I am MORE than IBD – I am a PERSON, yes I have an ostomy bag so what? #WorldIBDday


Today is World IBD Day. This morning more than FIVE MILLION PEOPLE woke up with Crohn’s or Ulcerative Colitis. Can you imagine that? Can you comprehend that many men, women and children living in pain, running to the bathroom, dealing with blood loss, fatigue, weight-loss, skin problems, and constantly battling to stay alive? I live with Ulcerative Colitis every day and even I can’t get my head around that number!

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IF you crossed one of those five million people in the street, at the supermarket, or queuing to pay for a lottery ticket would you know they were ill? If they asked for your help would you give it? If they wanted to go in front of you in the queue for the ladies loo at a bar would you let them? Would you be understanding if you saw someone who looked perfectly fit and healthy using a disabled loo? Would you judge them, would you put it down to period pains, stomach ache or a bad curry if you saw someone racing to the toilet at work with constant bouts of diarrhea? Would you humiliate them, call them anorexic or criticise their diet? Would you play practical jokes on them; use all the toilet rolls to teepee a nearby house, bitch about their size, tell them to get a good feed, criticise their frequent toilet breaks at work, call them names and point at their injection bruises, or call them antisocial for not coming to meals out or going out drinking

OR would you respect them for living with the constant battle against an incurable illness? See the bravery behind the disease, look beneath the pain and see the courage, determination and downright stubbornness to survive?

I was just 13 when I almost died from shame. I decided I would rather die than talk about my symptoms. I allowed people to watch me turn into a living skeleton, coping with agonising pain, living every second in fear, constant agony and wanting to die rather than keep living with the pain. I almost got my wish. Why? Because I didn’t want to be called a freak. I was pooing out my entire body weight, rushing to the toilet around 50 times a day, passing out, clawing at the cubicle walls and stuffing my school blazer in my mouth to stop myself screaming out in pain. But I didn’t get help because I didn’t want to be judged. All my life I’d been bullied, I didn’t want them to have poo freak to add to their name calling list.

YOUS can see a story I did in the Evening Chronicle about my illness here

People can be cruel. I know the things I’ve listed above seem a little extreme, but I know they happen because I’ve seen it. I’ve had fingers pointed at me. I’ve had the names, the insults thrown in my face while I’m almost collapsing from pain and dehydration. I’ve felt the slap of the dreaded A word when I’ve lost all my weight and supposed friends bitch behind my back as I rush to the loo, calling me bulimic and whispering about my skeletal frame and inability to hold food down. I’ve had old ladies shout at me for using disabled toilets in train stations, when my ostomy bag is about to explode, and been told to stand up on trains when I’m about to collapse.

It’s bad enough having to deal with the accidents. With the reality of sometimes being so desperate you lose control, or have to go through the humiliating procedures and undignified bed baths (etc). All those things are hard enough without having to deal with other people’s judgements, we are often giving ourselves a hard enough time.

Even now, 13 years after I first felt the pain I live with every day – first saw the bright red blood and passed out in the toilet cubicle – I’m still left reeling from people’s ill-informed judgements. I don’t show it but I’m horrified when people call me anorexic to my face. I’m a stubborn old goat, but it still brings a tear to my eye, and reminds me of some pretty dark times in the PE changing rooms at high school. How dare they? And what if I was? It is a serious mental illness after all and not something gossips should use as an insult.

People bitch and gossip, of course they do. I like a good gossip as much as anyone, and I’m sure I’ve been a Queen Bitch at times, and upset people in the process. But 13 years is a long time to live with nasty comments behind your back, little snipes about the smell of the toilet you’ve just been in, digs at your weight, pokes at the quality of your work, there is no wonder depression often goes hand in hand with IBD.

Oh and that’s not to mention the people who think you’ve brought it on yourself. I can’t count the number of times people have told me to change my diet, stop drinking, cut down on exercising, have a good feed – oh, and the best one GIVE UP WORK! It seems everyone is an expert when it comes to other people’s illnesses. They might want to help (some genuinely do) but at the end of the day most don’t really want to find out more about IBD, they just want to put their two pennies in.

But it’s not all their fault. IBD is an invisible illness. Looking at me today you would probably think I have an eating disorder not a chronic illness. If you passed me in the street you might not even think I was any different to anyone else. I look thin, tired, but fairly normal. I’m not holding onto the walls for support, I’ve not got drips hanging out of my arms (most of the time), I’m not in a wheelchair or being supported by a carer, and I’m most definitely not obese. At the end of the day, despite more than five million people living with IBD all over the world, many people still have no idea what it is. And out of the few that do, there is still this preconception that Crohn’s and Colitis sufferers are just people who need to go to the loo a lot. 

