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!

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Public toilet charges in Italy– I refuse to pay €1.50 to flush away my Crohns and empty my ostomy bag


During our trip toilets had become a real issue for me. In Venice, toilet1when you finally found a WC after following a muddle of signs which had blatantly been positioned to confuse desperate tourists and their nearly wetting their pants kids, you were faced with a €1.50 fee to have a pee. For me this was an absolute slap in the face, and I stubbornly refused to pay, scrap that, I absolutely refused to pay to empty my ostomy bag. I mean why should I have to pay to sort something out which is absolutely necessary. This led to some very sticky situations, where in the middle of a very lovely day we ended up rushing around with me clutching my rapidly filling ostomy bag, tempting fate for an explosion which would have left gondola drivers gaping and loosing their hats, trying to find somewhere for me to use the bathroom.

Because of this we became criminals on the run…I like to think of us as the toilet bandits. We would go into bars and either sneak in through the crowds to use the bathrooms, or Andy would sit and look at a menu while I went to deal with Winnie before running off down the street having done the toilet equivalent of the DINE AND DASH…I suppose you could call it a PEE AND FLEE or a FLUSH AND RUSH – the possibilities are endless.

Yes I did feel sorry for the waiters and waitresses as I defied their ‘toilets are for paying customers only’ signs etc. But at the end of the day why should anyone have to pay for something that our bodies have to do naturally. If I’d decided to empty my bag on a street corner that wouldn’t have been acceptable, but if I didn’t have €1.50 would I have had a choice? Before my operation using the toilets alone would have filled the whole budget of our trip – needing the loo every five minutes – we defiantly wouldn’t have gone on a gondola ride – you do the math.

In Florence the toilet situation slightly improved as there were more free museums and we discovered a department store called Coin where the toilets were freely accessible, but we still had moments. At one point Winnie was so close to bursting I was doubling over and after rowing and getting upset (I turn into a bitch when I need the loo – rightly so I believe) and blaming Andy who was trying and failing to find us somewhere to sneak into, I decided I had no option but to try the Opera House. At first the guard insisted I had to pay the €12 entrance fee to use the facilities, but as I said medical condition and he noticed me clutching my stomach he kindly let me in to use the fanciest toilets in the world under the strict instructions I did not go anywhere else – it was so kind and restored my faith in human nature, but I do think he thought I was pregnant.

In Rome things just get worse. The only times you can truly use a toilet are when you are eating or drinking, but be warned if you want to do a WEE and FLEE then you might get caught out by the coded doors which they even have in Burger King. We soon realised the key to this was simply to stand next to a door and wait for someone else to come out, but not until Andy had endured the most disgusting and expensive shot of coffee in the world.

The queue for the toilet at the Coliseum is massive, but only for the women (as per usual), so if you’re a man, well, good for you! But they are clean, so if you need it take advantage. Also be aware that throughout Italy most of the ice cream shops and some bars don’t have loos, keep that in mind if you’re going to walk miles to indulge in ice cream and your IBD kicks off or ostomy bag fills up. A tip to be aware of is that the easiest WEE AND FLEE we did was at the Irish Bar in Rome…I was doubled over in pain from a horrid build up of blood and mucus and could hardly move by the time we got there, but the place is so big they can’t tell that you’ve done the deed and run away.

Oh and if you are lucky enough to find a free toilet in Italy, the chances are it will leave a lot to be desired. You will be lucky, as a woman, if you get even the most basic of seats to sit on…it seems the Italians don’t believe in toilet seats, or lids. It’s most bizarre and it leads to that uncomfortable hovering manoeuvre, which is pretty much impossible when dealing with IBD pain or emptying an ostomy bag. And once you have done the deed trying to work the sink will leave you baffled…some have foot pumps..it really is a different world.

I know it sounds silly but the toilet situation very nearly ruined it for me. It was something that constantly played on my mind, and I found myself looking for potential pit stops everywhere. I guess its something I can’t help after 13 years of constant diarrhoea and vomiting. If it had been six months ago it would have made the holiday unbearable, but thanks to Winnie I just about managed to get by with few sticky situations.

 

 

First run with my ostomy – my love of exercise


Talking about exercising with a stoma after putting on my running shoes for the first time since my ileostomy operation. I may have only managed 1 mile but it’s a start eh?

