My Crohn’s was not caused by junk food – my story after appearing on BBC Breakfast today

“My Crohn’s was not caused by a few sweets or treats”, says Chronicle reporter after BBC appearance

Rachel Flint hits-back after claims on BBC Breakfast junk food causes Crohn’s and Ulcerative Colitis

Chester Chronicle reporter Rachel Flint appears on BBC Breakfast

Looking at me you wouldn’t know I have an incurable illness, which has left me passed out on toilet floors and in so much pain I’ve begged to die.

I look like just like any other 26-year-old woman, but for more than half-my-life I have been suffering from an invisible illness, which has taken me to the brink of death and forced me to battle to stay alive.

At just 13-years-old I almost died from Crohn’s Disease; all because I was too embarrassed to talk about my agonising symptoms which left me feeling like a “freak”.

I now live with a permanent ostomy bag – after two serious operations to remove my ulcerated colon – and have spent the last year doing ridiculous challenges, bloggingand campaigning for greater understanding of Inflammatory Bowel Disease (IBD) and stomas.

So this morning, when I appeared on the BBC Breakfast sofa and was asked about the claims junk food could cause Crohn’s and IBD – I was appalled to think sufferers might be blamed for their own pain and misfortune.

Last year 19,405 young people, aged 16-29, were hospitalised with Crohn’s – which isn’t counting ulcerative colitis, the other common form of IBD – an astronomical increase from the 4,937 treated in 2003/4.

All my life I have battled against the public’s misunderstanding of my condition; been told I’m eating the wrong diet; I need a good feed; and constantly been the subject of nasty comments about my weight and non-stop toilet visits – I’ve often been calledanorexic and bulimic to my face.

I’ve learnt to be brave and put people right, but these comments still deeply hurt me – it is devastating that despite bearing my soul to the world, even some of my closest friends still don’t understand that my diet is not at the root of the problem.

To think that 1.5M viewers watching BBC Breakfast might now believe people with Crohn’s or Colitis have their agonising symptoms because they ate too many pizzas, sweets or drank too much fizzy pop in their childhood – well, it horrifies me.

In my view Dr Sally Mitton’s comments seriously undermine everything sufferers like myself have gone, and are still going through.

The idea diet causes IBD destroys the work advocates and charities like Crohn’s and Colitis UK have done to increase understanding of these misunderstood, incredibly serious conditions.

I don’t argue with the fact that diet can exasperate my symptoms; I can no longer eat raw foods due to my ileostomy; I’m lactose intolerant and I avoid spice like the plague – but it didn’t cause my illness.

But the fact is, no one has any idea what really causes Crohn’s or Colitis. There are many theories including genetics, hi-fat diets, an bacteria called MAP found in milk, smoking, and lifestyle – but not one has officially been found to be the cause.

I was brought up on an healthy diet of home-cooked food, no take aways, in a house hold of non-smokers. I was too young to drink, and I was a studious school girl who ran for her cross country team and played in a local brass band.

I was no “wild child” drinking behind the bus shelter and scoffing crisps – and even if I was I still wouldn’t deserve this condition.

Reporter Rachel Flint now has a permanent ileostomy and has never felt better

I was 14 when I was eventually diagnosed and told I would have to live with IBD for the rest of my life – it was like receiving a death sentence. I wanted to hide away from the world and curl up and die, and the prospect of surgery revolted me.

If someone had told me back then that I would be sharing my story on national TV, tweeting pictures of my ostomy to the world and have a blog about my stoma, named Winnie, with 50,000 hits – I would have said they were insane.

When I was a teenager my shame of this “embarrassing illness” almost killed me.

For almost a year I tried to hide my symptoms from the world; somehow battling through school while rushing to the toilet around 60 times a day in agonising pain – I often had accidents and always saw blood and mucus in my stools.

At the end of every school day I would collapse in an exhausted heap; and often I was so weak I didn’t even have the energy to climb on of bed – often sleeping on bathroom floors (something I was often forced to do during my time at University and while studying to be a journalist).

My weight plummeted to below six stone; through a combination of chronic diarrhoea and loss of appetite; and I was referred to a psychologist – submitting my family to the traumas of counselling for eating disorders.

My condition was misdiagnosed as tonsillitis and period pains, and more than once I was discharged from A&E as a teenage eating disorder case, being told to go home and eat more.