There is so much more to it than that. IBD is not IBS. It doesn’t go away if we change our diets (it can help some people); it won’t go away if we take Imodium, cut out booze, stop eating curry. Many IBD sufferers end up reliant on a toxic mixture of drugs to keep the illness at bay – including Immunosuppressant drugs which do exactly what they say on the tin – and some (me included) on chemotherapy. Many have to have surgery in their lifetime, either to get rid of blockages or strictures, or to remove large parts of their colon.

And that’s where I’m at this WORLD IBD DAY. At 26-years-old I’m a loud and proud OSTOMATE. Me and my stoma Winnie have been attached at the abdomen for just over a year and I’ve never felt better. Two months ago I had her made permanent during a serious operation which left me without a rectum. I now have an ostomy bag, something I never thought I would be able to cope with, but you know what I’m fine. In fact I’m more than fine, I’m alive, and without it I would be a living shell, probably too ill to leave the house.

I would be lying if I said I don’t wish I could have my old, flat stomach back, but it’s not going to happen. Me and Winnie are going to be together forever. I still go to the toilet, just in a different way to other people. I’ve got used to it, I’ve accepted it, I wish other people would do the same.

I am not just an illness, please don’t label me, I am a person not a disease. IBD does not define me, I define me! People with IBD are some of the bravest and most determined people I have ever met. I mean you only have to look at Sir Steve Redgrave to know we don’t let our illness stop us doing anything!!!

PLEASE LEARN MORE ABOUT IBD THIS #WORLDIBDDAY BY CLICKING HERE AND LEARNING ABOUT CROHN’S AND ULCERATIVE COLITIS!!!!

 

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Just how well am I allowed to expect to be? Never 100% it seems – it’s time to say ostomy or not I need help


I’ve just about had enough, life just isn’t what it was straight after my operation. Over the past week I’ve just simply not felt like Imagetalking about anything fun, happy or colourful. I’ve continued to put on a brave face and smile, but the truth is I don’t really feel like smiling. It could be because of the cold dark nights, it could be going into work while its still dark and arriving home in the depths of blackness, living like a vampire and never seeing the sun, it could be a whole number of things – but it isn’t I’ve just had enough of getting the rough end of the deal.

This week and last I haven’t been feeling happy with the straw I’ve drawn. After 13 years I’ve served my sentence and now I’ve had enough. I’m not happy with my health since my operation. It’s not the miracle cure for my Crohn’s/Colitis that I’d hoped, it was for a few months like living a brand new life, but now it’s not.

Ok, so maybe this has something to do with spending the last week in the most unbearable pain since my operation after developing a very freakishly large abscess in a very unfortunate place (I don’t think I need to elaborate). After the amazing weekend in Newcastle falling back in love with swimming all over again and feeling back to my old self – less the agonising pain – I suddenly (in the space of hours) developed this lump, which grotesquely gained a life of its own and grew and grew to the size of a golf ball. The result was that come Monday night I was in unbearable pain…unable to walk, sit down or lie down without emitting a squeak like a dying mouse caught in a trap. And by Tuesday I struggled to sit at work perched on the end of my seat waiting for 3 o’clock for an emergency appointment with the IBD nurse who took one look at it and went “oh Rachel that’s painful to look at” declared it was probably only curable by operation before getting a doctor to poke at it till my eyes streamed and prescribed my with very powerful antibiotics (you know the type you are so forbidden to drink with they even write it on the outside of the package).

Anyway it drained bucket loads of bloody stuff and I spent three days in bed sleeping like there was no tomorrow. Oh and throwing up – great, thanks Crohns/Colitis.

At the follow-up appointment a doctor I’ve never met had another good poke – I wished at that point I’d had a bikini wax, strange what goes through your head at these moments – I often think of the oven being on, etc. Anyway she decided I’m officially ill. FINALLY. She also decided that I should have my operation as soon as possible to remove the rest of my bowel  something although I wouldn’t like to admit it almost reduced me to tears at the prospect of missing my Mirror placement, awards ceremony, Christmas parties and playing hopefully in snow – also the idea of being stuck at home for another four months just makes me want to die…haven’t I had enough for now?? Isn’t it time to live for a bit, to enjoy life?

But don’t I want to have it removed and be well, I mean truly well?

I never wanted this rubbish illness (I mean who does?) but since the operation it seems just mean that I’m still having many days where my life is ruled by bathrooms, blood, guts and pain. I keep hearing myself say to people “well i’m loads better than I was, I’ve never been more well in my life”, I keep hearing myself say to doctors, surgeons nurses  “I don’t want to complain I don’t feel great – but, I still feel loads better than I was”.

