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’ll keep this short, mostly because I’ve got a stinking hangover.
It’s day three, but I’m writing about day 2 of my blog a day for IBD awareness week, and I’m a year older.
All I can say is that I can’t handle a free bar – that’s not really to do with my IBD, more that I am simply not good with wine.
I’ve known that I’m a lightweight for years, but not drinking and journalism don’t go hand in hand, oh and I do love a good glass of cold white wine.
I want to put one thing on the record: just because I have Ulcerative Colitis it doesn’t mean I can’t have a good time.
I’m allowed to drink, eat the occasional bag of chips and let my hair down – I just have to be a little bit more careful than the average joe as I can get into sticky situations a lot more quickly.
To be honest with you that’s not really down to my illness, it’s more that I’m tiny weeny and often forget I can’t drink a lot of wine despite my best efforts.
It was one of my editors that once told me: “Rach you eat like a tiny little bird – you should drink like one too”.
I ignored those words of wisdom – sometimes they come back to me and echo in my brain in a Yoda like way when I’m getting in my third large glass.
At times when I am ill I often cut out drinking all together. I can and have stopped drinking for months on end. Stopping the booze does help a fair amount, and it is nice to go weeks without waking up once with a head like cotton wool.
But we live and we learn.
Winnie is not a fan of cheap wine, she goes green and sickly looking, and often has a right paddy. To be honest the only time she ever chooses to leak is when I’m hungover and it is literally the last thing I want to deal with.
Anyway, today I’m 28, and I have woken up feeling it.
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.
I can’t fart. That’s a fact. Well, if you’re going to be picky, I can’t but Winnie can…..and boy does she choose her moments.
If you haven’t met Winnie, let me introduce her. Winnie is not my dog, great-grandmother, embarrassing friend and whoopie cushion or some sort of windy companion. She is my stoma – and we have put up with each or for the past 18 months since I had an operation which pretty much saved my life.
Today is Ostomy Awareness Day, and I wanted to share with you a few home truths about what living daily with an ostomy is really like. Public awareness of ostomy bags is next to none. Until I was faced with surgery I thought that only old people with Zimmer frames had stomas, ostomy and colostomy bags. I was sure that they were massive, ugly, heavy things that people had to carry around on stands and have emptied by nurses and carers – I’m pleased to admit that I was TOTALLY WRONG!
Having an ostomy does not make you any different from anyone else – apart from it probably makes you superhuman (in my humble opinion that is). We still poop, but only a little differently than most people. As far as you know the stunning woman sitting across from you could have a bag, the young lad riding the bike or the weight lifter at the gym. These days bags are so discreet Ostomates (the cool name we like to call our club or colon free folk) you can wear swimming costumes and tight fit party dresses without anyone ever knowing you have one – unless it fills up with air and then it’s a whole different ball game.
Most of the time me and Winnie get on just fine, but there is a whole lot to having a stoma that most people don’t realise. When Winnie decides to have a paddy she really goes for it. She doesn’t like certain foods, hates fizzy pop and rejects various bags at the toss of a hat leaving me with red raw painful skin. But she saved me from an illness which was destroying my life, and, well killing me. I can now travel the world, enjoy life, write for hours on end, and just do things most people take for granted – I used to be chained to a toilet seat and often collapsed in pain.
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1. Sprouts come out whole!!! It’s a bizarre fact that no matter how much I chew some food it seems to reform in my digestive system and come out the way it was cooked in my bag. This happens with peppers, mushrooms, sweetcorn, peas and sprouts, and it hurts a fair bit when it happens, as a stoma is only a small opening for a whole sprout to fit through. Let’s just say it made for a very interesting boxing day!
2. I can’t fart – but Winnie can and she sure chooses her moments. For days Winnie won’t make a sound, but then, when I’m sat in an important meeting, in a quiet court room, on a romantic date with my boyfriend or any other sensitive moment, she will thump away to her heart’s extent. She seems to know the exact moment to speak up, and does it with such eagerness and determination I just have to laugh. I used to try to stop her with my hand, muffle her with clothes, but that just fuels her fire. I have learnt to just smile laugh and tell whoever is nearby that I have a stoma and she is having a bit of fun. I tend to find if you are not awkward about it either is anyone else!
3. I can still wear nice clothes. Yes I have an ostomy but I can still look young, hip and sexy – well as much as I ever did. I have had to change some of my fashion sense, and don’t wear a lot of body con dresses any more, mostly due to confidence! But I am not living my life in baggy t-shirts and walking around looking like I’m wearing a giant black bin bag. I can go swimming, run, jump and hopefully even skydive.
4. It can be fascinating. Having a stoma can be very odd, but also fascinating. I am often in awe of the way she works. She moves and appears to have a life of her own – she is after all a part of my bowel on the outside of my body. I don’t watch her all day, but sometimes, when I’m changing her I like to check everything is ok, that she has no cuts, and often I can’t help but laugh when she chooses that exact moment to start moving around.
