostomy Association’s campaign here.

Apparently one in 500 people in the UK live with a stoma, but despite that very few toilets have shelves, some don’t have hooks, and many are unclean….none of this is nice if you need to change an ostomy bag.

The case was highlighted when Welsh mum Caroline Richards’ posted a picture on social media of her stoma products scattered across a toilet floor as she tried to change her appliance. Her story was picked up by the national press and highlighted the need for basic things in toilets, which would make all the difference to hundreds of ostomates lives, and give everyone else somewhere to put their handbag and coat!

Read the story here. 

Disabled loos also seem to be cleaned less often, are more likely not to have toilet roll, and many can’t be used unless you have a key. There’s also the judgemental look when you use one,  and the fear that someone in a wheelchair might be waiting when I come out.

In my many years of running backwards and forwards to toilets I’ve seen how gross people can be – why does anyone think it is acceptable to decorate bathrooms with toilet roll, or eat sandwiches in toilets?

I’ve also marvelled at why the women’s loos are always the furthest away from civilisation; at times down or up flights of stairs, then along a maze of corridors, and sometimes even outside.

This is one of the most photogenic toilets I’ve found in Cardiff.

I’ve hovered above loos you should have to wear a gas mask to use, those blocked with stuff that reminds me of that pretty revolting scenes from Train Spotting, and had those horrible moments when you realise the only toilet roll available is all over the floor.

I’ve perched over holes in the ground terrified of spiders biting my bum, raced into public loos filled with graffiti and probably needles, tried to change my bag with my supplies placed on a dirty pub toilet floors with drunken revellers banging on the door, and endured the joys of broken toilet seats where if you don’t balance your weight on both bum cheeks equally you’ll fall on the floor.

One of the hardest things I’ve ever had to do was trying to change my leaking bag in a nightclub toilet, where it was so dark I had to use the torch on my phone to see what I was doing.

While I’m normally too desperate to make a choice over where I go to the loo, I always try to avoid public toilets at all costs. Basically because they are normally revolting and the queue for the ladies is rarely an option for me.

Anyway, this is the 2016 (well last time I looked it was) and it’s time for public services to be better and more accessible for all members of the public.

In a great move the Welsh Assembly (where I work) has changed its disabled toilet signs to show they are for people of all genders and with all disabilities.

Massive fan of this at the Welsh Assembly @CrohnsColitisUK #IBD #Ostomy pic.twitter.com/j5cPvZbhhF

— Rachel Flint (@DailyPostRachel) April 26, 2016

I just hope this is something adopted by local councils, and then rolled-out further into coffee shops and shopping centres.

Europe with an ostomy and IBD – first trip abroad after surgery

We made it! After nine days, millions of bowls of pasta, slices of pizza and mountains of dripping gelato later we are finally home from our exciting and action packed mini tour of Italy.

Well I say mini. During those nine days we visited a Venice, Florence, Pisa, and last but by no means least, Rome. Oh and a few small islands surrounding Venice along

About a stone heavier – poor ostomy coped with a lot of carbs

the way. So perhaps not that miniature at all really! Ok, so I know they are all extremely magical and special destinations, filled with romance, glamour and fancy hotels, but the experience was really quite rustic and back to basics for me and my boyfriend Andy. We organised the trip off our own backs, joined the students on cheap trains and travelled cross country with our suitcases across miles of rolling countryside, vineyards and quaint cottages before lugging our bags to the next hotel or apartment. It was the closest I have ever come to a backpacking holiday, and made me realise all the fun that I would have had doing backpacking around Europe or Australia during an unrealised gap year – something I never even really let myself dream about because of the never ending ugly rearing head of my Crohn’s/Colitis.

So besides my extreamly sore legs, deep muscle fatigue and bulging blisters on my big toes (my fault for wearing silly shoes to traipse around the whole of Italy) I feel extremely happy. Ok, at the moment I am just happy to be home and in my own bed and having my own personal things around me. The biggest relief is coming home to somewhere where my ostomy supplies are all organised and to hand. Thankfully I packed far more supplies for the trip that I needed, but after a couple of leaks and mishaps, which I think were exasperated by the heat and the exertion I put on my body walking so many miles, I was almost down to my last few bags as we boarded the plane back to Manchester. It was a close call. Especially for my fistula which appears to have herniated and gone a weird blacky green colour… a little worrying…it caused me a world of problems and an extraordinary amount of pain, which at times left me doubled over and hobbling down the street hunched up in agony like an old lady. As nice as it was to be exploring, to be in the sunshine, to see extraordinary places, it is so nice to know that I can visit my stoma nurse if I need to and get more supplies by just calling my delivery company. It’s also so nice to be able to get to free toilets…something that proved to be problematic in Italy – I absolutely refused to pay a euro 50 cents to empty my ostomy bag.

Boiling heat in the sunshine at the coliseum

I’m sorry I didn’t post as I travelled. Both me and Andy made a rookie mistake and didn’t update EE (formerly Orange) of our trip, meaning that when we arrived in Italy neither of us could contact anyone. Meaning we were stranded in a strange city with no way of contacting our families, friends or anyone, least of all the people we were renting the apartment from!! Nightmare! I did manage to get a little internet access eventually, but only for short periods of time.

So as I don’t wont to write one post that’s 17,000 words about the trip I thought I would divide it up into a series of posts over the next few days. Sharing both the sites and experiences of the holiday and any tips and tricks for going away with IBD and an ostomy. Sharing the silly things that happened, what I would do if I went traveling again and also the things anyone should be aware of if flying, travelling, or even thinking about their first adventure abroad after being diagnosed with IBD or having their abdominal operation.

One thing is for sure, it was not as scary as I thought it would be. Life was a lot easier than before my operation. Yes I had a few close calls, and a lot of panics about the lack of free public toilets, but most of this was due to the constant flaring of my Crohn’s/Colitis in my remaining large bowel, which made my fistula extremely unmanageable. But compared to before it was a walk in the park. I got to enjoy everything for the first time without really worrying. Ok, to say I didn’t always look for the toilet constantly, and I didn’t have a few hairy moments along the way would be a downright lie, but I didn’t spend the majority of the trip staring at the back of a toilet cubicle was quite frankly a miracle.

The most magical experience of my life – the gondola

So I hope you enjoy the pictures and ramblings about me Andy and Winnie’s Italian adventure. And I hope you will share your experiences of your first trip post surgery for others to enjoy and gain tips from too.

Back to work with my ostomy – Winnie’s first day in the office