Also talking about how exercise helped me battle my Crohn’s/Colitis. I’m not saying its a cure, but it was therapeutic and helped me to relax and feel good about myself while my body was dealing with so much crap and basically battling to survive.

I’ll be back running half marathons and raising thousands of pounds for charities in no time right?

Bend and stretch :)

Bend and stretch 🙂

Exercise with a stoma – me & Winnie and the joys of moving and shaking


It’s official, me and Winnie (my temperamental stoma bag) are back in the saddle.

Me and a very naughty petting pony in Chester

Me and a very naughty petting pony in Chester

Ok, so before you go shielding your children’s innocent eyes from my blog post and blocking this site using parent protection, I have to make it clear that this post is not about my sex life…I’m afraid it’s much more boring than that (sorry guys), today I’m going to talk about getting on my bike and exercising despite my temperamental stoma.

So if you read my last post about my appointment at the surgeons you’ll know that I have been feeling a bit down in the dumps over the past few days. Well, if I’m going to be completely honest, that’s a bit of an understatement. The way I’ve been feeling is totally down-and-out depressed. I’ve been feeling totally confused about my body, about my disease and about my future. I’ve been feeling like everything is working against me to stop me healing and being able to embrace the normal, amazing and pain-free life, where I wouldn’t clock the toilets the moment I walked into a building, which I was promised I would have after my operation. Basically, I have still been feeling better and weller (I know still not a word) than I did before the birth of Winnie, but recently I’ve pictured myself standing in an open square, throwing my arms out and screaming “I’ve had 13 years of the godforsaken disease, pain and vomiting, give me A BREAK!!!”

Last time something stopped me running/ swimming

Last time something stopped me running/ swimming

Anyway, anyway, anyway, despite feeling like an emotional yo-yo and forcing my friends and extremely understanding boyfriend to tip-toe around me like I’m a ticking-time bomb, a few days ago I decided it was time for me to try to start to build up my muscles again and get exercising! Ok, so it’s not like for the past 12 weeks I have sat in sweat pants and stuffed my face with takeaway and chocolates (I wish), so please don’t get the impression that my longing to start exercising was triggered by some sort of lose weight fast or crazy body image issue where I see myself in the mirror as a giant whale – I have to make it clear here that I KNOW I AM TINIE TINY!! The idea to start trying to exercise again was not brought about by vanity or self-loathing, but by the itching to start moving again and the longing to feel that satisfying burn that tears through your muscles after a really tough workout is over.

Ok, so maybe I am lying a little bit about the vanity thing!

If I’m going to be honest with you (and if I’m not, what’s the point in this blog? seriously?), 70% of my idea to exercise was health related – to help get my muscles, body and bones (due to my osteoporosis) stronger, and transform my twig-like legs back to their stronger, half-marathon selves – and 30%, I have to admit, was more to do with pride.

Ok, so I know that sounds ridiculous, so let me explain. This weekend me and a group of my girlfriends are heading to Centre Parks for a couple of days of girly fun and laughter without the prying eyes of the male species (well I am sure there will be boys in the vicinity, otherwise that would be weird). This will be my first ever weekend away with my friends – EVER! I know, I’m so sad, I never went mad and took part in one of those mental booze-fuelled rampages to Ibiza in my youth. I never felt the need to get bladdered abroad, drinking out of funnels and having shots off naked bodies – I totally missed out on that one, I don’t think i was in that sort of crowd, and to be fair I don’t think my IBD would have let me go even if I’d wanted to. Instead I stuck with the family caravan trips, where we visited every historic monument in Britain, got flooded out of camp site, ate biscuits in bed and even dressed-up in bin bags in public. My childhood holiday memories are made up of me leaving my sister to drown as the tent filled with water, waking to find sheep carrying us down a very steep hill, and many many paddies that I can’t remember exactly why I threw!! Ah memories!! (At the time I didn’t appreciate those holidays enough, now I wish I had)

Anyway, where was I? The Centre Parks trip was booked months before I realised that my surgery (that I knew was going to happen) was imminent. When we booked the trip I was seriously ill but still incredibly active. Despite the crippling pain and exhausting fatigue which filled my bones I still loved nothing more than to exercise. I have always been that way. No matter how ill I get I still find the energy to get my bum off the sofa and do a bit of jumping about. In fact I find it helps my illness. Exercise makes me feel happy…it makes me feel in control when everything else is spiralling downhill at an incredibly fast rate. When I’m at my worst getting motivated can be hard, but the hardest step is getting out of the front door in between the toilet visits, once I’ve passed that hurdle and started running/swimming/cycling, I can run/swim/cycle for forever (well not forever) without letting my Crohns/Colitis cross my mind. You could say that exercising is the only time when I feel free, that I feel my illness comes second and I come first.