Why do I keep doing that? There’s really no wonder there doing nothing about my rapidly declining health when I keep saying I feel “loads better” but a little ill…I’m making it sound like I’ve got a common cold not an incurable illness. They’re probably thing that I put up with it before for a whole 13 years, so if I’m better than ever I can no doubt put up with a little NIGGLE for a little while longer – and no doubt I can if forced to – but how long is a little longer? A month? A year – A LIFETIME I’m guessing!

Anyway after 13 years of this hell and finally going under the knife why should I not expect to feel awesome, I mean like jumping out of an aeroplane awesome, running through a field wind in my hair awesome? I had a few blessed months of feeling weak but incredible, then I made a load of energetic plans but now I’m struggling to even imagine doing anything but the reading challenges.

I’m not happy with how my body is at the moment – there I said it (that wasn’t that hard). That’s the truth and it’s got nothing to do with my ostomy bag, in fact if it was just Winnie I would go running through the streets flashing her shouting SUPER WINNIE (no I wouldn’t for fear of all sorts of consequences, one of which would be a passing pigeon pecking at her) and showing her off as the most amazing piece of medical genius ever invented. No it’s all the other things that are currently going wrong:

A lovely day at the end of a very miserable week - I live for moments like this

A lovely day at the end of a very miserable week – I live for moments like this

1) my mucus fistula which seems to be getting bigger and even more like a second stoma every day. Honestly its a massive pain in the gut (metaphorically and literally). Felicity is both painful in her spur of the moment movements and dramatic. Basically like a messy child when my fistula erupts she never stays contained, she hardly ever aims into the bag, but more around it causing insane damage to my poor still not fully healed skin and creating a considerable and inconvenient mess.

It’s as if she knows that I don’t want her there. You see unlike Winnie I never wanted her, she was a horrible and unexpected consequence I never expected, like those bloody annoying people who unexpectedly turn up for tea when you don’t have enough food and never told you they had allergies and expect to be fed. My fistula basically came to the party without any beer and drank a whole crate.

2) the never-ending need to use the loo – I remember straight after my op when I went to the toilet for the first time I thought “what the hell my bowel isn’t connected to anything, how can I still do this?” – an excellent question I must say. Now it’s six months later and the urgency is still there and I still find myself having accidents and racing around to find the nearest M&S to use the loos – hmm not what I signed up for.

3) the unexpected abscess – urgh comes hand in hand with my illness it seems.

4) feeling depressed – comes hand in hand with my illness it seems.

5) my joints – the cold weather drawing in is playing havoc and some days holding a pen/ putting on my coat with my hands and shoulders seems a true challenge. Nothing seems to be getting rid of this agonising problem – and I don’t think anything will, but never mind it’s a small problem in a large goldfish at the moment.

I just want to be ok, is that too much to ask? it would seem with IBD it is, and I’m guess I’m used to that and I can put up with that. It’s moments like tonight when really looking forward to swimming and suddenly realising as I remove my tights that fistula has soaked me though with blood…God knows how long I was like that for too. So I had a break-down and got re-dressed and ran out. Bloody drama Queen!

A little moment of calm - no leak!!!

A little moment of calm – no leak!!!

I had been feeling a little better too after a stunning Autumn walk in Lymm on Sunday with Andy, kicking the fallen leaves and dancing around in my new furry hat and running away from crazy muddy dogs determined to leave their print on my new cream coat. But that swimming moment has brought me crashing down into a world of negative feeling sorry for my self yet again.

I only wanted to feel like me again. Which, I’m sure once these antibiotics are gone and the docs have stopped shoving tubes up and down various places aliens would probe I will.

I just need some help getting back to that place….help!

First swim with my stoma – the best feeling in the world


This weekend I felt truly free for the first time since my hospitalization six months ago.The bizarre thing is that although I have been feeling more human than I ever have during the 13 years I have suffered from IBD, ever since my operation I haven’t felt truly myself. It hasn’t been because I’ve been mourning my large bowel, or feeling unattractive – having my bag doesn’t make me any less attractive, if anything it has given me more confidence than I’ve ever had in my life – it’s because I haven’t been able to swim.

My lovely family - fish and chips at the fish quay

My lovely family – fish and chips at the fish quay

I know that might sound ridiculous, of all the things that have happened and I haven’t been able to do since the operation – from the very start where I couldn’t walk, wash or eat properly to struggling to comprehend an intimate relationship with my ostomy bag – that I would find the inability to swim the most restricting thing. But I really have.

Before my operation it didn’t matter how much pain I was in, how much blood there was or vomiting, all I wanted to do was to swim. Nothing would stop me getting into that water, putting my head down and going hell-for-leather down the middle lane. No amount of pain, blood and guts would stop me swimming. Swimming gave me exercise, focus and a way to get rid of stress. When I swam I felt the whole world drift away, any worry from work, home, hobbies, community projects just fell off my shoulders and into the pool and my mind would be free, unable to focus on anything apart from the repetitiveness of counting the number of lengths and, sometimes, annoyingly, dodging screaming kids.

