Braving a bikini after ostomy operations – what was I so worried about?


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! IMG_5956

It’s not all about poo – five things about stomas and IBD this #WorldIBDDay


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!

I’m not going to try and explain to you exactly what Inflammatory Bowel Disease is, as Crohn’s and Colitis UK do a much better job at it…see photo below.

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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?

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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?

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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?

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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?

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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.

You can read the full post here.

A battle of skin and bones: the ever changing size of IBD #7daysofIBD

IBD, it’s just a toilet issue isn’t it?

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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.

 

 

 

 

 

 

 

 

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.

Me and Winnie are back – we are sorry we have been away for so long


For the second time this year I’m starting my blog with an apology, which might not seem shocking if it wasn’t for the fact this is only the second post I’ve written in 2016.

The truth is I’ve been a bit of a plonker for the last few months and I’ve done the opposite of what I intended to do in January and totally neglected writing this blog.

I never meant to leave it this long, I even started a few posts but couldn’t find the words – it’s like I ran out of things to say, which isn’t like me at all.

There’s something about writing all day – sitting in front of a computer screen typing away so loudly that aliens can probably hear me on Mars – that just means the last thing I want to do when I get home is write: hardly a great quality for an aspiring novelist I know!

But last night as I lay awake in bed tired, my mind jabbering on about things I needed to do and listening to my stoma perform its own one man band version of Pomp and Circumstance for hours on end, it dawned on me that I was missing writing my blog and talking to you all.

You see while I like to think these blogs help people in their own little way; raise awareness and maybe give everyone something to smile about in the darker moments of their lives, I have to admit that they help me in so many ways that it’s hard to put it into words.

When i first started this blog and told the whole wide world about my ostomy there were a few people who were startled. I got a few “I don’t think this is wise/ good idea” warnings, some were concerned I might live to regret sharing Winnie with the world, while I think some others were just a bit freaked out, and I’m sorry to say a bit disgusted.

But I didn’t care, I decided to push it aside and get on with it: us Ulcerative Colitis sufferers are made of stern stuff.

Writing these blogs is therapy to me, I know that now.

I started this whole thing at a time when I needed people to accept me, when I needed help and security, and when I longed for people to understand.

Yes I wanted to try to help people, but I loved getting the feedback, the advice, the tips, and I have been at times moved to tears by some of the lovely emails I’ve had from people who tell me how my blog makes them feel happier, or makes them or their Nan, or their son laugh, or has just raised a small smile in some strange way.

I’ve found my acceptance on here, but I have also broken too many promises.

Life has caught up with me and I have to admit that unless I quit my job and miraculously win the lottery I never play – plus also got Bernard’s watch out of the 90s children’s show prop closet that time forgot – I am never going to get close to completing those 101 challenges I ambitiously drew up in my morphine fogged  weeks after surgery.

Why I thought 101 was the best number and not 30, or 15, or even 5, God only knows, but I know for a fact i never expected to have another lot of surgery that would take so many more months away from my plans – my only excuse is I must have been high as a kite.

So I’m not going to be able to do 101 challenges, I’m upset about that but also somewhat relived. I am going to be able to do some of them, but I’m not going to promise which as I’m starting to think my promises can’t be relied on any more.

But one thing I can tell you is that I want to keep on blogging and that I am back, I can almost hear a little groan of exasperation from the other side of the computer.

A little tired, a little bit older and a little bit more weird than before, but I am back and determined to be a blogger again.

Being on the other side of the hospital curtain – the worry of being a relative


I’m sorry I’ve not blogged for a few weeks.

For the past couple of weeks I’ve been seeing things from the other side, my sister has been quite ill. I won’t go into details as it is her business, and while I’m very honest and open about my own condition it wouldn’t be fair to talk about her.

All my life I’ve been the ill one, the one everyone worries about, is sent cards and flowers, the one taking phone calls in hospital beds – it has rarely been the other way around.

But in the last few weeks my sister (who often has coughs and colds but nothing drastic) has been really ill, so much so she needed to go into hospital and have an operation.

It frightened the shit out of me to be honest with you. (sorry for swearing)

It was weird hearing her drugged up on medication, talking to her knowing she was propped up on a hospital bed hooked up to machines, and going through the horrid nil-by-mouth all I want to do is sleep period.

I suddenly went from the one everyone worried about, waited to hear from, tried to entertain when bored, to the worrier and the one trying desperately hard to entertain even though I had no clue what to say.

And it turned out I was rubbish at it and felt totally helpless….I may as well have been on the other side of the world for all the good I did, thank god my parents were there.

Basically the tables turned and I got to experience what my sister has had to cope with during all my years of illness (and my mum and my dad, and my boyfriends over the years).

And I have to say it was a horrible eye opener.

When you are in hospital it is an awful experience: it doesn’t matter how good the care is, how kind and compassionate the nurses and doctors are, or how much people bring you to do, it’s bloody horrible and you’d rather be anywhere else.

I was always so envious of everyone else being able to work, leave, work, eat what they want, work, use real soap and be able to wash their hands with anti-bac and then leave the hospital ward to go home to  TV, a hot meal and their own bed. I guess I don’t really think I appreciated that when my folks left after visiting time they took the worrying with them and probably only got the same amount as sleep as I did through panicking about me all night.

While you’re there you know your family are going sick with worry, are trying their best to help and are going through it with you – but I guess I didn’t appreciate just how stomach churning worrying it was until Hannah was admitted to hospital.

Even though I knew there was nothing at all I could do and that she was in the best place, in safe hands etc, I suddenly felt really far away, like I needed to be there, but I couldn’t be.

Luckily my sister is home now, which couldn’t make me more happy. Having been in her shoes  I know how nice it is to get back to your own bed, food and teddy bears!

Her being ill has made me realise a few things, one is that I need to be less selfish.

When I first rang my mum when my sister told me she was in hospital she told me I needed to take care of myself as I couldn’t be ill to.

She’s right I need to start taking care of myself not just for me, but for my family, my boyfriend, my career and my life.

How I am affects everyone around me, but it takes its toll mostly on my family. I don’t want the first thing that pops into their head when they get a couple of calls off me to be ‘is she in hospital, is she ill’ – I want it to be what amazing news has she got, has she won and award, is she engaged?

 

I want my family to be able to rely on me not worry about me. So for everyone’s sake its time to start sorting myself out….I am well now so I shouldn’t still be thought of as the sick one and I don’t want to be thought of that for the rest of my life.

If my sister or my mum, or my dad get sick I want them to be able to rely on me, not worry that I’m too busy or fragile to deal with it. It’s time for me to start getting my priorities, which is my family in order, which means seeing them more often, staying in touch and appreciating them more.

I don’t know how this blog ended up being all about me (which I guess proves my point down to a tee) – so I’m going to shut up.

 

 

Day 5: A battle of skin and bones: the ever changing size of IBD #7daysofIBD


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.

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!

Just a thought!