Why I’m proud of my surgery scar a lasting reminder of my battle with IBD

There are a lot of things I would change about myself if I had the chance.

My wonky (some might say quirky) teeth, flyaway eyebrows and weird hairline would be top of my list.

But I wouldn’t get rid of my scars or my ostomy.

Winnie (my stoma) certainly picks her moments to have strops – the most noteworthy was bursting into farts as I interviewed David Cameron for the first time a few weeks ago.

The Prime Minister may have chosen not to comment or simply didn’t hear her popping away – but I had to struggle on with my hand desperately pressing my abdomen as she made frankly hilarious noises which would normally have had me laughing and apologising.

But despite this I wouldn’t get rid of her, mostly because I can’t.

My ostomy and my scars tell a story; from the slit in my nose marking the place the feeding tube went in as a premature baby, to the pits on my legs showing an ugly reminder of a tough time when I thought I would never show my legs again.

I often thought before my ostomy surgery that I would hate my surgery scar, that it would turn me into something repulsive.

I remember seeing it for the first time after my operation, oozing and sore, and like a war wound bound up with metal and wire – and I couldn’t cope.

But now that scar that snakes down past my belly button to my pelvis seems almost beautiful to me – it reminds me of a journey completed and a battle won.

I’ve thought about getting some sort of tattoo around my scar (not the one on my nose), not to hide it but to make it prettier, but for now I’ve decided to let it be.

So this summer I’m determined to finally get my belly out on the beach for the first time and I’m going to have a good look for a bikini to show off my figure, ostomy bag, scar and all.

And as it was World IBD day this week I thought there would be no harm in letting you all see how I’m getting on with a few selfies of how me, my scar and Winnie are looking these days.

My ostomy may be looking a little red and sore, she might fart at the most stupid moments, but two years on from my first lot of surgery I wouldn’t get rid of her for the world.

She is the most significant thing that ever happened to me – and that’s a fact.


I can’t fart! – five things you might not know about having an ostomy this #worldostomyday

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.1157678_231106760373116_263656469_n

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.

Crohns and shared houses – poop, farts, pain, and one toilet between 12.

So we are finally doing it, after months and months of shuttling backwards and forwardstoilet

from the city to the countryside me and my boyfriend of almost two years are moving in together. There are no excuses any more. I am on the mend from my operation, and now that I’ve had my ostomy operation the fears I had about living with other people (what if there in the toilet when I’m almost collapsing with desperation to go, and have an accident while waiting) are slowly fading. Now is the time to bite the bullet, combine our CD collections (sorry I mean iTunes accounts) and join the co-habitation trend that most of our friends appear to be falling into at a surprisingly alarming rate.

Over the years I have lived in a lot of shared houses, and I like to think that the experiences I have encountered from those sometimes horrific living arrangements have added to my character and made me the person I am today. For better or for worse. These houses of baked beans splattered on walls, endless mountains of washing up, dead mice in washing machines (truth) and lying in bed hoping that the terrifying, possible mass murderer that you live with, is not lurking in a cupboard waiting to pounce on you with a kitchen knife, have formed part of my journey into adulthood. They have forced me to learn how to use the washing machine, put up with other people’s minging and disgusting habits, and truly made me appreciate my own space.

Now that I live in my own flat I often wonder how I managed to live in shared houses with my Crohn’s/colitis. How did I cope during flare ups and during the long nights when parties were happening and I was too ill to even move? The answer is that I didn’t cope, I pretended that I did but I just got iller and iller every day that went by and living in a shared house was as bad for my illness as forgetting to take my meds for days on end. There were nights when I would be so exhausted it hurt, were the hours of pain and constant diarrhea had stripped my body of all its fight and every ounce of strength, but the pounding music in the room above just wouldn’t stop. I would lie in bed for hours and hours staring into the darkness willing them to go to sleep, willing for the uninvited guests to leave our house, so that I could finally get to sleep.

