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.

IMG_4025Yesterday 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.

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

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Christmas time with a Stoma – warning it’s rogue nut season 


       
 It’s that time of the year again, filled with too much drinking and stuffing my face with really rich food until I feel basically ill and need to out on my Joey from Friends pants.

I adore Christmas and love everything about it, but Christmas throws a lot of curve balls  in the way of my Stoma and often leaves me waking up with far more than a hangover.

In December everything I normally actively avoid eating seems to hide itself in every day food. Nuts and dried fruit appear everywhere at Christmas; hidden amongst sprouts, in stuffing and in a whole array of amazing treats and desserts.

Most of the year I would turn down nut laden goods (no matter how tasty they appear) as I fear the blockage, sickness and general yuck they cause, but something about Christmas makes me throw caution to the wind and I seem to have a devil on my shoulder shouting “bring on the nuts, who the hell cares? – it’s Christmas”!

I have a very adult taste when it comes to food: my Stoma does not. 

Winnie is like a toddler, she hates green stuff, nuts, wine, veg, but she loves a good ‘take it out of the freezer and stuff it in the oven meal’, you know anything that involves chips and weird breaded animal shaped food. 

I live off spinach, olives, cucumber, basically everything she simply can’t cope with (so I live with a lot of tummy ache, funny farting noises coming from my bag, and green poop) but present her with a sprout, coconut or a nut and she has a total fit and throws all her toys out of the pram totally big time.

Last year was probably the best Christmas of my adult life. For the first time I can remember I enjoyed turkey and all the trimmings without the constant pain of Ulcerative Colitis. I managed to sit through almost the entire meal (yes all the courses), unwrap all my presents and even join in all the family games with only a few visits to the bathroom.

It was magical. I don’t think I have ever been so happy. 

But, despite the pain free Christmas, there were still some issues especially around the dinner table. I learnt a few lessons the hard way, mostly not to get carried away with the festive celebrations, office parties and late night drinking, and to avoid certain foods at all costs, no matter how tempting they might be.

This year I will be avoiding, sprouts, chestnuts, cranberries, Christmas cake, green beans, and many more little treats. 

A word of advice, if you have an ostomy and don’t want to be in agony for hours, don’t eat sprouts.

 I know many people would be relieved to find out they can avoid the little green balls, but I’m quite gutted about this.

 The first Boxing Day after my operation I spent an excrutiating couple of hours passing what felt like a giant bolder through my stoma. Somehow, despite obviously chewing it to shreds, it seemed to reform in my bowel and tried to pop out whole – imagine my shock! 

Blog post: I can’t eat sprouts 

This year I have no doubt I will learn even more lessons about my ostomy, and how bloody picky she can be. 

But either way I’m going to give into the devil and eat what the hell I want – the detox and Winnie’s much earned break can start in the New Year, after all that’s what January is for! 

Day 7: Never give up hope – What I’ve learnt from #7daysofIBD


This week has been all about raising awareness of what IBD is. I hope you’ve learnt something – I certainly have.

What always amazes me about the IBD community is how open, honest and brave the people who suffer from Crohn’s and Colitis are.

Back when I first became ill Crohn’s Disease and Ulcerative Colitis were relatively unknown, they were what Dr Christian Jessen would have described ‘an embarrassing illness’.

Talking about toilets was frowned upon – unless that is you were a lad who could fart really loudly, and then that was, well, your crowning glory.

Social media has it’s downsides (believe me I know) but for Crohn’s and Colitis it has been such a breath of fresh air.

The illness has gone from something people were frightened of talking about, hidden behind the toilet door, to having this massive community on twitter, Facebook, blogs and youtube full of people giving each other support and advice…and hope.

People proudly share their stories of bravery and their remarkable battles to go on to do amazing things, most of which I could only dream of: the ultra marathons; the world record attempts – even just wearing a bikini with a stoma.

The world is unrecognisable from the one in which the teenage me hid in the school toilets, tucking my feet up the side of the cubicle, and trying to be quiet as I tried to curl up in shame.

Now every single day celebrities, politicians and sport stars, and just incredible every day people are sharing their stories in local and national press….it’s remarkable.

It feels like a week doesn’t go by without IBD being in the tabloids, sometimes for weird ‘junk causes Crohn’s’ claims, but mostly for stories which make me want to punch the air and shout ‘you go girlfriend’ – now that would raise an eyebrow in the Welsh Assembly lobby.

Yes I wish people were still more understanding: especially when they tut at me for using the disabled loo –  if my can’t wait card works in Italy why do I sometimes need to pretend to be pregnant to skip the toilet queue when my bag is about to explode (sorry my little rant).

I remember as a teen hiding in the loos, trying to hide my frightening illness, wasting away with no idea what was happening to me – I was so weirded out by what was happening I would rather have died than told anyone.