The first time I passed out in blinding pain while on the toilet – falling off the seat and knocking myself out when I hit my head on the bathroom floor – I should have told my parents.

But in reality it took a year and the biggest scare of my life for me to eventually confide in my parents.

I was in the toilet at a service station when I saw a sign on the door saying; ‘Do you have bowel cancer?’ Underneath was a list of many of my symptoms; abdominal cramps, weight loss, skin problems, loss of appetite, and the blood.

For the first time I realised that I could die. That my insistence on coping with this illness on my own, ignoring it, and hoping it would just go away, could actually kill me.

Telling my mum was the hardest thing I ever did. But without the support of my family I probably would have died. They have stuck with me through everything, from diagnosis to relapses and through all those times of stubbornness and pigheadedness – they turned their life upside down to help me.

Throughout all my treatments and hospitalisations I have seen things I would rather forget, and experienced things which are just plain horrific.

Tubes have ventured into places that tubes should never go. I’ve had endless endoscopies, colonoscopies, X-rays, scans, blood tests and infusions, and they all helped keep me alive.

Now 13-years-on I have finally had my entire large bowel removed – yes anus and all – and now live with a permanent ostomy bag.

For all my worrying about it, life has never been better. I feel pretty much pain free for the first time in as long as I can remember, and I feel strong, energetic and proud to have survived what will hopefully be the worse of this awful illness has to throw at me.

Doctors now believe my initial diagnosis may have been wrong; with biopsies saying my condition may actually be ulcerative colitis – but I may never know for sure as the types of IBD are so hard to diagnose.

The public needs to know more about Crohn’s and colitis. I have been lucky to be surrounded by a supportive family (my parents, sister and boyfriend), friends and colleagues – without whom I am sure I would not be here today.

I am no longer afraid of Crohn’s or ulcerative colitis – and I am no longer ashamed.

And I know one thing for sure – none of this is my fault.

• For support dealing with Crohn’s and Ulcerative Colitis visitwww.crohnsandcolitis.org.uk and join the Crohns and Ulcerative Colitis support group Chester on Facebook

Dashing Santa style – racing for new born babies with a Lego man in tow? Challenge #no53

Not many people know this but I’m a miracle. That might sound incredibly big-headed, but I really am a miracle. You see I was born incredibly premature. So premature that I was incredibly ill…in fact I died a number of times. Before you ask I don’t remember anything about it, I didn’t see the white pearly gates or a light at the end of the tunnel, but it happened.

I was born dramatically early. So yes I guess my life continued the way it would stay DRAMATIC! They do say start the way that you mean to go on – I undoubtably did that. I was born so small I fitted into the palm of my dad’s hand with room to spare (unbelievable, yes I can’t imagine it either) and was the smallest baby in Burnley General – I even appeared in the paper with smiling school children holding me (yes a little bit weird, but cute).

Yes being small is cute, but it presented its problems. In my eagerness to get out into the big bad world I didn’t give my little body enough time to develop, meaning that in the rush to get out my body simply didn’t finish the job. The result was a I closed hole in my heart valve. Obviously this meant I was fighting from the very second I was born….something it seems I’m really very good at!

Ok, let’s be serious a moment, because really this is no laughing matter. I don’t remember anything about any of this, my little body was broken, but really I had no idea, but my poor parents did. I can’t imagine the pain of having to watch your baby suffer, to not know if they are going to live or die. I can’t imagine having the baby I just gave birth to being snatched away and the pain and anxiety while waiting to hear their fate, while I should be holding my child and celebrating bringing them into the world. It must have broken my parents’ hearts.

I’m alive today because of a number of people who simply wouldn’t let me go. My parents, the doctors and nurses, and obviously my very stubborn little self, who fought back from the brink and mended over night (the start of a trend throughout my IBD and adult life) just as all hope was lost. But I’m also here because of my late Step grandad Nick; an amazing man who bought me an incubator to keep me alive because the hospital didn’t have one to save me. He died a few years ago, but I like to think he would be proud of what I have done with the life helped me to experience.