Whenever there were parties and I was having a flare it meant that I couldn’t, wouldn’t l

Roll - this is not my image but ARGH i feel their pain

Roll – this is not my image but ARGH i feel their pain

eave my room to go to the toilet no matter how bad the pain got. As the music boomed in the living room or upstairs I would lie on my bed curled up in a ball, huddled up as pain convulsed through my body while I gripped my teddy bear so tight my fingers paled white. Sometimes I even bit down on a pillow to stop myself screaming out in agony and terror that this would be the last thing I would ever do. Sometimes I even had accidents, often I passed out from the pain, but having only one toilet meant that going upstairs to sort myself out wasn’t an option, my disease just made it too embarrassing, oh and the fact that there was no lock on the toilet door didn’t help either.

Sharing one toilet between three is bad, between four is a nightmare, and between five is unbearable, and I’m sure that goes for anyone, but for someone with IBD (Crohns/Colitis) sharing a bathroom with even one person is problematic enough let alone a group. For me this was a constant worry. Even when I didn’t need the toilet I worried about having to go. It became something I would have mini panic attacks about…if I saw one of my housemates go up to use the loo I would instantly start to get warm and my heart would start beating faster, this intensified to the point were I thought I was going to have a heart attack if someone got in the shower or decided to have a bath. There were constant fears, what if I needed it while they were in the loo, how long would they be in the shower, what if I had an accident? It plagued my every thought, my every minute of living in a shared house over the years has been filled with anxiety. I constantly lived in fear of everything, from running out of toilet roll to my housemates finding blood splattered along the rim of the bowl, to people banging on the door to get in when I’m stuck in one of my 15 minute sessions of non-stop pain were my organs felt like they were falling out of my backside.

I was so terrified about running out of toilet roll I had an endless supply in my room. I decided to do this, well my mum did, after a truly horrible day when a housemate invited loads of friends round, naturally without warning or asking permission from anyone else. Normally five people shared the bathroom, when partners stayed over that became eight, but on that day with his extra mates we had 14 people to the one toilet.   We may as well have had an army staying with us, and the number of people combined with the copious amounts of spicy curry and beer they consumed that night meant that in the morning when I almost crawled up the stairs to the toilet due to the crippling pain ripping through my abdomen, the bathroom looked like a bomb site. I won’t go into detail but it looked like pigs had lived in it…needless to say it is a sight I will never forget. I had only bought a new pack of 12 toilet rolls the day before, but when I got to the bathroom there was not one scrap of paper in site. The bathroom was littered with so many cardboard tubes I could happily have made a Blue Peter Tracey Island (or something similar) but there was no loo roll. It was my worse nightmare. I was desperate to go, I was in absolute agony and knew that if I didn’t go soon I would pass out on the floor face down in something indescribable. To top it all off the dick who had used the last roll had left it on the holder with just a slither of paper in a ‘screw you’ kind of way…I HATE THAT.

What did I do? It was a moment of pure desperation, I have no choice and looking back I’m not ashamed of what I did, it was necessary, but it was definitely a low point in my illness. I’m sure you can imagine what I did so I won’t spell it out, but to avoid this shameful situation in the future I now always have a cupboard full of rolls, wet wipes and a handbag full of tissues.

Anyway I’m rambling, I’ll split this into two posts, more on shared houses and IBD next time.

Coping with a NG tube – guest blog as me & Winnie get 10,000 views

I can’t believe it but after just a few months me and Winnie have had 10,000 views on our blog.

I know this doesn’t mean that 10,000 separate people have read about my crazy mishaps and adventures with my temperamental ostomy, but I am honestly amazed that so many people have clicked on the different posts and read about my life.

When I first started this blog I didn’t think anyone would read it, apart from maybe my mum. I just wanted to help others who suffer from Crohn’s or Colitis (or any other kind of chronic condition) not to feel alone, and to show the world that having an ostomy bag is not disgusting, taboo, or something to be ashamed of, and that it most definitely isn’t the end of youth, fun and freedom – in fact after more than a decade of a life ruled by IBD having my operation has meant just the opposite.