I wonder what it would be like now for me, in a world of being able to google for help and advice.

But there is no point in looking back in that wishful way, I’m just so happy  things are on the way up for IBD: yes, there is still no cure, it is still a horrific illness, but awareness and understanding is growing on fundraiser, stoma bag selfie, and bare tummy at a time.

No one with IBD should ever feel alone again – get online, learn to laugh at those horrible moments with others, cry, smile, giggle, grumble and vent,  and just support each other.

No one should be defined by an illness – don’t let it rule you, share your experiences and show it you’re the boss.

Day 6: What to wear with an ostomy? What ostomy? #7daysofIBD


I’m no fashionista, but I like to look good – who doesn’t?

One of my biggest fears before my surgery was that I’d spend the rest of my life wandering around in sack-like clothes or simply become a nun.

I envisioned a future filled with sweat pants, baggy jumpers and shape-less dresses – looking like a washed-out celeb in a Pineapple tracksuit.

I also imagined a life without romance, I think I believed that I’d be better off living in a hovel somewhere than have my bowel taken away.

I’m ashamed to say that as a teen and a young woman vanity was the main reason I stubbornly refused the operation for years despite being in hideous amounts of pain.

Having the operation felt like giving up my youth – it didn’t matter that my young life so far had been marred by illness, and the operation promised me a new lease of life.

I was horrified of what it would do to my already shattered confidence and street-cred; basically as a teenager I simply couldn’t think of anything worse than having an ostomy bag.

I’d rather put up with the accidents, the blood and the constant toilet visits, than be thought of as a freak – well, more than people already thought a young girl who spent more time in a bathroom than the playground was.

I mean I wasn’t married, didn’t have kids, what would I tell people, what would they think?

The people they sent to talk to me where lovely, well and happy, but they were in their 50s and 60s and had grandchildren – I could’t relate to that.

Now I realise I needn’t have worried one bit: unless you know about it, or Winnie announces herself, you wouldn’t have a clue she was there.

It was only when I was in my mid 20s that the surgeons finally got a firm grip on me and this time I couldn’t and didn’t really want to get away/

Straight after my first surgery (well as soon as I had the energy) I went through my old clothes and packed anything that was really tight into a bag and shipped it off to a charity shop.

I needn’t have done, but I’m still glad I did.

Ironically having surgery did my wardrobe a lot of good: it made me grow up, and stop wearing outfits that honestly should have been left back in my student drinking days, or really never have seen the light of day at all.

Now

I get a lot of questions about what I wear, and how to dress with an ostomy.

My answer: wear whatever you want, what looks good, but most of all what you feel the most confident in.

You don’t want to wear something where you are constantly patting your bag, checking it, worrying that someone can see it – but you don’t want to feel like you’re wearing a smock either.

I’ve been pleasantly shocked at the array of things I can still wear. To be honest I can wear anything: I simply choose not to wear some things.

For example; I wouldn’t wear a crop top or a dress with gaps in that show my bag – I could, and good on anyone who does, I just don’t feel comfortable doing that.

I love maxi dresses and in total contrast short skirts, but I wouldn’t wear a skin tight body con dress, mostly because if my bag expands it’s too uncomfortable.

I also wouldn’t really wear something too sheer or that clingy gold material, mostly because you can see the shape of my bag through it.

On the days I feel weird from my bag (yes I do have days when I feel really self conscious about it) I distract attention from my stomach (not that anyone can see) with loud makeup, big hair and well, fabulous shoes – not that I need an excuse.

I usually have a little scarf in my handbag for if my bag fills up and I want to hide it – it’s a little handy tip I got from another blogger.

But really I can wear, and do wear, whatever I want: suits; jump suits; short dresses; pencil skits; ball gowns; see through blouses… and even shorts!

I do struggle to find a decent pair of jeans, but that’s because I need high-waist, a petite and a six, which is a hard combination to go by – if you are looking I find Next is the place to go.

I tailor what I wear to how I feel, what I’ve eaten (sometimes) and sometimes avoid eating certain things if I know I’m going to be wearing that tight dress.

I love the glamour – but some days I like my sweat pants, or PJs and baggy jumpers.

But that’s because I’m human, not because I have an ostomy.

 

Day 3: A magical 28th birthday #7daysofIBD #7daysofstoma


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I made it to the grand old age of 28 – it feels like an achievement.

I was after all a premature baby, who was born fighting.

Teamed with my Ulcerative Colitis it has taken a giant team of very dedicated people and a fantastic amount of love and patience from my family to get me this far.

I hope I’m not wasting the gift I’ve been given.

Yesterday was my birthday and I had the day off, accompanied by a stinking hangover. But despite the big headache I had a truly lovely day, deliriously pain free and felt very happy and loved indeed.