So, I’d been really looking forward to this trip until we had a meeting to discuss activities a few weeks ago. This is when the realisation that this was not the average relaxing holiday lounging around drinking wine or exploring monuments finally hit home. I really don’t know what I had been expecting or what I thought Centre Parks was, but I really didn’t expect that we would be spending our few days of blissful girliness zip wiring, jumping off cliffs and racing around a forest. Everyone else was really enthusiastic as my friend read out the activities, but I kept saying “oh that sounds energetic” or “not for me”…and you know what, I hated myself for it! Usually

A daring but very painful experience in the month before surgery - extremely ill but determined to enjoy myself

A daring but very painful experience in the month before surgery – extremely ill but determined to enjoy myself

I would be the first one to jump onboard with the craziness and fling myself off a rock face or something equally energetic (as long as it was certified as safe), and I hated hearing my little wining voice winging about how little I could do because of my op. Even the cycling seemed out of the question with my open wound, stoma and fistula…I left the meeting without putting my name down for any of the activities, in fact I wasn’t even sure how I was going to get around as I didn’t even know if I would be able to cycle! I went back to my flat devastated with an image of me sitting in the villa alone all day while my friends did fun-filled activities, waiting for them to get back before asking how their days had been…STUPID OPERATION!!!

But I was determined this wasn’t going to happen, I was going to have fun even if I couldn’t throw myself off a cliff or zip to my death down a ridiculously high wire. So I broached the subject with my surgeon (who I adore) and to my amazement he said I could do light exercise, just as long as I didn’t forget I had had major surgery. I mean, like I’m going to forget, I’ve got a flaming stoma bag to remind me every second of every day. I heard my heart-break into a million pieces when he said I wouldn’t be able to swim because of my open scar…I knew it was no good pleading so I just sat looking dewy-eyed and upset, hoping it would at least make him feel like the most evil person in the world. You see swimming is my most favourite thing in the entire world, I find that no matter how much stress or how much pain I’m in all my troubles float away when I get in the water and I can swim for hours on end at an absurdly rapid pace with the only thought bobbing through my mind being did I do 26 or 27 lengths…if I don’t concentrate on counting I quickly forget and have to go back to the lowest number.

swimming in the ocean - happy days pre surgery

swimming in the ocean – happy days pre surgery

But he did say I would be able to cycle. But I didn’t want to find out I couldn’t mount the damn thing in front of all my friends or get on and wobble around and fall off with my bum in the air exposing Winnie to the world. Basically I didn’t want to be humiliated. So on Monday I got on my bike for the first time in, well, forever. I have to say I was excited and petrified! The last time I got on my bike I was on a busy main road (I don’t know why we started out there DOH) and I was wobbling around all over the place. This time we went to an abandoned (well not quite abandoned sorry guy who owned Landrover I almost hit, I wasn’t sure if the look was pity or annoyance you gave me from behind the wheel), to get me used to the motion and to see if I could even get on the seat with all my bags dangling off my utility belt! I had this weird image of me getting Winnie stuck on the handlebars or her falling off as I whipped along the bumpy tarmac – obviously that didn’t happen.

Anyway, I have to say it was the most fun I have had in ages. I raced around in my little helmet and luminous jacket (yes I know it was broad daylight) like the happiest little kid in the world. In fact I think the man whose car I avoided crashing in to thought I was a child because of the massive grin on my face (if you watch vid you’ll see what I mean). It was exhausting and exhilarating, and because I enjoyed it so much we did it all again yesterday, but instead of a short ride in a derelict car park we took to the canal tow path and successfully avoided dogs, pedestrians, children and cyclists for a three-mile ride which left me shattered and feeling like I’d been sat on a sharp rock for the rest of the evening (ouch) – I didn’t however feel half as bad as Andy who ran alongside me.

Next step…light jogging, but I’m going to give it time and invest in some mega supportive underwear!!!

If you have a stoma or Crohns/Colitis and exercise and have any tips please comment below…