Although some people would argue intensive exercise is not good for people during a UC/Crohns flare-up…from my experience I would argue the opposite. Running, jogging, hiking and dancing have always helped to give me focus on something other than the pain, and to ease stress – usually the trigger and exasperater of my particular disease. My main problem has always been over doing it. Usually by the time I’ve stopped swimming I’m sweating, which is something that’s puzzled a lot of people – just how do you sweat under water?

Anyway, normally swimming post surgery is not a problem. Ok its advisable and necessary to wait for any open wounds to heal and to not over do exercise in the first few months after an operation, and to basically take it easy – you don’t want to suddenly decide to become Michael Phelps over night. For me it wasn’t about fear but a great bit gaping scar that just would not heal and could not be submerged in water. Even a shower caused chaos – but there was no way I was going without them.

As I told you in the previous blog entry, despite still having my fistula pumping out gunk (into a bag, no hygiene risks here) my surgeon gave me the green light to submerge myself last week. He said I would be “fine” to swim and bathe, but to be sensible. So naturally at the first opportunity I went shopping for swim suits that flatter my new figure…only to be left almost crying on Chester’s high street as I realised no where stocked nice swim suits or high-waisted bikinis in the depths of Autumn – there’s simply not the demand.

The perfect coat shopping at Fenwick's in Newcastle

The perfect coat shopping at Fenwick’s in Newcastle

I was even left disappointed by Next’s catalogue range. I’d pictured lowering myself into the glimmering waters wearing a 50s inspired high-waisted bikini or a more Victorian ask bathing suit with stripes and all that jazz – I’m so nostalgic at the moment, I blame it on Mad Men – but the two viable options in the catalogue left me feeling far from inspired. It was a shame as I had been pinning my hopes on Next after a few tweets from ostomy societies and ostomates recommending them for their fab costume range.

Anyway, despite not being able to find my dream confidence-boosting costume my boyfriend booked us both a hotel with a swimming pool for our trip to visit my sister in Newcastle for her birthday. So after a rest on Friday night following the long drive I donned my very old post surgery swimming costume and went for a morning dip. Although my swimming costume didn’t exactly flatter my new body, with the lycra clinging around my ostomy bag, it didn’t really draw attention to it either. At first I have to admit that I was very self-conscious about it, pulling a towel around my waist to hide my stomach and bag, but once I got into the water I couldn’t have cared less.

Once in it was like I was alive again. I tentatively lowered myself in terrified that my bag might float off my skin or my fistula bag would fill up with water and fall off. But once I was in I had no concerns, but trying to stop myself going mental doing hundreds of lengths and giving myself a hernia. It was tempting, I was soon back into my natural rhythm, but after 20 blissful lengths I forced myself to give in – exhausted and realising I was working muscles that, well, hadn’t been used in months.

Very hungry after my morning swim

Very hungry after my morning swim

I’ve never been happier. I went swimming again on Sunday morning, doing 30 lengths at a fantastic pace, racing in between crowds of kids and generally getting back to my own good old self. I can’t wait to go swimming again, but with everything that’s going on now I don’t think that’s going to be for a while.

A close call in court – the joys of court reporting with an ostomy and IBD


Before my operation my Crohn’s/Colitis made court reporting an almost impossibility.

Exactly!

Exactly!

I used to sit in agony in courtrooms wringing my hands together until they went white with pain under the press desk, jiggling my legs up and down to try to distract myself from the agonising need to go to the toilet – a need that never left me and always raised its ugly head at the most important moments of a case.

Covering the courts became both a joy and a punishment for me. The real challenge lay not in the reporting of the cases but the endless sitting and waiting, waiting, waiting for your case to come on. For most people the waiting would just be boring, for me it was agonising. While I was interested in the cases (if you have never sat in court and listened to mitigation and witnessed the general drama it is definitely a must – and is nothing like the telly) the constant need to race to the toilet every ten minutes made the waiting unbearable. I once dared to nip to the toilet after waiting through around three hours of driving offences, curfew amendments and restraining orders while feeling like my stomach was being ripped apart from the inside by a claw hammer. I remember racing out of the courtroom to the toilet – which is NEVER near enough to the courtroom you are in – thinking it will just be my luck if they finally hear my case now. I finally raced back to the courtroom five minutes later, still very much in the grip of the blood and pain, only to bump straight into the barristers for my case as they walked towards the Robing Room having heard the case – just typical.

Lesson learned – in the past two years I would rather have passed out than nipped to the toilet again!