My birthdays are always a quiet affair. I like the simple things: a good meal, some wine, a lie in, and no chores all day.

Oh and fab gifts, loads of best wishes messages and some unexpected cards too.

I also ate the thing I try to avoid, as it blows me up like a whale – bread.

Chris spoilt me with some really gorgeous flowers, and we spent the day freezing and feeling sick from stuffing our faces with sweets wandering around the Christmas market stalls in Cardiff, with me getting soaked as someone wasn’t too great at holding a brolly.

I even found a vegan Welsh cake – which might not have helped with my twitchy tummy today.

It was all polished off with my favourite – not Winnie’s favourite – meal at Bills’, spinach, bacon and avocado salad and sweet potato fries….mmmm.

Here’s to many more healthy, happy and pain free birthdays for decades to come.

Day one – red, green and other weird coloured poop #7daysofIBD #7daysofstoma


Seeing red in your ostomy bag is a frightening experience.

Spotting blood where it isn’t meant to be is horrifying for anyone (if you’ve not experienced it I hope you never do), but after 14 years of Ulcerative Colitis seeing red is enough to make my world crumble.

It is the tipping point, the moment I have to stop kidding myself that the agonising pain will vanish (even though i know it never will) and the horrible realisation that I will have to drag myself to hospital.

When I say spotting blood it is more like a massacre – not that I want to frighten any of you.

Anyway that’s beside the point. For the past year I’ve lived without red in my stools – well until I eat something like tomato soup, and then I nearly always forget I’ve eaten it and freak out.

Some foods do weird and wonderful things to my stoma output and turn it bizarre colours which would startle any right minded person and have you running to the doctors whispering “why is my poop bright purple? What exotic disease have I got?”

You probably wouldn’t stop to think you might have eaten beetroot – but there again most people don’t examine their poo for weird qualities like people with IBD have drummed in them to do.

Today I forgot I’d eaten tomato soup, hence I had a little heart jumping moment (like when I see a large spider lurking in the bathroom) when I saw the bright red colour of my stoma bag contents.

As a now slightly seasoned ostomate I’ve taken to taking a little moment to think while I’m sat on the loo – I stop and say ‘Rach what have you eaten that might have caused this…’, before I allow myself to properly freak out that my illness is back or has morphed into Crohn’s disease.

It’s a good job I did – the memory of the tomato soup came flooding back and I visibly relaxed.

The first time my output went green I went mental…what the hell, what did it mean, I hadn’t even eaten anything green!

Green is pretty normal for me: I adore spinach even if my stoma does not.

But for most green is a sign that what you are eating simply isn’t being absorbed – it means you’re having too much fibre, or your food is going through you. This happens to me a lot, as I insist on eating the foods my digestive system doesn’t like, such as: rocket, spinach, cucumbers – which do from time to time cause me a lot of pain through blockages.

I remember being totally freaked out though the day my output went bright green – I mean pretty much luminous – a consequence of some very horrible cocktails the night before.

Bad colourings in cocktails have also led to slightly purple output, bright red and a slightly blue tint – always a really horrendous experience when you’re hungover and confused enough without thinking your dying.

In other news I went to the gym, got drenched posting letters and almost got lifted off my feet on the way home – thanks lovely Cardiff weather.

 

A fussy or unfeedable mouth? Hospital food standards needed in Wales #stoma #lactoseintolerant #IBD


Am I just fussy? Is that why the NHS always struggles to feed me?

I admit I’m a nightmare date or dinner guest: I’m lactose intolerant and have an ostomy bag.

In fact I’m probably every waiter’s worst nightmare: some noticeably roll their eyes when they hear me whisper the dreaded words – I’m lactose intolerant, is that going to be a problem?

But restaurants have adapted, with their allergy menus, and are mostly excellent – so why not the NHS where my intolerance and Ulcerative Colitis was, after all, diagnosed?

When I’m well I eat a diet which would shock any stoma nurse – I live off wilted spinach; rocket; veggie sausages; all types of fish and mountains of avocado – apart from a bit of an addiction to jelly sweets (and no longer diet coke) and white wine, I’m a bit of a health nut.

I avoid sweetcorn, nuts, coconut (less recently learned), peas, bean sprouts, sprouts etc and anything not really chopped up like the plague – I have not eaten a curry in over 14 years after it being a smell that made me literally vomit on my first hospitalization for ulcerative colitis (it has stayed with me).

But when I’m not having a good day and my ostomy is playing up fibre is totally off the menu – even the skin on a jacket potato and a rouge mushroom can cause a blockage and make me throw up.

So, today my last blog post on food in hospitals ended up on the Mirror and Wales Online.

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As a journalist I am used to writing the news – not being the news (it has happened once or twice after I had a right go about claims junk food caused Crohn’s disease).

