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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A half pint of blood and mucus – my fistula’s final hurrah


Sorry I haven’t written for a while, the last couple of days have been a little chaotic both in and out of work. It has also been a tough week for my health, which always suffers at a time of stress and leaving dos – with late nights, long working hours and general stubbornness and excitement causing chaos with my colitis.

This week I’ve been in a considerable amount of pain. My fistula seems to know it’s only got a month left to torment me, so it is unleashing hell, in what can only be described as a ‘final hurrah’. I’m often surprised by how much mucus my tiny rectal stump can generate in a short space of time. On Thursday I was in agony at my desk as it pumped and squeezed. When I went to the loo to assess the damage, I understood why – in just ten minutes my tiny inflamed section of colon had produced around half a pint of blood and, well, horrible smelling goo.

Every time this happens I wonder how it manages to produce quite so much. Even now I still pass blood through my bottom end four or five times a day, and with my fistula bag (a baby ostomy bag) needing emptying at least three times, that is a heck of a lot of mucus my colitis is creating.

I can’t bear to remember how I coped when I had meters of the bloody thing! There’s no wonder I was going to the loo 20-30 plus times a day, when you look at it like that.

Right now I’m exhausted. I’ve given up on my health with the happy prospect that in a month I might, fingers crossed, never have to deal with any of this crap ever again. My eyes are bright red again (a sign of my inflammation markers shooting through the roof), my mascara has gone in the bin and my makeup brushes have been declared a “toxic zone” until I attack them with a bottle of baby shampoo later today. Yesterday I resumed the agonising eyelid hygiene treatment in a bid to get rid of the crust forming around my bright red eyes. This involves cleaning them with water as hot as you can cope with (without burning yourself), and then cleaning them again with cooled water with bicarbonate of soda in. It hurts and leaves you feeling raw – but it works.

Before my surgery when I was ill I looked ill. I would look drawn, tired, and as if I was being held up by an invisible string that might snap at any movement. Now, knowing I’ve had my surgery, I apparently look “well” most of the time. Well, that’s what people insist on telling me. It is nice to hear, but when you feel like your going to puke, your stomach is pumping out blood and your brain is yelling for you to go home and get into your pyjamas with a hot water bottle and wait for it all to be over, someone smiling and saying “you look so well”, can be hard to deal with. My response is always that I’m not 100 percent there yet but I’m a million times better than I used to be – what I want to say is “thanks, but I don’t feel well”.

It sounds silly and selfish and I’d rather someone told me I look good than “anorexic”, “skinny”, “pale” and “bloody awful” – all things I have been referred to as time and time again – but sometimes you just don’t want to hear it. In fact at a work do on Thursday a former member of staff said “your not right are you, I can see it in your face” moments after another told me I looked fantastic. Ok, she has Crohn’s too, so she knows the warning signs, but I think I appreciated her honesty and her concern more than any of the compliments I’ve had over the past six months since my op.

I spent far too much of that night talking about my condition. I chatted about Sir Steve Redgrave, Darren Fletcher and my horrific experiences in the hospital, until I didn’t want to talk about it any more. It’s not that I’m not open (totally the opposite actually, I’d tell a stranger on a bus about my condition if Winnie started farting), sometimes I like to try to forget I don’t have it and just pretend I am a normal healthy person.

I’ve stopped sleeping properly really since my pre op assessment. I’m having weird fragmented dreams and waking up at random times again to my fistula pulsing and twinging. I’m tired of it, but I know worse is to come in the next few weeks.

I’m excited and apprehensive about my upcoming stint at The Mirror and my time staying in Canary Wharf. I’m just hoping my colitis doesn’t get worse, my eyes lose their monster crust and my skin stops bleeding and breaking for long enough for me to enjoy it.

It’s time to get cracking with my life – Inspired by footballer Darren Fletcher and other amazing IBD sufferers


I’m no fan of football, in fact I despise it, but I felt a surge of pride watching Darren Fletcher return to the pitch in his first match for a long time over the weekend. You see he may be a loaded footballer but me and Darren have something in common – we both suffer from Ulcerative Colitis.

I don’t think anyone who suffers from IBD could fail to be inspired by what Darren did this weekend. Even I, the one who hates football, cheered on as he took to the pitch for the first time. I’m the sort if person who usually bickers and tries to read a newspaper while my partner watches Man United but this time I actually watched and felt proud. It gave me shivers.

Ok yes all he did was play football, but what he did was show others having colitis shouldn’t stop you living your dreams. He showed that anything is possible. He showed that you can get diagnosed with what used to be regarded as a taboo, embarrassing illness, and still go on to play for one of the most famous clubs in the world. He showed all those teenaged boys and grown-up men who are going through the horrific pain of Crohn’s and Colitis that you can still become the person you want to be. I mean if he can get on a pitch and play in front of millions and millions of viewers we can try to live our lives .

That first touch of the ball inspired hope in so many people – the commentators definitely didn’t realise that and I’m not sure that he did either.

Yes Darren Fletcher probably had it a little simpler than the rest of us. I don’t mean his illness is any less than ours (before you start trolling me) but he must have had a great medical team around him, after all he is a world famous footballer, who would expect anything less. Oh and he earns a lot more than the average joe. But that won’t have made it any less scary, painful or nightmarish – and he had to get ill in the spotlight wondering all the while whether his career and life would be over. That’s something that I think everyone with Crohn’a disease and Colitis can relate to…I can.

I was a little bothered to hear the commentators comparing his illness to an injury. I can’t accept that. Yes being a sportsman and being off with an injury must be heartbreaking, but you can’t compare a sprain or a broken bone to a bowel filled with ulcers; to severe weight loss; constant diarrhea; crippling stomach spasms; fatigue; insomnia; vomiting, to name a few symptoms. What he overcame to get on that pitch was something many people wouldn’t try to come back from, something which would make even the strongest people give up.

And that’s why seeing him in such good health was so important. If he can do it so can the rest of us. I can’t say how he got well, or if (when) the disease will strike again, but if he can carry on so can we.

Since I started this blog I have come across so many incredibly brave people. It always amazes me where people with chronic and terminal illnesses get their strength from – it seems to come out of nowhere; something that stirs inside people when they are at their lowest moment. I see people climbing mountains while loosing their sight through diabetes to help others and their families not go through the same things; running hundreds of miles through desserts; dedicating their time to caring for others despite battling with a brain tumour – that’s just a few people I have come across.

People are truly inspiring. The IBD community are truly inspiring. Even living day to day with IBD is a challenge but the people I come across can’t settle for that, they want to jump out of planes, walk across fire and travel the world – they want to be the best they can be.

So it’s time for me to really get cracking with these challenges. Yes I’ve done a few, and some of them have been tough, but I’ve totally failed to crack on with the big adventures like walking along the Great Wall of China, or even begin learning French and learning to cook properly – I have no idea how I’m going to get a book published.

But if you guys can do these amazing thing it’s my turn to start taking things more seriously, so starting tomorrow I’m learning French properly. I’ll let you know how I get on…oh, and I, going to restart the reading challenge I only managed five months of reading a book a month – I’m not one to cheat.

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?’