Yes, I admit it the fear was always very real that I would pass out through the sheer effort of staying up right in my seat, and I am sure there were times that a jury member or even defendant has looked at me and thought ‘dear God that woman is about to collapse’. I lived in fear of an accident, and in even greater fear of someone making me move whenever a wave of pain flushed over me – when I was still I felt slightly more in control. And I am sure that all the press benches in the magistrates and crown courts that I’ve had the pleasure of sitting in have finger nail marks indented so far into the underside of the wood their imprints could almost be seen through the top.

So after years of covering court cases with the nightmare of my constantly flaring Crohn’s/Colitis, dealing with my ostomy while doing my job seemed like a reality walk in the park. Yes there was always the slight embarrassment of having my ostomy bag changing kit searched through by the security team, (and once or twice having to hand in my rounded cutting scissors at security as a ‘dangerous’ implement) but apart from that attending court was a relatively easy experience. So imagine my surprise when today my ostomy started acting up while I was sat in court patiently listening to each case and waiting for a jury to return. I won’t go into details but I could feel something was going on, and going on, and going on…and boy it just wasn’t holding back, in fact Winnie was going hell for leather. And for the life of me I couldn’t understand why.

So the next two hours were quite frankly hell. I quickly realised that Winnie was going to have to be emptied or we could end up with a pretty crazy situation in the courtroom. Basically Winnie was a ticking time bomb, and I sat sitting nervously trying to concentrate on my shorthand and what the counsel were saying to try to distract myself from the imminent explosion that was building up inside me. The pressure was unbelievable…but I was determined not to leave the room..my old fears about missing things while on the toilet returned and after grimacing through some of the worse pain of my life, there was not a chance in hell that I was going to miss the verdict because of my ostomy – yes, that is how stubborn I am.

Ok, the situation was made worse by my remaining colon continuing to contain active Colitis and me feeling the need to go all the time. The whole thing was unpleasant to say the least, and I just knew I needed to rehydrated and possibly stuff my face with marshmallows to stop this onslaught from Winnie or I would be in a whole new world of trouble soon.

The moment the judge broke for lunch was a blessed relief. I think I actually sighed audibly. As I stood up the weight of Winnie was horrendous and I had to hobble like I had bricks in my pants down the stairs, round the corner to the loo. Court toilets are never an extremely pleasant experience, but I won’t bore you with that.

By the time the day was over I had avoided several natural disasters and learnt a real lesson. While I was in agony with my IBD and the urgency and pain often led to accidents, I could often cope even though it meant me almost passing out with pain until I had a chance to reach a bathroom – with my ostomy this is not the case. There is no grin and bear it. Yes the pain is considerably less, yes the blood is there but it isn’t by the bucketload, but no I can’t stop the flow or ease the pressure when its started…if I wait, sooner or later she will fill up and then, eventually….BOOM! (now that would be a story)!

I will have to learn to cope with it. I love court reporting and I love my job, but I have to keep a close eye on things and remember I’m no superwoman, I’m still human…and, well, Winnie is just a stoma bag she’s not a miracle worker.

Meeting Olympic legend Sir Steve Redgrave – a true Ulcerative Colitis hero


Last week I met Sir Steve Redgrave. Many people know him for being an Olympic rowing legend – one of the most decorated Olympians in history, but few know that he has suffered from Ulcerative Colitis for the past 11 years.

Me and Sir Steve Redgrave - legend

Me and Sir Steve Redgrave – legend

When he first showed symptoms in 1992 he had no idea what it was. Just like all of us with IBD it came as a total shock to his body, but for him as a world-class athlete who was about to compete in the Olympics I can only imagine what that sort of pain would have done both physically and mentally. I mean if a pain like that can floor me and leave me screaming to die I wonder what it did to someone like Sir Steve, who surely was the fittest he had ever been in his life…he says he was doubled-up in pain, we’ve all been there, why didn’t he just curl up in a ball and give up?

I remember when I first found out that Sir Steve had IBD. It was when Darren Fletcher – Man United footballer – first revealed that he was going to take a break from the sport as he had been diagnosed with Ulcerative Colitis. The Daily Mail ran a story on Sir Steve Redgrave having the condition. My first reaction was, that can’t be true, that’s totally made up (and I’m a journalist!), my second thought was WOW, my third was WHAT’S YOUR EXCUSE???

I know that everyone is different. If we were to compare notes I think I would win hands down for how much my illness has effected my life…I think I would be able to say that it has stopped me doing more things, caused me more pain and caused me more humiliation in life. But from one story how do I know that? How do I know that he’s not sugar coating this illness when he says he never suffered from vomiting or uncontrollable diarrhoea…I don’t, and this isn’t a ‘who’s bowel’s the most destroyed competition’, it’s an unbelievable story, from a unbeleivable human being who has shown me that anything is possible no matter what.