Anyway, why am I talking about this? Because today me and Andy (my boyfriend) ran the Chester Santa Dash to raise money for a number of charities; among them the Baby Grow Appeal. The BG appeal is to try to raise £3 million to build a new neonatal unit at the Countess of Chester Hospital to provide a more private place for families going through what my family went through; a place where support can be given to those who are going through uncertain and emotional times, and where the best care can be given to babies who are clinging to life and fighting with every little bone in their bodies.

Ok, you all know The Countess isn’t on my Christmas card list due to everything that’s happened over the years, but who cares when they are trying to achieve something so important, which could save lives and give comfort to so many people in such difficult times. So with that in mind we donned our Santa suits to race 4k around the city with hundreds of other Santas.

But being me and Andy we couldn’t do it without a bit of a twist, so Andy wore his giant Lego head and I donned my Press jacket and we suddenly became the stars of the show. We ran the whole thing, even though Andy could hardly see. We were a massive hit…well Andy was. I think he has started trending on twitter and is probably in hundreds of photos (there’s even a Where’s Wally style shot on the Dee 106.3 Facebook page). It was an incredible experience, and despite stinking and being bathed in sweat by the end we were incredibly happy – and even got interviewed by Dee 106.3 an odd experience with some bizarre questions which I didn’t handle that well – I’m used to the other side of the camera really!

So that’s another challenge down – what next?

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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

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

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

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

 

 

Now officially an award-winning journalist – just shows that no illness or surgery can hold you back

It’s hard to put into words what happened last night. For once in my life I have been left absolutely speechless, (which is probably a relief for most people who know me) and for once it’s because something amazingly good has happened and not because my bowel has fallen apart.

Me with the Coriams accepting my award – the proudest moment of my life

Last night I was named Weekly Journalist of the Year for the North West at the O2 Media Awards. To say the announcement was unexpected would be an understatement. Of course I knew I had been shortlisted as a nominee for the Young Journalist category and the Weekly Journalist category, but I never thought in a million years that I was going to win. The category was so strong. I hate the word gobsmacked, and my mum will shudder when she sees me using it, but for the first time in my life it’s the only word that can truly describe how I feel.

After everything that’s happened it feels like a miracle that I’ve won this prize. Things like this just don’t happen to little me. After years of battling through the constant side-effects and flares of Crohn’s/Colitis, achieving this award feels like one giant pat on the back. In fact it feels like being given a giant hug by the industry, like them saying “It’s ok, you’re still here and it’s going to be ok.”

In fact I’m more than ok. But I don’t think that’s sunk in yet. After 13 years I think it’s going to take a little while to realise that. Winning feels like sticking two fingers up to Crohn’s, surgery and all the, well basically, crap I’ve been through, and saying ‘screw you IBD”. Things are finally looking up.

The evening was magical. Yes we arrived exhausted and stressed from a two-and-a-half-hour journey through horrific traffic, and then our digital editor almost ran me over as I walked behind the car (lesson learned, it wasn’t intentional and she had been a hero driving us all there at short notice). But when we arrived at Liverpool Cathedral we were greeted by an ornate venue filled with glittering candles…it was just perfect.

I didn’t even begin to consider I even stood a chance of winning a prize. So when the Weekly Journalist category flashed up onto the screen revealing my goofy mug shot – which between you and me was of me eating a massive plate of spaghetti (I cropped the food out) – I thought ‘how ridiculous do I look’ before feeling a massive sense of relief when my face disappeared and was replaced by my friend and colleague Ellie’s picture and cuttings. To say I was surprised when it was announced that Ann and Mike Coriam were in the room to present the award would be putting it lightly.

I actually think in that moment my brain stopped working. People were smiling at me and saying it’s you…but I really couldn’t register anything.

Having Ann, Mike and Rachael Coriam present my prize was a real honour. Their

Rebecca Coriam

daughter, and Rachael’s sister, Rebecca, vanished without trace off the Disney Wonder Cruise Liner as it was sailing off the coast of Mexico on March 22 2011. She was just 24. The day Rebecca disappeared I was the first journalist to meet the Coriam family, and since then I have been in awe of their unswerving determination to find out the truth about what happened to their daughter – no matter what obstacles have been put in their way.

Ann and Mike have been through so much, and although I can’t begin to comprehend what they’ve been through, I feel like I’ve been with them every step of the way. They are truly remarkable people – the whole family are – who have been through and are still in so much pain. But despite everything they are determined to fight for answers and are on a hell-bent mission to stop what happened to their daughter happening to anyone else. I admire them for that.

