Show off your tummy for IBD #GetYourBellyOut showing Colitis Who’s BOSS

Just a few days after getting home from my recent hospitalization, lying in bed in pain from my pelvic drain,

Last year my ileostomy, fistula and wound

Last year my ileostomy, fistula and wound

restless and unable to sleep at around 2am, I was absent mindedly scrolling through my twitter feed and stumbled across an unusual tag. Curious I clicked on it and was amazed to find dozens of pictures of bellies, abdomens and stomachs of all different shapes, colours and sizes. Some had scars, some had staples, some had stomas, some had ostomies – all of them had one thing in common…yes you guessed it – all had Ulcerative Colitis or Crohn’s Disease.

The tag #GetYourBellyOut is the best campaign to raise awareness for Crohn’s and Ulcerative Colitis I’ve seen in years. Yes it was inspired by the no make up selfie twitter campaign for Cancer Research UK, but when something works that well why not adapt it and use it to promote other causes and help tens of thousands of people across the world. It’s inspired a heck of a lot of people, increased public understanding of IBD, helped raise money for Crohn’s and Colitis UK, but best of all it has given people strength and most importantly of all HOPE.

To say the pictures in this hashtag are inspiring would be an understatement. For IBD sufferers across the world they are life changing. Every single person who has taken a picture of their stomach has given hope to someone and helped the public finally understand that having Crohn’s/Colitis or/and an ostomy is nothing whatsoever to be ashamed of. In fact we are showing the world one cheeky stomach at a time that we don’t give a shit, and that we want the world to know about this illness so that more can be done to help both those suffering from IBD and all those who in the future have to go through the horrific ‘in the dark’ pre diagnosis stage, we all shudder to remember these days.

First picture of Winnie I tweeted to world

First picture of Winnie I tweeted to world

IBD is a disease which is often thought of as embarrassing, taboo and is hidden behind the toilet cubicle door. But as more celebrities come out to the press with the condition the public’s awareness is increasing, but its a slow journey to understanding. This campaign is literally pulling this disease out of the toilet stall and into the public domain. What you see is what you get – let’s not be ashamed, join together and educate the world. So I’ve added some pictures of my own abdomen to remind you of the journey my tum has been through over the past two years alone.

As you all know since I was first diagnosed I haven’t hidden my IBD from the world, in fact since I had my ileostomy operation I have become a loud and proud Ostomate. But I remember how hard it was to show my stoma the world for the first time. I remember the first post when I showed the world Winnie naked (without her bag) and raw, I remember feeling nervous and scared that people would think I was a freak, i half expected a barrage of hate on twitter from people slating the way I looked. But what I got when I posted the photo out to the world was more acceptance and love than I could have ever imagined. It was incredible. The understanding and acceptance was enough to reduce me to tears. I gained hundreds of followers within hours and my blog was shared across the world. I had heartfelt messages from people telling me how brave I was, how amazing I looked, how I had given them strength and hope, how I had made them less nervous about their ostomy, I even had celebrities retweeting the picture in the hope to spread awareness of IBD and stomas – I was surprised and overwhelmed.

This campaign is just like that all over again but on a much larger scale. I wish I’d thought of it, I’m so glad that @ColitisandMe did. The idea is beautiful. For any woman, man, child with IBD posting your abdomen online can be a horrifying notion. I mean many of us have battle scars, stomas, bags, drains, stitches, bruises from injections, weight loss, open wounds, and those that don’t often suffer from bloating and pain in that area. I understand why people think twice about letting anyone see their stomach, for years I didn’t want anyone to see mine at all and heaven help you if you tried to touch my abdomen. But scrolling through the hashtag shows that we may all different shapes, sizes and have different battle wounds but we are all beautiful and our bodies tell a story of courage, bravery, determination and hope. Every one of the pictures tells a different story; some have had surgery many times, others have lost vast amounts of weight, others look toned and perfected in the gym. But no matter how different they are our stomachs have been through a lot and we are still here and hopefully inspiring others.

my stomach before my first op - sore and scar free

my stomach before my first op – sore and scar free

I like to think of my scar as a little reminder of everything I’ve been through and I’m still going through. Next year I will get round to getting that tattoo to permanently etch my battle onto my skin. I’m proud of what I’ve coped with and managed to achieve despite my illness, and I’m hoping this social media campaign makes people feel the same way. I know some celebrities have already got on board with this campaign but I hope more do soon to spread awareness and of course raise cash for Crohn’s and Colitis UK. If this campaign helps just one person not feel alone with their illness and gives just one person hope, or educates one employer or school, then it will be a step in the right direction.