5. I have no back passage. Sounds very odd, but after 14 years of agonising Colitis I don’t miss having an ‘arse’. It is now sewn up and totally inaccessible to doctors shoving cameras up it, something I could not be more pleased about! I have no colon, but am surprisingly no lighter than I was when I had it! Weirdly, despite not having a back passage I still, occasionally, get the feeling that I need to push. Obviously nothing happens, but I still find it weird.
I hope none of this has freaked anyone out who is preparing for surgery. The truth is life without a colon is far better than it ever was with one. From time to time I still get pain, and having an ostomy is not without its problems, but I have never been so free. Winnie has giving me my life back. In two days I go to America for the holiday of a lifetime – I couldn’t have done this without her, I would have been chained to a toilet seat.
So happy World Ostomy Day, my stoma is the best thing that has happened to me, and I hope that this day will help to reduce some of the needless stigma attached to ostomy and colostomy bags, and raise some awareness for those who live with them every single day.
This time last year I was watching Wimbledon curled up on the couch. I hardly made it through a point, let alone a set, without drifting off and pouring my Ensure drinks all-over myself. It was around two months after my surgery and I was starting to get stronger, but watching a single point was a massive battle.
A week later I had my first alcoholic drink; sitting on the edge of my seat watching Andy Murray going through his own personal battle. He went on to win the Wimbledon final, while I went on to lift the trophy for the longest time I’d managed to sit without falling asleep or running to the loo. It was a moment of sheer joy and happiness, tinged with tiredness and an overwhelming urge to burst into tears: for the first time in my life I’d managed to watch a whole set of tennis without racing to the loo in agonising pain.
I think that was the first time I’d ever watched Murray, or anyone else, play live without being in pain, or having to constantly pause the match while I rushed to the toilet. I am used to hearing the whoops and cheers from the pubs outside, while I stare at a toilet door, whenever someone wins the final tie-break or scores a goal (in football) – it is rare that I ever see the winning goal, but I always hear about it from the loo.
But if you’d told me that a year later I would be sitting on Henman Hill eating strawberries and sipping Pimms while watching Andy play on Centre Court, I probably would have told you to “stop shitting me” and fallen off my chair!
If you’d told me I’d get up at 5.30am and join thousands of people to drink coffee and read (and re-read) a guide to queueing, while I waited in, what was to be, the longest queue of my life to get into the grounds and simply sit on a hill, I would have called you “ridiculous” and walked away – the very idea would have brought me out in a sweat!
I have an ingrained fear of queues. They actually bring me out in hot flushes. I seem to get ill the moment I even see one; the slightest sign of a line at a till or break lights in traffic seems to trigger my Crohn’s/Colitis at its very worst. Even now my ostomy goes into overdrive the moment I join the end of a line. I’ve had panic attacks and near nervous breakdowns, and yes, I’ve once or twice been so desperate for an outfit that I’ve tried to ignore the pain from my abdomen and I’ve had an accident waiting to pay – what can I say it was an amazing bargain, but it took a long time for me to go shopping again after that.
But last week me and Andy (no, not Murray) packed our bags, boarded the train, and headed off on our once-in-a-lifetime Wimbledon adventure. That’s what a difference a year makes; well an ostomy bag makes!
Our aim wasn’t to touch the Centre Court grass; to sit in the courts with the “quiet please” shushing staff and balls flying at our heads – not to mention the £80 cost. We simply wanted to join the masses on Henman Hill. To join the hundreds of happy if exhausted fans, waving flags, drinking and dancing on the hill-side while Murray plays on the big screen.
I wanted to be one of those happy people the BBC show waving manically at the TV camera when they cut to the hill – it’s something I always dreamed of, but would have been unthinkable before my surgery.
I’ve never been a good queuer. I’m not impatient, but my Crohn’s/Colitis has always made it impossible to retain a place in line. I’ve even struggled with queues in supermarkets, and I’m the person who starts fidgeting even when there’s only one person in front of me. I would go so far as to say that my IBD is triggered by queues; that includes traffic jams. The moment I join one the pain starts, I flush bright red and I start to feel heat spreading through my body – then I have to race to the loo.
I always have to weigh up if I want something badly enough to have an accident. Usually the answer is NO. And that’s why I’m not a shopaholic – well, that was until the birth of internet shopping (but there again I always miss out on Ebay for the same reason!).
Anyway, this time last week me and Andy bit the bullet and joined the queue. As I saw the massive crowds (it was 7.30am) and was handed my queue ticket I felt the predictable rising sense of panic and twinges around my stoma. It took everything in my power not to turn around and run, but we’d got so close and I would be damned if I was turning back now. Why was I panicking you ask?
Because the grounds didn’t open until 10.30am and I was number 4,399!!!
The only thing I could think about was toilets. I’m obsessed with them, but if you had this illness you would be too. I clocked them as soon as I entered the queuing area. I was extremely excited to be there, but the first thing I did was to look for the loos. I was terrified they would be disgusting, or that my ostomy bag would explode while I was waiting in line with the thousands of other people. I needn’t have worried. The Wimbledon organisers have an amazing system; they have two people constantly checking the loos to make sure they have toilet rolls and they are clean! It was the best system i have ever seen.
