Crohn’s and ileostomy go viral after unfounded junk food claims – your amazing reaction to BBC appearance

Yesterday I appeared on BBC Breakfast to talk about the rising number of young people being admitted to hospital with Crohn’s Disease. I was on the famous red sofa for less

On the BBC Breakfast sofa

than five minutes (not enough time to tell a story of 13 years of IBD drama and life with my stoma), but when I came out of the studio it was obvious that in the short space of time a bomb had gone off in the IBD world.

And, unfortunately it wasn’t because of my bright red shoes!

Within seconds of saying goodbye to Louise and Bill I was inundated with texts, tweets and facebook messages. Me and the CEO of Crohn’s and Colitis UK David Barker stood in the green room staring at our phones as the messages flooded in from all over the country. Almost everyone was congratulating us on standing our ground, raising awareness for sufferers and talking about the illness in a “un-glossed” light. And my mum, sister, boss and boyfriend were extremely proud. But every single second my phone was buzzing with outrage over the junk food comments aired during the programme; which unfortunately myself and David were unprepared for as we sat down to face around 1.5M viewers on national TV.

The moment I was asked the junk food question I was absolutely infuriated – and, from the response thousands of other people were to.

As a journalist I’m used to being on the other side of the notebook/microphone, so being interviewed was a strange experience. I had no idea what they were going to ask me; so I suppose you could say I got a taste of my own medicine. But working in the media, I also know how the news works. Media outlets saw the new quote from Dr Sally Mitton’s interview on the Newsbeat segment and leapt on them. It was controversial and, “well news” (it was a new angle to the Crohn’s story) so the media ran with it.

But this time it wasn’t me writing the news. I was at the centre of it: me and tens of thousands of other sufferers. We were reading stories about ourselves – and they were unfounded. Either through editing in the studio or Dr Mitton simply coming out with what she believed was a true, but damning and unfounded comment about junk food and Crohn’s; she told the world that sufferers were to blame for a lifetime of pain, ulceration and hospitalization. Which is out-of-order and, in my opinion, totally untrue.

To think that those with IBD cause their condition by eating burgers doesn’t ring true with me – you only have to say SIR STEVE REDGRAVE and that theory is halted entirely! 

Me and CEO of Crohn’s and Colitis UK David Barker

By the time I got back to the office twitter had exploded; the story had gone viral. I was scrolling through thousands of tweets about what had been said. Thousands and thousands of people were upset and angered by it. Rightly so – they have been fighting against these misconceptions for their entire lives!

I had to respond in more depth and try to quash the misinformation. It wasn’t enough but I hope it made a difference – in the end this story went viral and was one of the most read stories the Chester Chronicle has had on their website. Crohn’s and Colitis UK posted it on their facebook page and the comments were through the roof – it was incredible and I actually became very emotional while reading your stories; a lot of which were just like (or even more painful) than mine.

It was such a shame. Crohn’s and Ulcerative Colitis get very little air time. I know it has grown recently; with celebs like Towie’s Sam discussing her condition in the national press, but it is still not talked about as much as cancer, diabetes and many many others. We had gone on the show to talk about Crohn’s and the effect it has on young people trying to get through childhood, school, university and their first jobs while managing an all-consuming, exhausting and debilitating illness. We also wanted to talk about the amazing work on fatigue Crohn’s and Colitis UK has done.

Despite the anger, the public’s reaction to me talking about my battle with Crohn’s/Colitis and telling the world about my ostomy bag, was astonishing. I have been blown away by the thousands of tweets of thanks and support you have all sent me. I have been humbled by your stories, which you have shared with me and I have been astonished by how publicly people have talked about their condition – which I was once to embarrassed to even admit myself.

It didn’t end up being a bad day for Crohn’s and Colitis or those with stomas. In the end the controversial comment sent IBD spiralling to the top of the nation’s minds. Crohn’s was trending on twitter; advocates were posting informative blogs; people were sharing their experiences; and national organisations sent clarification statements to the national press to halt the misinformation quotes. I know that celebrity Carrie Grant sent a letter to the doctor in question advising her to get media training, and hundreds if not thousands complained to the BBC.

But more importantly it got people talking about IBD. And, in my favourite awareness raising moment of the day, a young woman called Vicky posted a picture of herself sunbathing with her ostomy bag on show – she looked incredible. The picture went viral, with people sending it to their friends, followers and family members. It was an incredible moment and a brave and positive move, which I hope has broken some taboos. The picture had generated over 200,000 likes last time I looked.

And if you want to know; despite everything that happened I really enjoyed being on the BBC. Yes, it was tough, scary and nerve-wracking. I only found out the night before and had to get up at 5.30am! But the crew were lovely and seemed genuinely interested in me and my condition. The toilets were not the best! But Louise, Bill and the whole crew really did everything they could to put us at ease. And it was a pleasure to meet David – who appears to be a great spokesperson for Crohn’s and Colitis UK.

I did almost break my neck in those shoes though – and then where would we be!!!