Video: Junk Food Doesn’t cause Crohn’s

I have come under some criticism for what I said about the food I was presented with – or not presented with – in the Heath, but mostly the article has sparked discussion about people’s experiences with IBD and/or stomas and hospital food which can only be a good thing.

Some of the stories people have shared have been frankly shocking – and to me it is obvious something should be done both in England and Wales to introduce standards and to help the hard-working catering staff understand intolerance and patients’ needs.

In the next few days I am hoping that the Welsh Assembly will approve my petition calling on the Welsh Government to set Wales-wide standards for hospital food.

I want them to look at the amount of food thrown away, introducing menus, making sure patients are fed the right food based on their individual care, and give staff support and training.

Health is devolved in Wales – it is the responsibility of the Welsh Government – and I believe nutrition needs to be looked at. Looking at the 250 plus comments on Crohn’s and Colitis UK’s website a lot of people agree, and I’m not on my own.

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But while I’ve got your attention I want to address a few things that the story misses out.

I’m not still in hospital 

Firstly I had ulcerative colitis for 14 years – was in and out of hospital most of my teenage and young adult life so far, and led a life mostly ruled by bathrooms until I had my surgery when I was 25.

I have an ostomy and it is permanent. I had my first operation to form Winnie (my stoma) over two years ago, and then, due to complications with the disease still being in my rectal stump, had her made permanent (my backside removed and sewn up last year).

For the past year I’ve been the fittest and healthiest in my entire life; I’ve done things I never expected and really embraced my life – it has been a miracle.

Running a half marathon with a stoma.

The out of the blue I feel extremely ill, with excruciating pain at the start of October and that’s when I was hospitalised twice without warning and kept in.

They didn’t know what was happening to me – i was put on loads of fluids, and antibiotics, which made me even sicker as they shouldn’t have been taken on an empty stomach. The dietician and stoma nurse kept telling me to eat, and were totally frustrated I wasn’t getting the right food to sort my output out.

I didn’t know I was going in, I live on my own, my family are in Lancashire, and frankly the majority of my colleges and friends wouldn’t know what to feed me if they tried – people just don’t get lactose intolerance.

This is not the first time this has happened; I’ve had varying experiences in Chester, and been offered bowls of milk for breakfast, stir fry and salad (not long after my operation) and live off dry tuna sandwiches for weeks (as that’s all they could think of) – but in England they did have menus so some time they got it right and it was excellent.

However in the Heath there were no menus, the ward had its own kitchen, what was on the trolley was what you got – if you couldn’t have any of it, well that was that – the dietician insisted to the catering staff that I was allowed to ask for cereal if I couldn’t eat any of it.

People have said why didn’t I go to the shop – when I wasn’t about to faint, or the staff were frightened I would because of my low blood pressure, I did go to the shop. However it was a WH Smith and as someone with lactose intolerance, and at the time on low res, I could only eat crisps and sweets – which obviously was pretty much pointless.

I did continuously tell people I was lactose intolerant, i offered to help, and pleaded to go on the Ensure drinks (which I eventually got), and kept telling the dietician I was scared of loosing weight (which falls off me in hospital) but unfortunately they kept running out.

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Staff did their best 

In my job I have been accused of “single handily trying to destroy the Welsh NHS” – I trust you I am not.

I had the greatest sympathy for the catering staff at the Heath. It was the system that failed not them.

Blog: Nursing is still a caring profession

The catering guy was scared of coming to my bed by the time I left; he would creep over to me like I was going to pounce down his throat or perhaps try to eat him.

He always looked crestfallen at every bed who couldn’t eat the food, due to having had surgery, being on a low res diet, on liquid only – or frankly just not liking the look of it.

I felt sorry for him, even more so when he brought out the allergy sheet and didn’t understand it, insisting I could have the cheesy pasta, followed by cheesecake with ice cream – I obviously disagreed and didn’t eat it.

It’s time for action – but positive not negative

What I want to see is some constructive action.

I’m not looking to be fed with a gold-plated spoon, with British Bake Off style cakes, and caviar – just diet to be treated the same as drugs, fluid and put into the package of basic care.

nutrition is a key part of healing, but offering someone who has just had stoma surgery lentil soup, and a tuna sweetcorn sandwich or nothing as their first meal isn’t right.

Yes she had advice straight after her operation, but at the end of the day once you have had the operation it is an experiment and you should start slow – not with something that may just cause you pain and agony.

Please share your experiences 

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So I would like to know about your experiences of hospital food – yes even the really good ones.

Let’s try and find out what’s going wrong and where it is going wrong.

And, why am I doing this, well I want my experience to mean something apart from loosing all my hard earned weight, it’s pointless me just sitting back and letting the next lactose intolerant or ostomate go through the same thing.

Oh, and next time I want to eat!