Over the last few years photographs of young women baring their ostomy bags on beaches across the world have become a regular sight on social media feed, so much so I don’t even notice their bags anymore.
Ever since the first photo appeared on twitter of a “bag on the beach” I’ve been trying to get up the courage to bear my belly to the summer sunshine – but I’ve never quite been brave enough.
But this summer after years of hiding my pasty white belly from the world I finally plucked up the courage to wear a bikini for the first time since my operations.
For years I somehow had the confidence to wear the tiniest little string bikini, you know the ones which are just a little flimsy triangle of material – not even enough to wrap a sandwich in let alone cover your modesty.
In my experience those tiny pieces of cloth are designed to cause as much embarrassment for young women as possible. Firstly they never fit properly and, even if they do, they happily malfunction if you try to do anything other than lie flat on your back sun worshipping all day.
There’s nothing like the horror of being hit by a wave or shooting out of the end of a log flume only to realise you are topless and flashing your boobs to the whole world, all while your top floats around taunting you, looking rather like a black turd bobbing around in the water.
For all those reasons, and due to a lack of confidence, I opted for a much safer alternative for my first outing in a bikini since my operation – the high wasted granny pants and bra top.
Despite my massive pants pretty much covering all but the very top of Winnie, walking out to the pool in Santorini on the first day in my bikini filled me with a sense of dread. I was worried people might stare; perhaps wonder if it was sanitary for me to be in the pool; and what they would think when my belly started to expand.
I hardly notice Winnie in my day-to-day life anymore; I can wear pretty much anything I want and don’t really care if people can see the outline of my bag under my dress or top, but for some bizarre reason the thought of lying by the pool with my bag on display frightened the living daylights out of me.
It was ridiculous to be so worried and insecure, naturally no-one batted an eyelid.
Actually the hotel we were staying in was so small I would have felt comfortable going the whole hog and I wish I’d taken a tiny little string bikini in my bag in case I’d got the guts to go for it by the time we left.
To be honest it was probably for the best that my bag was securely tucked away – the wind was so strong pint glasses went flying, so my ostomy would have been flapping around like a white flag in the wind which wouldn’t have been pleasant for anyone.
Hopefully one day I will feel comfortable enough to strut along a beach with Winnie on display, but I don’t think I’ll be swimming in a tiny string thong any time soon, experience tells me not to risk outfits secured by flimsy knots after a certain age.
I hope if you’re going on holiday in the next few weeks you have the confidence to wear a bikini, if not loads of department stores have some really stunning swimming costumes on sale at the moment, including ones with tummy control and little skirts to hide any telltale signs of your bag.
This is the one I wore two years ago in America, which was great at covering my ostomy so soon after my operation…..it also helped after eating my own weight in burgers!
Last year over 21,000 colostomy bags were prescribed across Wales.
Take a second to think about that….21,000.
Now, that’s a lot of people who’ve had major bowel surgery in a small nation.
According to Google (the source of all things) 3.063 million people live in Wales, so no matter how you look at it there are a lot of people living here who are getting on with life with a stoma.
I have boxes of appliances (a posh word for bags) in my little flat – and so many lotions and potions for my stoma I have a dedicated bookcase thing for them all – I simply can’t picture what 21,000 bags looks like.
Yes, it cost £4,189,877.07 , but as someone with a permanent stoma I can’t live without my bag…..I’m not sure the same can be said for the £5,105,411 spent dispensing paracetamol in the last 365 days.
Today is World IBD Day, and in the spirit of awareness raising I thought I would take a few minutes to destroy some myths about living with IBD and a stoma is like, by answering a few of those enjoying questions I tend to get thrown my way which really really really wind me up!
Since I was diagnosed with Ulcerative Colitis, well YONKS ago, awareness of IBD has gone through the roof.
But some of the things people say to me – even friends – show that there is still a lot of stigma and confusion out there…..and at times a lot of blame is laid at sufferers doors.
So here are my top FIVE myth busters – basically all the things people say to me or have been dying to ask me for years, and have the bubbled over and burst out in a moment of total honesty after a few drinks….
Well, you don’t look sick?
Why thank you very much, that’s very nice of you to say……..
Argh! This is one of those statements which has followed me around my whole life….and it is a massive lie as I often looked horrendously sick.