The fact they took the time, despite all the bad times I must remind them of (the first heartbreaking press conference, the time some moron hacked into Rebecca’s twitter account and bank account, and all the false hope given by potential sightings) to come and give me this award means more than I can say. This family has been a large part of my career, and my life, and I would now consider them as friends – I hope they feel the same.

I felt like my heart would break as Ann praised my determination to not let people forget about their fight to find their daughter. And when the time came me to go up to the stage I felt like my legs were made of jelly. I couldn’t tell you what music was playing as I walked up, or what the woman with the microphone said as she shoved it right up my nose. I don’t think it even crossed my mind I had won, I was just so humbled they had turned up.

The finalists for the Young Journalist of the Year – aren’t we a good looking bunch

God knows what I said to that packed room of industry leaders that night, the editor of the Echo Ali Machray reassured me I’d done fine, but for all I know I did the penguin soldier dance with my kickers on my head. I regret not saying anything about my family or colleagues but I was not prepared. After being raced off the stage I went for a far less intimidating interview backstage, by then the fog had started to lift and I was starting to realise that despite everything that had happened I had done it. I had made it through it all, I was still alive and I had won! I think I gabbled something about Ann and Mike and how amazing it was they were there – either way I’m sure whatever I said will be replayed again and again, and I have a horrid feeling it might even appear to haunt me on local tevelision – I hope it wasn’t embarrassing.

The rest of the night was a mixture of emotions and passed by in a whirlwind. I did see the Coriams as I left the interview and had a few lovely moments with them before they were whisked off for an interview. I don’t think any words could have described how humbled I was they were there and I’m afraid to think it didn’t come across as I was to shocked to even string sentences together at this point.

From then on the wine flowed and after recovering from my shock I joined in the celebrations as the Liverpool Echo won prize after prize for their amazing reports on the Hillsbourgh disaster. It was a fantastic evening, topped by my friend and fellow PA graduate Joe Thomas gaining the Young Journalist of the Year award, finally recognising his dedication and hardwork.

Funnily enough I missed the entire part of this evening. The wine and serious lack of food (we missed dinner) was taking its toll on my ostomy bag, which had been rapidly filling up and nearing explosion point for the majority of the evening, so I thought that it was the right time to rush to the loo and quickly avoid a scene. I couldn’t have been more wrong. It seems the moment I reached the bathroom to deal with Winnie they started the category, which, by the way I was nominated for. I happily chatted away to two of my favourite characters from Hollyhoaks about the Coriam family while my stories where appearing on the screen. As per usual I didn’t have my phone on me so no one could txt and warn me, and I’m kicking myself that i didn’t get a photo with them for the scrap book.

I guess you’ll just have to take my word for it that I met Alex Fletcher aka Dianne O’Connor, and Sophie Austin aka Lindsey Butterfield from Hollyoaks – possibly better known for appearing in Brookside. I even told them about having an ostomy…I’d like to say because I was trying to raise awareness but probably because I’d had too much wine and it felt like literally hours since someone asked me how I was feeling.

SO as per usual I arrived to something late because of having to go to the toilet. I made a bit of a scene racing towards the stage to collect my certificate in a total state of confusion. I could almost feel everyone that knows me smiling and thinking typical Rachel….it was fitting I suppose and made me laugh later, but I was gutted that I missed seeing my friend collecting his well deserved award.

So what does this all mean? You know what I’m not entirely sure. But in the moment my name was announced it was like a huge weight had been lifted off my shoulders. It might sound silly but it was like an invisible line was drawn across the room leaving all the illness and crap and heartache behind it. It felt like I was finally getting somewhere and that at last, hopefully, I won’t be stopped moving forwards in my life and career by this horrible illness. I’d finally done it and it had all been worthwhile.

Sorry this has been so long, but things like this do not happen every day, and I have to add that the award is not just for me but my family, friends and boyfriend who have kept me positive and stopped me giving up when no one else could. Also without the company I work for and the staff at the Chester Chronicle being so understanding about my illness I would not be a reporter today. People from all across Trinity Mirror have gone out of their way to help me, they didn’t have to, and for that I will forever be grateful.