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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One determined woman – placing an ad in the local paper for a kidney donor


Sometimes in my line of work I come across some truly amazing people. Aside from

jan Bell - remarkable woman

jan Bell – remarkable woman

dealing with community issues, court cases, crime, scandals and planning issues, on a weekly basis I have the honour of coming into contact with some of Cheshire’s most determined, selfless and brave people. Hearing their stories is always a mind-blowing and humbling experience, but every so often there is a person whose bravery, coverage and determination leaves you in utter awe – so much so that it really puts your own troubles into perspective.

I don’t often talk about work on this blog, but I just have to share this story will you about a woman who seriously made me take a hard look at myself, my life and encouraged me to get cracking with my challenges. It is also one of those stories that restores your faith in humanity – until moments later someone lets a door swing shut in your face that is!

This week I had the pleasure of talking to a truly remarkable woman. Jan Bell is 43-years-old and has already had two failed kidney transplants. She relies on daily dialysis to survive, but after her second transplant failed she is facing a race against time to find a live kidney donor to keep her alive. Her veins have been so badly damaged by years of intensive treatment and dialysis that she now relies on a neck line to keep her alive – if this narrows and fails she will have months to live. Time is rapidly running out, and without a stranger giving her a kidney she could be dead by Valentine’s Day.

Remarkably despite years of illness – with her face and joints swelling up until she was often unrecognisable; often being so weak she couldn’t climb stairs; and dealing with septicemia and infections following operations – Jan has remained a successful and well-respected businesswoman within Cheshire, winning numerous awards for her beauty clinics across Chester and Frodsham. Speaking to Jan it was difficult to remember I was speaking to someone who was so seriously ill, that she might be dead in a matter of months, she was just so positive, chatty and upbeat. Her bravery and positive attitude was astounding. In fact we had such a long chat about hospitals and treatments that I told her I had Crohn’s – she said she would hate to have such a horrible condition and sympathised with me – and this lady’s been on the transplant waiting list for almost two decades!

While on the phone we spoke of how Janet (Jan) wanted to stay alive for her customers, how she wanted to keep her business going and of her dreams for the future. Suffering from Crohn’s/Colitis myself and knowing how difficult it can be to hold down a full-time job while trying to manage a chronic condition, it was astounding to hear how Jan managed to pull off a string of successful businesses on her own while dealing with the ongoing side effects of kidney failure for the past 17 years. Jan told me she felt a little bit like a failure when she was forced to abandon some of the branches of her beauty clinic over the past few years due to feeling weaker after the second kidney transplant failed. Despite understanding her feeling of failure due to illness (having to abandon many things and miss out due to my IBD) I couldn’t disagree with her more. This woman is a true heroine….running a self-made business and standing behind that counter every day while dealing with kidney failure – if that doesn’t deserve a slap on the back I don’t know what does.

Last week, after being told she had to find a live kidney donor or she would die, Jan did something completely unprecedented. After exhausting all options, having asked customers, friends and family to no avail, Jan placed a personal ad in The Chester Chronicle asking for a live kidney donor. It was a tiny ad, bizarrely placed among adverts for parrots and stairlifts, but the response she received was amazing.

The advert

The advert

When i spoke to Jan on Tuesday she had already received 64 responses from total strangers all across the country and even the world willing to see if they were a match to give her a kidney. I was shocked. And when I spoke to the agent who helped her place the ad they said the help line for Jan was overflowing with around 100 responses. In fact every time I rang it to talk to Jan it was so full it wouldn’t accept any more messages. Unbelievable. Ok, many of you are probably thinking (cynically or realistically) there must be a cash incentive involved? And Jan admitted some people had emailed asking for cash, but true to her ad Jan insisted she was not willing to pay any money for the kidney – she is relying on human kindness.

And man she’s had a bucket load of strangers willing to save her life. If that doesn’t change your opinion on humanity I don’t know what will.

Jan says she is realistic about the process. She understands that the probability of more than a handful being a match is very small, and also realises that the reality of donation may lead to many pulling out, but she wants to live and is willing to try anything to find a donor to stay alive. I admire that. it makes you wonder what you would do in that situation, what you would do if you found out you had months to live if you didn’t find someone willing to give up an organ for you. Would you give up, or would you fight and try everything possible, no matter how desperate or unconventional it may be? I like to think I would…but who knows.

Photo by Ian Cooper

Photo by Ian Cooper

Ok, so hundreds of people didn’t come forward just because of the tiny advert hidden within the local paper. The national press caught on to it and Jan’s story was seen by tens of thousands of people on Daybreak, Granada, The Mirror and the Daily Mail, as well as in the story I did for the Chronicle.

But, as Jan said, it just shows how such a simple thing can work. And I think she was right when she said that if the NHS put adverts in local papers they could have more people signing up to be donors that ever. If it works for her it might work for anyone, who knows?

This month Jan has a pioneering operation to put a bolt in her neck line to stop it from narrowing as quickly. This should buy her much-needed time to find a donor. I hope it does, and I hope something comes from all this. Not just for her, but for all the people she has encouraged to sign on to the register to become live donors. In her words not mine, if she helps just one other person on that waiting list “it will all be worthwhile”.

To read Jan’s story in full visit: http://www.chesterchronicle.co.uk/news/chester-cheshire-news/frodsham-woman-overwhelmed-response-after-6302516

 

 

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.