It took doctors four months to diagnose his condition. Why? Because unbelievably he carried on training for the Olympics despite the crippling pain and his bowel disintegrating into a blood bath, he simply refused to stop rowing, and because of that some specialists simply refused to believe that he could have anything as debilitating as IBD – he was superhuman and they thought it had to be something else:

“One specialist had ulcerative colitis as the last thing on his list because he couldn’t believe anyone with the disease could do strenuous Olympic training, says Sir Steve in the Daily Mail article.

Sir Steve Redgrave won his third Olympic Gold medal in Barcelona, destroying the opposition with his partner Matt Pinsent – and he did it in a boat in the middle of the water with his bowel screaming with pain and probably at the back of his mind constantly that he could need the toilet at any second.

He almost didn’t get there though. He almost got pulled from the team – imagine how different our sporting history would have been then. He almost didn’t do it, but he did, he refused to let it stop him, he could have lain down and said I’m too ill, I’m not doing it, but he didn’t, he battled on. He refused to miss one training session because of his Colitis, even when he was doubled-up with pain, and because of that we have arguably the best Olympian of all time – and if that doesn’t inspire you what will?

“I told him I’m living proof that however bad it seems, there is potential to come out the other side. I hope he doesn’t feel so isolated as he may have felt before, (Sir Steve Redgrave speaking to the Mail about talking to Darren Fletcher about IBD). 

Just weeks later he had 12 pieces of his bowel removed. Before going on to become the greatest Olympian of all time, while battling Colitis and developing Diabetes – something which some doctors said was because of his IBD medication.

I don’t care who you are, where you are from, or what you do for a living, you would have to be inhuman not to find this story remarkable, not to find him an inspirational human being. So read it, it could change your life and make you realise there is a light at the end of this very dark tunnel – it did with me:

http://www.dailymail.co.uk/health/article-2076304/Steve-Redgrave-misery-colitis.html

Sir Steve Redgrave rang Darren Fletcher to offer support

Sir Steve Redgrave rang Darren Fletcher to offer support

That’s why when I saw him stood outside Chester Town Hall waiting for the full Council meeting to determine the future of the student village, of which his sporting institute – The Redgrave Institute – was a part, I just had to go and say hello. I wish I could say that I told him how much of a hero he is to me, I wish I could say that he has helped me in more ways than he will ever know, and I wish I had said so much more. But I dissolved into a bit of a wreck…I think I got starstruck – you know that thing where you are overwhelmed and just can’t say anything. Ok, so I realised in a professional capacity that it wasn’t the time or place to talk about bowel obstructions and blood, poop and tears, and it definitely wasn’t the time to start gushing and crying. So I didn’t do any of those things – just as I didn’t get my boyfriend an autograph when I met Sir Alex Ferguson at the race course when we welcomed back the troops – it would have been unprofessional and inappropriate.

But I met him, I spoke (even if my voice did come out as a little girl’s giggly whisper) and I shook his hand. I even had my picture taken with him. He could have told me to do one, but instead moments before he needed to speak in front of a packed room about something very important he stood and had his picture taken with me. And yes he was a lovely man, very friendly, very approachable and very tall.

So I met a true hero of mine. And you know what, he’s not superhuman, he’s not a robot, he’s just a really nice guy who has managed to overcome all odds to do something truly incredible. I hope I meet him again and get to tell him all of this…but you know what I think it would embarrass him – I just hope he knows how inspirational he is.

Perhaps everyone should live by this mentality, and re-reading this story I just think I will:

‘I took the view — as I always did — that whatever the difficulty, someone has got to win the gold medal. Why shouldn’t it be me?’

 

 

My first World Ostomy Day – showing my stoma six months on


So today is World Ostomy Day. This is my first one since the birth of my stoma Winnie, and she is really celebrating it!

Me and Winnie getting ready for a night out

Me and Winnie getting ready for a night out

I’ve always been open about having my ostomy bag and about what life is really like with my stoma. There is no point pretending that life without part or all of your large bowel is hard and that having a bag of poo hanging on the outside of your body doesn’t make you feel like shit. I really don’t think there is any point me sugar-coating it…I would just be lying to myself and to you guys.

Life with an ostomy bag can be, well, crap to be honest. There can be days where my bag just leaks and leaks, or my stoma stops working together. There can be nights where I am woken up 10 times as endless amounts of weird-looking food (that I seriously don’t remember eating) make their way out of the hole, filling the bag to the point of explosion. And don’t get me started on gas…no, seriously don’t get me started on it!

So, during my six months living with my ostomy I have been humiliated in hospitals and at airport security, had a few very painful experiences with sweetcorn and some

would you know I had an ostomy?

would you know I had an ostomy?

unfortunate leaks in the centre of town. I’ve also had the added problem of my mucus fistula – or second stoma. I’ve yet to find a pair of jeans that don’t cut off Winnie’s circulation, and I have moments where I look in the mirror and truly miss my old body…But would I change having an ostomy? NO…not for anything in the world!!!

