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!

Being home after stoma surgery – it takes some getting used to!

I’ve finally come home, but it all still feels a little bit strange. The quietness is eerie; I’ve gone from a world of bleeping machines, screaming and constant chatter, to an alien land where there can literally be no noise for hours. And when there is I can more or less control it.

I’ve been home for two days now and I still can’t really believe I’ve escaped hospital. Yesterday morning I woke up and had a scary few seconds where I didn’t know where I was. To say I was confused was an understatement. I expected to wake up to a shake from a tired looking nurse prodding me awake to test my BP and temperature, instead I woke up clutching my teddy in my beautiful butterfly decorated room to the sound of birds singing. Yes I was in pain, but it was blissful to be in my own bed and not to be forcefully woken and thrown out of bed and made to perch on an oversized chair in my nightie.

Nothing compares to being in your own bed. Out of everything I have longed for during my endless weeks in hospital over the past 13 years it has always been my bed. To me it is the symbol of freedom, comfort and security, and when I’m in a hospital bed with just a flimsy sheet to cover me at night I feel vulnerable and anxious. On the first night I got home my duvet was so heavy it almost hurt. I’m struggling to lift the weight of it and having to get my boyfriend to literally tuck me in at night, teddy and all. But once I’m under there I feel snug as a bug, safe and secure. And what’s even better I know (well hopefully) I won’t be woken in a few hours by someone screaming bloody murder or being sick or to check my vitals for the 10th time.

I’m not sleeping through the night, which is understandable when your used to being woken every couple of hours through screaming, pain and sleeping in a room full of strangers. I feel safe, apart from the cute ‘I love you balloon’ that scared me half to death by making a weird rustling sound as it scraped across the ceiling, embarrassingly I had to get Andy to come and take it into a different room. But its lovely to know my boyfriend is in the room next door and a trip to the bathroom doesn’t involve traipsing down a corridor and risking falling over rows of stinking bed pans.

Ok everything isn’t perfect. I’ve still got my drain in which is becoming a little tiresome and sore. I’m struggling to wear trousers (even my trakkies) over the tube and bag, and my scar, while extremely neat and surprisingly faint, sends spasms through my abdomen when I try to sit up and down. I’m tired, starting to feel bored and long to get my fitness back up so I can at least walk to town. But I love snuggling up on the sofa with my boyfriend, spending time with my parents and being able to sort of do what I want, without everything being scheduled by a nursing team.

But you can’t run before you can walk, and compared to my last operation my progress is staggering. Today I managed to get into the shower on my own (with the help of a little step), I’m able to eat a little more and make my own juice (it’s the little things). I’m shaky but managing steps and sitting down is starting to feel a little less someone is trying to stick a red-hot poker up my arse – which is never a pleasant feeling!

Yesterday the district nurse came. We (that’s me, mum and dad) waited around all day for her to come, before I found out my doctors hadn’t told them I was under their care. Typical. But when she finally arrived she quickly flushed my pelvic drain, changed my wound dressing – which is still slightly discharging – and, after I felt something sharp poking out of my bum, discovered two deeply embedded stitches which the hospital nurse hadn’t removed. That was a painful and humiliating experience, with the lovely nurse pretty much sticking her face up my bum and digging around in my skin for the blue rebels while I lay in a self-conscious foetal position begging for it to be over. As she yanked them out, pulling out several pubes, I clenched my teeth and tried to stay as still as possible. I have never been so relieved for something to be over!

Anyway, I’m sat in the flat waiting for my parents to arrive for another day on my step to recovery. I’m just about to tuck into my not so yummy ensure drink and start tackling my French, which I’m determined to be able to speak basic sentences by the time I return to work.

I hope everyone is well and happy and ready for Easter. My only problem now is trying to get a Mother’s Day card and gift without my mum noticing! Hard when you can’t leave the house and you’ve missed the delivery date.

Waking up in a fog of morphine – recovering from ostomy surgery for the final time?

This time last week I was coming round from a major operation. I was groggy, spaced-out, nauseous and exhausted. Shockingly (and unlike last time) I remember quite a lot of what happened in the hours after I woke up, but I still think someone could have told me they’d transplanted a donkey’s head onto my shoulders and I wouldn’t have even twitched.

Waking up following heavy anaesthesia is a bizarre experience. You can vaguely hear what’s going on and sense people fussing around you, but even if you try to come to your senses and communicate, your body and mind doesn’t give a crap and simply wants to remain in a state of tranquil ignorance. It simply refuses to respond to commands whether given by yourself or by nurses and doctors poking and prodding you in the recovery room.

Rousing in the recovery room is a daunting feeling, one that always reminds me of a scene from an alien encounter or zombie experience in a movie, where the unwilling patient is strapped down, drugged and experimented on despite being able to see the faces of their tormentors bobbing around in front of their drooping eyelids. It really is another world in there; one where tubed and wired-up patients lie in rows waiting to be roused and taken back to their wards. It is not really a place of panic, screaming or yelling, as the sedative is still too gripping for us to feel the true extent of the surgery aftermath – but a place of bleary-eyed confusion and slow responses.

During my subtotal ileostomy operation 11 months ago I don’t remember anything about the recovery room. Apparently I was drowsily chatting away to the nurses removing tubes and administering painkillers, but for all I know I told them I was the Prime Minister and owned a £2M mansion in the Maldives. I don’t remember much following that operation apart from finally waking fully alert around 10 hours later screaming in agony and realising I did in fact have an ostomy bag and a massive scar right down the middle of my once flat stomach.