Queueing was awesome! I couldn’t believe how much fun we had, seeing as we were only sat in a field, but the atmosphere was incredible. I was nervous about Winnie, but after a few hours I forgot about her. We made a friend in the queue, and ended up spending the day with Stacey, who had come over from Australia!!! We sat reading, and re-reading the official queuing guide, eating and drinking and gradually making it to the front of the queue.
We got into the grounds at around 11am. Queuing had been a doddle! I couldn’t believe how scared I had been. Yes, I wouldn’t have been able to do it before due to the severity of my illness, but I would recommend joining the queue to anyone. I was lucky Winnie was fairly well behaved and didn’t need changing – but if she had there would have been facilities. It was so much fun and seemed to take no time at all, even if we were exhausted and smelly by the end of it.
And Wimbledon was awesome. I loved every single second, and it was exactly how I had always dreamed it would be. The hill was heaving by the time Murray played, and in a weird twist I appeared to be sat next to someone off The Only Way is Essex or Made in Chelsea or something along those lines – anyway I recognised him, but I don’t know where from!
A warning if you go – the hill is very very steep, and gets very crowded very quickly. So if you have IBD and need the loo it might be better to sit lower down. My calves were killing me after running up and down, stepping over people to get to the loos, oh, and maybe to get more Pimms.
We probably will never get the chance to go again, but I’m so glad I finally managed to put aside my fears, and my illness, and go and do something I’ve always wanted to do. Murray even won, just to put the icing on the cake!
Oh, and in other news, we saw the Pride parade – the only people in the world to stumble across tens of thousands of people while trying to find somewhere to shelter in the pouring rain! Awesome!
Halfway through dialling the number for the police press office today I got a very unexpected phone call. Totally out of the blue I was asked if I could appear on a very well-known sofa tomorrow morning, alongside some very well-known characters (some might call one of them a national treasure) to talk about a not very well-known subject!
Ok, I will stop being so cryptic, before you start thinking I’m going on Jeremy Kyle to talk about my love life, I have to tell you all….
I’m going to be on BBC BREAKFAST
Please don’t choke on your cornflakes – or send nasty tweets about my awful outfit or too short legs
Yes, that’s right folks, I am going to be joining Bill and Louise on the famous red sofa to talk about Crohn’s, Colitis and living with an ostomy. I think they’re going to be getting more than they bargained for. I might almost be too outspoken and have too much of a back story for what they are after, but I guess they will have to cope with that. This is the first time I have ever been on national TV; in fact I think this is the first time I have ever appeared on the telly – apart from possibly being seen bobbing around in the background on a North West Tonight report trying to catch a suspected criminal going in to Chester Crown Court.
If you know me, have known me, or have been interviewed by me, and didn’t know I have Crohn’s/Colitis and an ostomy bag, tomorrow with be a massive shock for you (and you must have been living on a different planet; with no access to local newspapers; blogs; Facebook; twitter or come within 100 miles of anywhere I have spoken in the past year, or 14 years!).
Of course I’m nervous. John from BBC Breakfast just phoned me to check everything was still ok for tomorrow, and I almost chocked on my tea. Being on the other side of the notebook/camera is always a nerve-wracking/bizarre experience, and has always left me feeling confused. But I like to hope I will do ok, as, I guess, if it all goes wrong it will be brought out time and time again at every function, work do and event I ever attend for the rest of my life.
But tomorrow, no matter how bad my hair looks when I wake up in the morning (pretty damn awful); how red my eyes are; or how little I’ve slept worrying about my blabber mouth, I will be appearing of TV screens across the nation. People will be literally waking up to me – how horrifying! I’m so sorry if you wake up in the morning, bleary eyed and spot me making my TV debut. I just hope that whatever outfit I chose doesn’t make me blend into the sofa, or leave me looking like a bouncing head with an invisible body, or spark national outrage!
At the end of the day raising awareness for Crohn’s and Colitis is incredibly important to me. I want to show everyone in the world that no matter how alone they may feel right now, there is a light at the end of the tunnel. I want to share my story; increase understanding and show that living with a stoma is nothing to be ashamed of. I want to tell the world IBD sufferers are not just complaining about a tummy bug, period pains or food poisoning – that IBD is a life changing condition, which has serious consequences for sufferers outside the toilet stall. But I also want to show people like me, especially young girls, that no matter how alone they feel there is help out there; they are not alone and will eventually feel better – even if it means having a massive operation and living with an ileostomy – I will never regret my decision to have Winnie (my stoma) for the rest of my life.
I hope I do the IBD and ostomy community proud – if not, you’ll all have a hilarious clip to show of me crashing and burning for years to come!
And I have to pack 13 years of turmoil into a few minutes – which could turn me into a gerbil.
Turn on your telly on BBC One at around 8.10am tomorrow morning to watch me talk about IBD (hopefully!)!
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 