Yes, I am being serious. I am proud of my ostomy, I am proud of my stoma, and I am proud to call myself an ostomate. Would I tell someone about it on a first date if I was single, I can’t honestly say that I would, but many people don’t tell potential partners about their kids for god’s sake!

The first time I showed my ostomy to the world Dr Christian Jesson retweeted it to all of his hundreds of thousands of followers and my blog went global. The support I got was unbelievable. No one said URGH or EWH – there was no hate, no disgust, just a heck of a lot of support. It was overwhelming.

Skin still a little painful 6 months on

Skin still a little painful 6 months on

So to celebrate World Ostomy Day here she is – six months on, my problematic stoma, who can be both stubborn, rebellious and down right cruel. But she also saved my life and stopped me living in constant pain. So cheers to you Winnie, and cheers to all the ostomates out there. You are brave to just comprehend the idea of having a stoma let alone putting up with the day in day out challenge of living with one. I raise my glass to you all…we made it through the surgery and we shouldn’t hide in shame…why should we, we survived and we are all stronger people for doing it. I hope you will join me by wearing your ostomy with pride today to show the world that we have nothing to be scared or ashamed of!

Ok, so I wish I’d known before today, when I saw it on twitter, that it was world ostomy day, I would have done something really special to spread awareness. But, I guess this will have to do, oh and having our house party to celebrate my surgery and Andy moving in – which wouldn’t have been possible without Winnie because of my

From the side

From the side

Crohn’s/ UC.

So, if you don’t have an ostomy that’s all it is! It’s just a little pink lump on the outside of my body – it’s not minging, it’s not gross and it’s definitely nothing to be ashamed of. It is a lifesaving and life changing operation. Yes I poo in a bag, but it’s just poo and you do it to…so what’s the problem. In fact mine is more controlled than yours!

I’m proud to be an ostomate, and although you can’t tell I have a stoma with my clothes on, I will never deny or hide that I have an ostomy. Why should I???

 

Romance in Venice – boats, rivers, towers and my dream trip on a gondola


Arriving in Venice was a bit of a whirlwind. With both our phones

ARGH THE PLAGUE

ARGH THE PLAGUE

failing to get a signal (thanks Orange, or do I mean EE – great that you are an amazing service provider but not in Italy I guess) and us having no idea where our apartment was or where we needed to meet the woman who was renting to us, we were, in theory, officially stranded.So while the other thousands of couples who arrived in arguably the ‘most romantic’ city in the world we stood staring out our supposedly ‘smart’ phones, wondering why for all the technology stuffed into these little pieces of technology – all the fancy apps, music and weird voice recognition thing that asks me to yell instructions at it if I hold down the menu button too long – neither of our iPhones was able to perform the simplest of functions – simply to ring someone.

A real movie star moment

A real movie star moment

So as we stood on the taxi bus surrounding by Italians and tourists I hardly noticed the stunning scenery and film set esk scenes passing us by due to the sheer panic that we were most probably heading in totally the wrong direction. Luckily we were and Andy managed to get another tourist (who didn’t have such as rubbish service provider) to text the landlord who finally arrived after us both attempting to us the very confusing and ancient public phones, which for all our combined qualifications and intellect which just couldn’t seem to work out how to use – we did eventually, but obviously you can’t teach common sense! If I’m going to be honest I think the landlord knew exactly were we where but decided to let us stew for a while longer – which due to my very temperamental ostomy bag I was not very happy about whatsoever.

During the whole trip I didn’t really have many real problems with my ostomy, which was surprising, I did have issues with my fistula, but I will get into that during a later post, for now lets stick to Venice.

Winnie managed to survive the plane trip, boat trip and walk to the

Money saving home made butties in the most picturesque lunch spot

Money saving home made butties in the most picturesque lunch spot

apartment (which can only be described as a disappointment, dingy and rather shockingly covered in blood splatters which I mistakenly assumed were kids crayon marks until Andy splattered a mosquito and I realised the walls were covered in blood!), and we managed to get a quick change and make it out onto the winding and picturesque streets of Venice with few issues whatsoever.