Sharing these experiences with you guys has been eye-opening, fun and sometimes extremely emotional. At times sharing my story, pain and mishaps has been upsetting, but just the act of putting these feelings and problems out into the unknown for everyone to see has been sort of therapeutic. The responses I have got have been incredible. After years of being terrified about what the world would think of me if I had a stoma, me and Winnie have been welcomed with open arms into a community of brave, understanding and generous people, and thousands of strangers have accepted Winnie, despite all her poop, inappropriate farts and nuclear explosions.

I want to thank you all for sticking with me through all this craziness. Sometimes I’m incredibly bubbly and positive, other times these posts can portray the side to my life were the illness rules me and I just feel like a miserable wreck. I just wanted my experiences to help one person, and I thought if that happened the, at times, hellish journey I have been through would all be worth while. It’s safe to say I didn’t think anyone would read this, and I am blown away that so many of you have.

Anyway, now that I have got past this milestone I have decided to share someone else’s story on my blog.

I found Kate on twitter and was inspired by her positive attitude despite being relatively newly diagnosed with Crohn’s Disease, (and of course that she shares the same name as a certain princess) and at the time having to go through the trauma of wearing an NG tube. I guess I was inspired by how open she was being about the condition as I remember how I tried to hide mine out of embarrassment, so much so that I almost died from the shame. I’m lucky enough to say that, although I have had tubes shoved in places even aliens wouldn’t probe, I have never had an NG tube, (I avoided it by the skin of my teeth once!) and although I know I would put up with it I don’t think I would handle it anywhere near as classily as Kate. 

Hi, my name is Kate Middleton, I am 17-years-old from Liverpool. I was diagnosed with Crohn’s disease in November 2012.

Kate out and about with her NG tube

Kate out and about with her NG tube

I am going to tell you my top three tips for if you ever need for an NG (nasogastric tube).

  1.  Don’t hide away.

You are still you even with a tube in your nose. Live your life as if you never had it, you will start going mad looking at the same four walls otherwise

2. Ignore some people.

Most people will look then carry on with their own business but there are some people who will keep staring. Just let it go over your head and forget about them, they don’t know why you have it. Easier said than done I know.

3. Stock up!

Fill your house up with boiled sweets, ice lollies and fruit tea, this is more if you can’t eat while on NG feed but it just gives you a nice taste.

You can read more about Kate’s experiences with IBD at her blog: crohnsgirlblog.wordpress.com


(If you want to share you story, tips or any experiences please get in touch, it would be great if I could feature one guest blog a month to help spread awareness about how no two people are effected by IBD or cope with their stomas in the same way)

Overwhelmed by your acceptance

Before I tell you about mine & Winnie’s ‘big weekend of adventure’ searching for Banksy’s famous street art and almost collapsing in the weirdly sweltering heat while lost in Bristol (yes Andy, we were lost!!), I want to say a massive heartfelt THANK YOU to all of you!

Me & Winnie at Gay Pride in Bristol - just a little bit burnt

Me & Winnie at Gay Pride in Bristol – just a little bit burnt

Four days have passed since I revealed Winnie in all her naked glory to the world, and I have been bombarded with tweets, Facebook messages and comments from people all over the world thanking me for sharing her.

For years I dreaded the idea of having a stoma. In my mind the birth of Winnie meant I would have to live the rest of my life trying to hide the pink lump on my stomach, covering her up with baggy jumpers and bin-bag style shapeless outfits. I thought I would be living the rest of my life in shame. People would point and stare at the shape of my bulging ostomy bag under my clothes, and I would be labelled a freak, disgusting, minging or dirty.  I thought that it wouldn’t matter what I wore, where I went, what I tried to do with my life or who I tried to confide in, no one would ever look at me as a normal 25-year-old woman again (not that I have ever been normal #lol).