Not all illnesses show, FACT, and not all disabilities mean being in a wheelchair, FACT. Some chronic conditions are invisible – but that doesn’t mean we are making it up.
Unless I wore a badge or had a sign over my head you wouldn’t know I had ulcerative colitis, and unless I wear a bikini (or you are lucky/unlucky enough to see me naked) you wouldn’t know I had an ostomy.
It’s always really upset me when people think I am making my illness up. Why the hell would I? Who would pretend to have Ulcerative Colitis: It’s not exactly glamorous.
It’s humiliating being questioned and getting dirty looks when you use a disabled bathroom, being stopped at airport security to have your ostomy bag checked for drugs, or running around like a maniac looking for a toilet before you have an accident.
I’ve spent a lot of my life in an awful lot of pain, in hospital, and then recovering. I spent most of my teenage years living a daily battle, and I’ve got the scars to show for it.
But I shouldn’t have to life my t-shirt to show them to you for you to believe me…..my illness is not Santa.
Didn’t you cause your Ulcerative Colitis through eating junk?
Give me a break! No, absolutely, and unequivocally I did not.
Who the bloody hell knows what causes Ulcerative Colitis and Crohn’s Disease….but I can tell you one thing, me eating some sweets 100% didn’t make me ill.
I once appeared on the telly to chat about UC and was asked about this….my reaction was not good.
I was brought up on a healthy diet of home-cooked food, no take aways, in a house hold of non-smokers. I was too young to drink, and I was a studious school girl who ran for her cross-country team and played in a local brass band.
Even if i’d stuffed my face with rubbish and drank etc I wouldn’t deserve this….no one would.
At the end of the day, I will be the first to admit that my diet since I’ve been an adult has been far from perfect. I probably drink too much wine, and eat too many sweets (I have cut down massively), but I mostly live off spinach, fish and pasta.
But at the end of the day, I’m not injecting heroin into my eyeballs am I?
Can you plug up your stoma? Do you have to open a valve to poop?
This may sound silly, but I’ve been asked these things.
The answer to both is NO. The first one is dangerous, the second is just a bit confusing.
I still poo, but just in a different way. While others poo though their bum (put in a crude way) I poo in a bag….It may sound gross, but it’s not dirty or unhygienic. Well, no more so then the normal way, and probably better as I can see what I’m doing.
The bag isn’t changed every time I go to the loo, it opens at the bottom and is emptied…simple.
And it never stops, I can’t switch it off. Which is why I’m still sometimes caught off guard and have to run like mad to find the nearest loo.
Why are you drinking WINE and eating sweets if you are so ill?
Well deserved glass of wine
Well why not? And to be honest after my operation I’ve never been so well, and can do the majority of things, well, within reason.
I do get a little bit angry when people try to make out that I shouldn’t be eating something – while stuffing their own face with crisps, cake, chips and chocolate. Just let me get on with it, I don’t tell you what to eat.
I’m lactose intolerant – so i don’t eat cheese, cake, chocolate, and a whole array of yummy things unless I get my hands on dairy free ones – I also don’t eat spicy food, and rarely eat fast food.
I mostly live off spinach, eggs, potatoes, pasta and loads of salad….which my stoma doesn’t really enjoy but I eat anyway.
Also, it’s a fact that sweets help me and marshmallows and jelly babies are actually listed as medication for when I have bad output days with my stoma. Yes, I often stuff my face with them despite that – but I go to the gym at least four times a week and I walk everywhere.
The fact is that you only have one life. For years I had to analyse every little thing I ate, and had people constantly watching me. I still do to an extent, and it drives me mad as I am a fitness fanatic, and I often have people who don’t look after themselves at all having a go at me…
Are you anorexic, why aren’t you eating anything?
Like many women I focus a little bit too much on my weight. I’ve previously spoken about my feelings about it and the problems of my ever shifting size while living with IBD.
The picture of me above was when I was painfully thin after my first op.
But I’m not anorexic, and it hurts when people say things about my weight, comment on my eating habits, or asked me why I wasn’t eating when I was scared of putting things into my body because I was in so much pain.
No, while one of the symptoms can be going to the toilet a lot, it can be the other symptoms which can be the most crippling.
The illness goes way beyond the toilet stall, and everyone who has IBD tends to be different.