Relaxing after finally making it to the apartment and Venice

Relaxing after finally making it to the apartment and Venice

If you haven’t visited Venice you really should do it in your lifetime. It is exactly how you imagine it. It really is a living film set, exactly the way you see it on films like James Bond (you know where the house collapses into the canal) and the Tourist where stunning Senior Depp jumps across rooftops into a marketplace (well that’s all I remember anyway). I honestly would say it is one of the most beautiful cities I have ever visited, and, weirdly enough the most eerily peaceful and quiet. I think you have to go there to understand what I mean, but one minute you feel like you’re about to pass out through the density of the crowds squishing you against the walls in the piazzas and tight alleyways, then suddenly, without any warning, you turn a corner and you are totally alone – it is both frightening and beautiful at the same time. In those moments I never knew wether to scream and run in fear that a mad axe mad might chase me through the maze-like alleyways (scary movie style) or stop and just breath in the moment. If it was Manchester you would have run for your life fearing you’d stumbled into Moss Side by mistake, but for some weird reason in this foreign country where everything was alien letting you’re guard down seemed a perfectly sensible thing to do. I lived for such moments, and what’s important is we made it back without loosing any limbs in an alleyway attack!

Anyway, most of our time in Venice was filled with us randomly exploring the maze of the alleyways trying to find the real side of Venice. And we must have seen a lot of things most tourists who stick to St mark’s Square and the other main sites never get to have a glimpse of. We wandered into traditional wine bars (one we loved was right near our apartment, and very cheap for a glass of gorgeous red), stuffed our faces with icecream, pizza and pasta. Oh yes and ran away from a restaurant without paying the service charge – spending the rest of the trip looking over our shoulders frightened the police were coming after us – such criminals, but I will not pay for rude service!

Going up the tower in St Mark’s Square was an experience. Looking

Up tower in St Mark's Square

Up tower in St Mark’s Square

back now it was a very mediocre one and not one I would do again after climbing up towers in Florence, Pisa and Rome which offered far more impressive views. You could only take the lift, something I always hate doing as it gets rid of the sense of accomplishment you get arriving at the top totally out of poof, and you really did struggle to get nearer the netting to admire the views due to the sheer amount of people trying to take pictures of every inch of the city from the top.

We didn’t do Dodge’s Tower, instead choosing to take a trip to the islands. If you go I really recommend you do this. It takes half a day and you see some of the picturesque areas, where literally a handful of people live and work. Just be careful not to stand up to quick on the boat, I did, and I think my head is still spinning from the sicking crack I gave it. The islands were stunning, especially the one, and I can’t remember its name, which seemed to offer the most idilic alternative to Venice to get married. The brides I saw were glowing with happiness, and I think that would be just what I wanted if and when the time comes for me to tie-the-knot – that is serenity, beauty and that happy glow.

so  peaceful

so peaceful

One of my favourite moments was finding an icecream shop (which did dairy free for me WHOOP) and sitting with our legs dangling into the canal watching the world, gondolas and speedboats go by while reading our books. While we were sat there a sting quartet and pianist started playing orchestral tunes, including Just One Cornetto. It couldn’t be more perfect, that was cheapest night and our last night in venice.

Anyway I know you are all longing to hear about it. Yes I did it…no I didn’t get engaged if that’s what you’re thinking, but I fulfilled a lifelong dream of going on a gondola through Venice. This was one of the stoma bag lady challenges I was looking forward to the most, and it didn’t disappoint.

Yes ok it is very expensive and you can’t barter to get the price

The most magical experience of my life - the gondola

The most magical experience of my life – the gondola

down. There is a city wide blanket fixed price of 80 euros for the 40 minute trip. This is for two people. Yes, you can get it half price if you share with another couple – but where’s the romance in that, knowing our look we would have got stuck with a screaming kid or a manic depressive trying to throw themselves in off the boat every five seconds. And if you go after 7pm the price soars up – so we, as savvy customers heading out for the ride at 6pm dressed up in our finest just so that the experience would be even more romantic – I mean a lot of couples were wearing shorts and T-shirts, some even had backpacks, what’s the point in spending all that money if you’re photos are not special??

The trip was everything I hoped and more. We carefully sourced our driver…which was important as we had seen rather horrendous sites of them smoking, chatting on mobile phones and other unimaginably unromantic things while taking poor couples down the Grand Canal on their ‘romantic’ trip. Ok he didn’t sing, but he gave us a very informative guided tour as he leisurely paddled us down the tight waterways even taking us down onto the main canal to see the Bridge of Sighs and the main bridge (I forget its name).

The canal didn’t smell contrary to popular belief. Chester smells worse on a sunny day. The ride was romantic and idilic and extremely peaceful. I felt safe and secure even as the gondolas came towards each other and the drivers calmly negotiated the tight corners to try and avoid crashes which would have sent many a half asleep couple flailing into the canal.

If I hadn’t had my surgery I wouldn’t have been able to sit still for that long, that’s how bad my Crohns/Colitis had been. Instead I leaned back and breathed in the sights and sounds of one of the most beautiful cities in the world in the arms of a man who I truely love more than anything in the world. And nothing bad happened. It was a dream come true, really it was. I couldn’t have hoped for more, I just wish it had lasted longer. It was one of those unforgettable once-in-a-lifetime moments, and it will always be with me no matter what happens next.