This time I remember pretty much everything. I didn’t have an epidural for this operation – I point-blank refused following the massive complications last time. I guess that means I was probably in more pain following this major surgery than I would have been if I had given it a go, but I just didn’t want to take the chance again because I was frightened it would go wrong and no one would believe or listen to me again. 

Anyway I remember what happened before the dreaded op and the aftermath. On the morning of the big day I woke up after a rather restless night at 6am in order to drink an obscene amount of this pre surgical drink. I think it was 400mls, and that’s following 800mls of the vile tasting stuff the night before – no wonder I was up and down to the loo all night. I headed back to bed for a reassuring cuddle before shakily showering and arriving at the theatre admissions waiting room at 7.30am.

The theatre admissions room is full of fear. Everyone has that half-slept scared out of their minds glazed look about them. The people there were anxious, puffy eyed and exhausted. I sat in silence with my boyfriend waiting until he had to leave – apparently partners are not allowed to stay – you have to spend those agonising last few minutes/ hours alone with no one to distract or comfort you. It was hard saying goodbye to Andy: mostly because I was frightened (you never know what will happen in major surgery) but also because I just didn’t want him to leave my side. Luckily it all went very fast after he left and it was only around half an hour before I was donning a bumless gown for my big op.

Before I forget, this operation almost didn’t happen. After all the weeks of worrying and questioning my judgement I almost didn’t go under the knife last Wednesday. My surgeon was concerned about the cold I’d picked up from a flu-infested office, you know the one that was making me feel like I was going to pass out 24/7. Anyway the anaesthetist disagreed and said I was coming to the end of it so why delay? I honestly don’t know how I felt when she said it was a go; part of me longed for it to be cancelled, the other part would have been devastated to have to wait anxiously for another month for a surgical slot.

Anyway I did what I always do when I’m nervous or scared – make jokes and chatter. I was chattering away about my holiday to Venice as they administered the dose of anthestia. And this time, unlike the normal try to count backwards from 100, I was asked to talk about where I would like to travel next, so I started whittering on about how much I loved Italy but was hoping to travel to America next year….before I got far I was waking to the bustle of the recovery room.

I remember the nurse talking to me, trying to find out if I was ok, if I was in pain, if I knew my own name etc. To be honest I couldn’t tell her. I guess I was surprised I was awake so quickly, it felt like only a second had passed since I was put under – in reality it was around three hours. I remember frowning as I heard a nurse tending to me moaning she should have been on her break, before I was put back under and woke up to my partner sat next to me on Ward 44, which was both reassuring and weird in my dopey state.

More about my time in hospital and recovery tomorrow…. but for now know that I’m doing well and the only thing I regret is the sore bottom!


Surgery date looms – just over a month until my ostomy become permanent

Tomorrow I’ve got my pre assessment for my surgery and to tell you the truth I’m terrified. It’s been almost nine months since I had my first ever operation and to say last time I wasn’t worried would be lying. I avoided surgery for almost 13 years through misinformation, hope and fear, but when I realised I had no other option but having an ostomy, I didn’t look back….I grabbed the surgery with both hands knowing that anything was better than living life looking through permanent black spots of agonising pain and wanting to die.

Last time was an emergency, I was too weak to really understand what was going on. Yes I dreaded it, and yes I was afraid. The week before the operation I was frightened but I had resigned myself to a life with a permanent ostomy. I thought that was the only option, so when I woke up with a temporary ostomy I was angry. I’m still angry. Perhaps that sounds unreasonable, but I told my surgeon if there was any sign of colitis in my rectum they should remove it all once and for all – it was bad, it’s still bad and he left it in.

I know there are all sorts of reasons for that, but nine months down the line I’m not well, I wouldn’t describe myself as ill either, but I’m living with the consequences of my surgeon choosing to leave that rectal stump in. My fistula causes ripping pain through my stomach (nothing like when my colitis was bad), squirts out foul mucus and bags full of blood and leaks causing my skin to blister and bleed. I still struggle with the bathroom (but not half was much as before) and infections. And I’ve just about had enough.

But despite currently having two bags, it’s not all bad news. Since I got Winnie (Stoma) I’ve had the taste of what life could be like without a colon. Yes, there are good and bad things and it’s not been the easiest thing in the world to get used to, in fact it’s been tough and at times upsetting, but life has never been better. Most days I barely think about my ostomy, yes the same can’t be said about my fistula, but most of the time my ostomy gives me absolutely no problems. And if all it takes is for me to have that forever to have a life free from fear and pain and torment I’ll give it a go thank you very much.

I guess I’m not worried about having my ostomy made permanent, I’m frightened of the surgery, but I’m even more frightened of the recovery. Last time a lot of things went badly wrong, there were a lot of mistakes made in my aftercare and a lot of things happened which I have made an official complaint about. It’s sounds wrong but I no longer trust the hospital who treat me, I have lost confidence in their ability to help me recover. These are not unfounded fears I have kept to myself, they are based on real things that happened; my stomach bursting open; my epidural placed wrongly causing my leg to feel paralysed; being given milk for breakfast constantly despite being lactose intolerant; food going missing; pain killers not being administered; being left in dirty clothes – the list goes on.

So I’m frightened. I know I have to have this operation if I want to get on with my life. Despite everything I still trust my surgeon with my life. I know I have to face the surgeons if I want a life free from colitis. I just hope I have the strength to do it.