I’ve joined the hash tag and posted pictures of my stomach, scar, ostomy bag and all. So what are you waiting for, join the trend and make a difference. Come on, you could change a life forever!

To donate to the cause to raise money for Crohn’s and Colitis UK text IBDA99 & your donation to 70070 you can also follow the #GetYourBellyOut Facebook Page by clicking here. Or donate by LinkedIn here. Come on every penny helps!

Ouch skin problems last year

Ouch skin problems last year

Just before this operation - my horrible fistula which is now gone!

Just before this operation – my horrible fistula which is now gone!

This week after second op - amazing!

This week after second op – amazing!


Here’s Winnie – meet my temperamental stoma

Yesterday me and Winnie celebrated our 10-week anniversary. But, because all I remember about the day the surgeons ripped my once flat stoma open and tore my poor and battle worn colon out, is being dopey and drugged up and feeling the sort of pain and soreness that you would expect a person to feel when a major organ has been ripped out of their body, I tend to think of the day after the op as the first real day me and Winnie spent together.

So true!!!

So true!!!

A lot has happened since I woke up groggy from the massive dose of anesthetic and realised that my worst fear had finally come true – my once flat stomach had been torn apart and a giant pink stoma was now erupting from the surface. Me and Winnie have been on a lot of adventures together, faced horrible challenges, snuggled up in sweat pants with hot coco when we’ve not been feeling well, and have had some God awful ‘I hate you so much’ fallings out.

I’ve struggled to accept her need to constantly make embarrassing farmyard noises in totally inappropriate situations, while she has put up with my inability to stay away from foods that make her sick (I promise you not matter how much you hate it, I will always eat loads of spinach, even though you spit it out whole). I’ve put up with her non-stop attention seeking and ability to fill-up faster than the speed of life, while she has struggled to keep up with my stubbornness and inability to put my feet up and just rest.

We go together like Brie and Bacon

We go together like Brie and Bacon

We have had our highs and lows. Ok, more lows than highs at the moment, but just like any long-lasting relationship at first you have to learn to put up with each other. After living for 25-years with my colon, I now have had to get used to life without one of my major organs and accept Winnie as an alternative to using my arse to go to the loo 🙂 it has been a major learning curve, but one I have got used to and accepted a lot quicker than I ever thought I would.

Now that 10 weeks have passed I thought it was about time that I showed you Winnie. I mean I’ve been telling you all about her, praising her and bitching about her for the past two months, and I, very rudely, have never introduced you to her. Now to everyone who said they wouldn’t read my blog if there was anything gross in it, I apologise, but even though she sometimes (well a lot of the time) does gross things, Winnie is NOT gross…she is totally natural, and I would still be seriously ill without her. So here she is. My surgeon and stoma nurse say she is perfectly formed, and she is 🙂 n.t I’m sorry about all the scars and how yucky they look, but if I wait for them to heal without showing you Winnie we could be waiting for years!

So here you can see Winne, Oscar (who is poking out of my stomach and causing me all sorts of problems at the moment) is the one who looks a little like a second belly button or  thumb print, and Felicity the fistula. You can also see my very itchy scar from the operation, surrounding my almost non-existent belly button, which has been swamped by the itchy rashes caused by plasters, adhesives and dressings. I thought I would always hate this scar, and at the moment I do, but I know that I will grow to accept it in the end – well hopefully.

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie the very temperamental stoma, released for good behaviour for a minute or two

Winnie is pink, problematic, has a split personality disorder, and is 25mm big (which is a hell of a lot smaller than she was when she first came into this world). We have days where we hate each other, but you know what she has saved my life, and she is a small price to pay for a life without the crippling pain of Crohn’s Disease.

I didn’t show you Winnie before because I was scared to. It sounds silly now but I have been dreading this post, and even though I wouldn’t want to admit it I was putting it off. But now I have show you her I can’t understand why I was making such a big ho ha about it. So, say hi to Winnie world!

As you all know, before I was forced to have my emergency ileostomy op I was scared, well shitless, about the idea of having anyone go near me with a sharp knife to slit open my poor skin – I won’t go into how terrified I was about the idea of having a stoma, or we could be here all night! I guess I never thought I would be sat here showing the whole world a picture of her, I didn’t think I would even be able to look at her. 