Hope you can read back to front

Hope you can read back to front

I guess I thought that once I had my operation I would just be that girl with the bag of poo on her stomach. I guess I believed that my stoma would define me, just as my Crohns had done in the past.

For example:

Last year I was out celebrating a friend’s birthday. We were having a lovely night, chatting, drinking wine and gossiping at her gorgeous flat before heading out on the town. I was feeling ill, but wanted to have fun and ended up talking to one of her friends (who was a medical professional) about my Crohns/Colitis. She seemed understanding, and asked all kinds of questions, which I happily answered. Everything was ok until a couple of glasses of wine later (I only had one or two, she might have had bottles), when we were dancing in a packed bar and she yelled ‘OY CROHNS’ across the dance floor at me.

Looking back I wish I had gone up to her and said something witty and cutting in response. If my friend had heard she probably would have slapped her in the face. But at the time I was totally shocked into silence. She had called me by the name of my illness..it was like I had been slapped in the face! Needless to say I headed home soon after the ‘incident’ and have never spoken to that rude and nasty individual again!!

So after all my years of worrying about the world not accepting my stoma – or even me coping with living with my stoma – words cannot describe how it has felt to receive so many messages of support from fellow IBD sufferers and ostomates from all over the world. I am honestly speechless (and if you know me that doesn’t happen often). I have been called an ‘inspiration’, ‘brave’, ‘positive’, ‘sunny’, and Winnie has been described as ‘beautiful’ and ‘perfect’. I have never been one to take compliments easily, and I have certainly never been called an inspiration before, so I was shocked and overwhelmed as the comments came pouring in via twitter, and my voice even started to quiver with emotion as I read them out to Andy while he was driving us to Bristol for one of my more arty challenges. 

When the tweets came rushing in I was half expecting a flurry of negativity. I thought I was about to be bombarded with 140 characters of hate and disgust, telling me that I was ‘minging’, ‘revolting’ had a ‘penis on my stomach’ or ‘poop coming out of my side’. But instead I watched as you all embraced Winnie for all her naked, pink, slipperiness, and welcomed her into the world with a massive ‘hi, lovely to finally meet you’! I waited for a long time for that message of hate and, guess what, I’m still waiting!

There are no words

There are no words

I hope that showing you Winnie naked and revealing the bare truth about life with a stoma will help the world to understand what living with an ostomy is like. Your messages have truly touched me, and if just one person out there is able to see past their preconceptions about what life with a stoma is like; see past their crippling fear of living with an ostomy; or even gain a little understanding of what a life-changing operation this really is, then showing Winnie to the world will all have been worthwhile.

You have all made me feel so accepted, so welcome, and so natural. It has been a feeling that I have wanted for so long – don’t get me wrong many people in my life have accepted my Crohns and my ostomy, my family, friends and boyfriend have been amazing about it – but I have never felt this accepted for who I really am in my entire life. With Winnie I feel weller (i know its not a word) than I have ever done in my life – she makes me feel fitter, happier, freer, stronger and more independent than I could ever have imagined. But now I feel a part of something bigger, something tightly woven and strong. I feel like I have been given a massive pat on the back or hug from the world, told I am ok, and welcomed with open arms into a new world of understanding, acceptance and hope.

You guys and the giant marshmallow have made me soooo happy

You guys and the giant marshmallow have made me soooo happy

I may still come out of the toilet with my skirt tucked in the back of my knickers (happened at weekend and flashed special ostomy pants to everyone in Starbucks), she might make farting noises during meetings, meals and intimate moments, and I might still nap like an old lady in the middle of the day, but you have accepted me and my stoma without raising a disgusted eyebrow or questioning our cuts and chainsaw scars – and that’s more than I could ever have hoped or dared to dream of!

Anyway, because this is a little long I won’t tell you about me, Winnie & Andy’s big adventure in Bristol today, I will save that until tomorrow, but for now I will leave you with a taster of what’s to come….