My case before my surgery was extreame, with severe blood loss, non stop toilet visits, horrendous pain, crippling fatigue, weight loss, and even at one point my hair started coming out.
I also now have bad joint pain, and osteophrosis from years of steriod treatment.
Anyway, enough with this depressing stuff…Happy World IBD Day
To end this I want to say, IBD makes me different on the inside from most people as I have an illness which makes my body do horrible and painful things.
I also don’t have a large bowel and my bum is sewn up.
But I am a normal person, who can do pretty much everything everyone else can. I just need some medication and a bit of TLC to help me stay healthy, and to look after my stoma.
Happy World IBD day. Let’s keep sharing awareness together.
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!
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’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.
I’ve always had an ongoing battle with my weight, let’s put that on record.
I have bad body confidence issues, and I rarely realise quite how tiny I am until I see pictures – basically I simply don’t see what other people see when they look at me.
I’m currently the happiest I have ever been with my weight. My training at the gym and healthy-ish eating regime has allowed me to get into the right-side-of-normal weight bracket for the first time since before my illness began.
But even now that I’m happy and well I still think people judge me.
I know when people look at me they think I’m too thin, skinny, anorexic even, but this is me – I am tiny, and it’s my body after all.
have a sexy stoma bag!!
Me & Winnie at Gay Pride in Bristol – just a little bit burnt
My comfizz underwear – amazing support but not sexy!!
Bend and stretch 🙂
Wow did I really try to eat all that?
Just after second op
gym
There is always so much said in the media about tiny people: we get a lot of bad press, and I guess I’m a bit of a hypocrite because when I look at thin girls I also jump to the same conclusions as everyone else.
But the fact of the matter is, while being skin and bone isn’t a good look, some people are just thin – either because we are built that way, or we have an illness you can’t see.
I have Ulcerative Colitis, and when I was model-skinny it was because my bowel and anything I put in my mouth was literally falling out into the toilet – I was tiny because I was chronically ill, in agonising pain and feeling like I was going to die.
I 100% did not appreciate someone coming up to me and saying, “that girl needs a good feed” or, even worse, “I wish I was as thin as you” – you really don’t, believe me!
I also didn’t appreciate people watching me eat ( know some did it out of concern) – or even worst commenting on how many times I went to the loo which was a major part of my condition.
I guess what’s always made all this worse is when the cake is passed round I can’t eat it – I might be lactose intolerant but the fact I turn it down seems to shout that I have an eating disorder.
Either way there is an assumption made (even by me shamefully) that we choose to be this size – and the looks and comments always hit you right where it hurts.
Over the years my body shape has morphed, with it being unrecognisable from year to year either through severe illness or healing drugs.
Looking back at pictures I hardly recognise the person at times…the moon faced girl, with a giant lollypop head (from steroids) balancing on a skeletal body; the bloated frame of a fresher enjoying booze at uni; and the painfully thin, stripped to her ribs teenager covered in bruises and wires.
I now know how terrifying it must have been for my family to see their daughter wasting away, especially in the months before they diagnosed me.
I’ve been so thin it has actually hurt.
Have you had that?
It’s not just not a good look, it is actually painful to be that tiny. I’m talking about when your own ribs and spine stick out so much they cause you pain – when you can’t lie down because you’re so bony.
Yes, I’m not going to lie, I’m obsessed with my body. 110% obsessed with having a good, fit, healthy, and well, decent sized body, I love the gym and I eat well – but I will not weigh myself.
That’s because I am actually obsessed with my weight.
After years of being forced to monitor it non-stop to check every ounce and kg vanishing from me down the toilet, it’s become ingrained in me to the point of an almost obsession, a bit like checking my poo.
So I only weigh myself when I have to (like when I am in hospital). And I now check my body through how comfortable I feel in my own skin, and that pair of jeans – it has got to a stage where I can say that I am frightened of loosing weight, and want to stay as I am.
Yes, 90% of all of my body image issues, battle with weight, and my constant collar bone is due to my battle with IBD – it can strip me of 2 stone in just a few weeks, it is frightening how fast I waste away.
But I will put this on the record, probably 10% of how tiny I am is down to the fact that I grew up thinking being thin was the way forward (due to magazines and pop stars) and even now, as an adult, adverts and movies tell me I need to be slender to be hot.