And here she is looking very sore from the hot weather :( I'm sorry Winnie - not her best look

And here she is looking very sore from the hot weather 😦 I’m sorry Winnie – not her best look

Despite the fact I had narrowly avoided having the surgery many times before, in the days before my operation 10-weeks-ago I may have accepted the idea of having an ileostomy bag but, I have to admit, I was still bloody terrified about having a stoma. After drawing those little x-marks-the-spot marks on my then flat and untouched stomach, and chatting to me about sizes of bags, accessories and all the other fun things that as a fashion mad lady I would usually love to hear and chat about (not in this situation tho), my lovely stoma nurse Maria gave me a pre-ostomy reading and prep pack.

This was just two days before the surgery, so there was no backing out. The slot was booked, the surgeons prepped, and my bowel was rapidly disintigrating…so, really there was no backing out of it. So I opened the pre-op pack and started devouring the literature in an attempt to get myself ready for my new arrival. All the shiny coated booklets where filled with images of happy smily people drinking coffee and taking bike rides in the sun and they were eating all the time! I mean, what’s with all the eating? Nearly every page was filled with images of either shiny-grey-haired pensioners laughing over orange juice and croissants, or smiling families tucking into picnics on sunny lawns…all the booklets seemed to be telling me is YOU CAN EAT ANYTHING WITH AN ILEOSTOMY!! And that really wasn’t the reassuring message I needed….it all seemed really over-glossy and fake, I needed something real, a picture of someone who was just, well like me.

My stomach the night before my operation - wish i had never taken this it makes me feel sad to look at

My stomach the night before my operation – wish i had never taken this it makes me feel sad to look at

What I needed was maybe an extract from someone’s blog, the real truth about how someone my age would feel after such a major operation, you know WHARTS AND ALL! I think if I could have read something honest, someone who said they had also felt really frightened, and that it hadn’t been all plain sailing with their ostomy but that it had been worth it in the end, that would have been a great help… so if you’re reading this and you’re from one of the pharmaceutical companies please, please, please think about putting in some honest stories from young people, instead of just filling those brochures with fake, plastered on smiles which wouldn’t look out-of-place in a pension or life insurance commercial.

Me with all my gadgets - my utility belt :)

Me with all my gadgets – my utility belt 🙂

Anyway, anyway, anyway, inside this pack there was a fake stoma and a bag, so that you could basically give-it-a-go, sort of try it on before you buy kind of thing. It wasn’t an enjoyable experience but I attached the fake squigy foam stoma to my marker x, filled up the bag with water from the communal tap on the ward, and attached it to my stomach. Then, according to the booklet, I was meant to walk around with the bag attached to me for a couple of hours to get used to the feeling of wearing it all the time, but it was just too heavy and uncomfortable, and the first time I emptied it, it made me feel so emotional that I started to cry as the water gushed from my stomach. So I took it off…I just didn’t want to have to deal with it until after the operation, when I guess I wouldn’t have a choice.

Cutting all my new manuka honey bags :) thanks Charter :)

Cutting all my new manuka honey bags 🙂 thanks Charter 🙂

What was worse than that was I had realised that I didn’t think I would be able to deal with touching and changing my stoma myself. I was really worried that I wouldn’t be capable of it, that for the rest of my life a nurse or a friend would have to deal with her. This was because when I was reading the literature I couldn’t look at the picture of the stoma…to me it looked pink, gross and slimy. A bit like a willy or worm sticking grossly out of someone’s stomach..and this one was a perfectly formed, no stitches, no poop, no blood stoma, so how was I going to be able to deal with mine post surgery? I did, but that is a different story, for now I want to tell you that I put my hand over that horrible picture and wouldn’t look at it even when my nurses tried to get me to.

I even took a picture (see above) of my stomach the night before the operation. I guess it was a souvenir picture so that I could always remember what my stomach looked like before the scars and the stoma. You know, something to show the grandkids and all that. I wish I had never taken it, and have deleted it off my phone, as I was spending too much time looking at it and feeling sad.

But now, as I show you this picture I know that I am 100% fine about having a stoma. I feel fine about the idea of having Winnie for the rest of my life. I mean, if that means a life without the crippling pain of Crohns, the constant toilet visits and the inability to follow my dreams, or even nip to the shops for fear of having an accident, having a little pink lump on my stomach that occasionally farts in public is a small price to pay.