If it was up to me I would be more curvy, more athletic, and a bit more womanly – but I will never be that shape, my body simply isn’t made that way, so i work hard to look after what I’ve got.
I have my imperfections, and being small has taken it’s toll on my body and battered it over the years. I have Ulcerative Colitis, I have a stoma, and I have skin conditions and well have had osteoporosis since i was 24.
But for now I am healthy, and I am happy with how I am – even if I do struggle to get jeans to fit, and get endlessly frustrated by the lack of my size in the shops.
I would just love it if people would have thought over the years, when I was struggling to walk, vomiting and running back and forth to the loo, to think it might be insensitive before telling me to fatten up; calling me anorexic; or saying “i wish i was that thin”.
I was living on the edge of hospitalisation and in chronic pain – if my daughter is ever that thin I will be panicking – so no you don’t wish you were that thin!
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.
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.
morning
gym
dinner
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.
The Welsh Assembly will be looking at hospital food in Wales – as more than ten people have signed it.
I’m delighted, but to give it more weight I would love hundreds if not thousands of people to get involved and make sure our voice is not ignored.
Otherwise they could really dismiss it as my insane ramblings when I was starving and full of drugs.
I am hoping Crohn’s and Colitis UK, Ostomy Lifestyle, Campaign for Better Hospital Food (England), and allergy, vegan, vegetarian, lactose free, gluten free etc and health bloggers, campaigners and patients will get behind me.
Today I used my column in the Daily Post (in North Wales) to share my experiences with food in hospitals with my lactose intolerance, ulcerative colitis and having an ostomy bag.
I am hoping to hand in the petition alongside a bundle of people’s own experiences to the Assembly Members on the steps of the Senedd next month.
To do that I need your help.
The petition runs until December 4. I would love for anyone who has ever eaten in a Welsh hospital (or had a relative or friend who has) and wants to see improvements to sign the petition – the more people who sign it the better.
I think this will push the Welsh Government to seriously look at standards – if it is just my experience it could be easily dismissed as a party pooper and groaning fussy idiot after all.
I also can’t rock up with one sheet of A4 – that would be pathetic. I want to take a lorry to lift the petition into the arms of the waiting politician.
Today my official campaign to stop the slop finally got off the ground.
As you all know I’ve been banging on and on and on about NHS food for years – until a few weeks ago, starved and delirious, I finally snapped.
My mission is simple but will need a lot of support.
I want the Welsh Government to look at the food the Welsh NHS feed their patients, investigate and see if it is up to scratch.
Then I want them to give staff the right support and facilities to feed people (including tailoring meals for people with certain conditons and allergies) what they need to help them get better – instead of banging their heads against a brick wall and taking away full plates of food.
I know I will come under fire over this campaign – I am brutally honest about my negative experiences – but if it sparks improvements people can hurl rubbish my way and I will happily duck.
This is not about undermining the hard work of the amazing doctors, nurses and catering staff in the NHS.
I admire them greatly; they’ve saved my life; held my hand; stayed with me when I am frightened and gone above and beyond their jobs to keep me alive and strong over my many years of chronic illness.
They brought me back to life as a baby, and also gave me back my life from the grip of Ulcerative Colitis after so many years – for all of this I will never ever be able to repay them.
I am literally in awe of the NHS and the staff that work for them – but that doesn’t mean I don’t want to see improvements.
This campaign I hope will help them to do their jobs more easily and without having to endlessly deal with hungry, angry patients, who are not getting better because they are not eating properly.
My petition has appeared on the Welsh Assembly website and I need you all to sign it (if you want to of course).
Ludicrously I only need to get 10 signatures for it to be considered by the committee – which could mean I could ask get 10 people to agree AMs personally have to give free lollipops to donkeys (and if it is devolved) they would have to talk about it.
Please help me with my campaign, hopefully it can make just a little bit of difference for the greater good. I will not stop banging on about this until something is done – and I know you all would like me to shut up!
In the meantime please share your experiences, pictures of your Welsh hospital food, and anything which might help to build up evidence in this campaign.
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.
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.
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.
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.
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.
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
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.
A blog about living life with an Ostomy. How life goes on and how wonderful things can be achieved. It is also the perspective of a 30 something woman and life in general!
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!
The big stoma bucket list 