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A senior reporter at last -overcoming the hurdle

It’s been more than a week since my last blog. For that I can only apologise, but life has been rather chaotic over the past few weeks. I hope you are all well (as well as you can be) and none of you are reading this from the sorry prison cell of the hospital bed.

Last week I told you all about my celebrations following my surprise journalism award, and how humbled and shocked I was to be recognised for my role in the newsroom despite all my forced sick days (when I say forced I mean being told to leave as I’m so ill they can’t
stand to watch me battle through the pain anymore), time off following my surgery and slow return to the front line following numerous complications and a body which simply refused to heal.

I know I told you all I wouldn’t go on about this anymore, so I won’t. But something appears to be in the water right now. Indeed a person in the media company I work for, who also battles with Crohn’s, said that I appeared to be being looked after by “a very good fairy”… I’m just hoping my fairy godmother sticks around a bit longer to get me through Christmas – a dreaded time where my illness always raises it’s ugly head and lands me with a surprise vacation in hospital.

This week I passed my senior reporting exam. The news came to me during a bit of a delicate moment in the office, and was dampened by the fact that we were dealing with something which could ultimately have had serious implications. My editor told me just at a moment when I was sure I had, once again failed. He did that trick, you know the one where you look serious and upset as you deliver news only to change into an expression of joy and say “you’ve passed”. I was ready to burst into tears before he said those two magic words. I just don’t know what I would have done if he had told me I had failed and would have to take it again. Needless to say he would have had to send me home…. If I’d failed this time I don’t think I could have had the strength or determination to do it again.

I’m no quitter, but my senior exams have been a huge hurdle for me to overcome. I’m not blaming it all on my illness – as I don’t really believe it can stop me advancing if I really really battle through – but this exam has been the bane of my life for almost two years. The system has been against me, meaning that since the first day I misheard a figure during the news writing exam after a solid week of less than 3 hours sleep a night during a very bloody and painful flare-up, I have had this exam hanging over me stopping me passing Go and collecting my £200 – instead sending me straight to jail.

I took the exam twice. Both times were incredibly frustrating and stressful, and each time I failed the pressure I put myself under got considerably worse. Funnily enough the part of the exam which I seemed simply unable to pass was the part which should have been a piece of cake…the news writing exam…basically what I do every single day – but something about the exam situation made it become an enormous task which I quite simply couldn’t pass. I think I always put myself under too much pressure. I passed my law and editors’ panel first time round with no trouble whatsoever…but when the time came to sit down and write, the stress, combined with my deep fatigue, made it impossible for me to succeed.

According to Trinity Mirror law if you fail your senior news writing exam you have to wait six months to give it another shot. Rules are rules. But in my case this caused chaos. After waiting six months, I would no doubt be in the middle of a flare when my test popped up again. So I failed a second time. Then, when the third opportunity came round I was in a hospital bed awaiting having my bowel removed, I couldn’t even eat soup let alone travel to Liverpool and take an exam, so I didn’t take it. This meant waiting another six months. Personally I think that’s a little unfair, but rules are rules and there is only an exam day every six months for a reason – so I had to sit tight in the hospital knowing that my illness had well and truly scuppered my career and stopped me getting a very much needed pay rise. That will always stick with me as a dark day.

I’m not sure what I would have done if I hadn’t passed this time round. I suppose it isn’t worth thinking about, but even now, a few days after being given the news, I can feel the relief lifting like a great weight off my shoulders. My illness is not helped by stress, in fact I would go as far as saying it is seriously exasperated by it. And knowing that I no longer have that hanging over me makes me feel around a stone lighter. I was worried that if I failed I wouldn’t be able to take it for another year; due to having to have another load of surgery in the coming months I would probably be on the operating slab during the next examination day – something I just couldn’t bear to comprehend. Now I no longer need to worry. It’s all over, finally I can just get on with doing the job I love without worrying about exams or ticking boxes.

It may be a small thing to most people but to be able to officially say “Rachel Flint senior reporter” is worth more to me right now than any trophy, award or title. That tiny addition to my job title is like me sticking two fingers up to my IBD and saying “you didn’t kill my dreams, not for one second”!

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!

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.

A decade in the making – finally being diagnosed with arthritis

The first time my hands froze into a claw-like grip, curling up like the crazed witch in

Mugs can be too heavy to hold when my hands are bad

Walt Disney’s Snow White as she gives her the poisoned apple, I thought I was having a stroke. I was sitting in a GCSE maths exam scratching my head as I tried to work out some crazy mathematical equation and suddenly my hand just wouldn’t move. I tried putting down my fountain pen, but my hand wouldn’t let go.  It was suddenly like my fingers had been glued to the shaft of the special pen my parents had bought me for school that year. I remember looking down in confusion and seeing that my hands had gone a skeletal shade of white. I remember prodding the death-grip hand with my normal fleshy coloured hand and the rising panic as my fingers started turning black as the blood failed to come back into my hand as I prodded and prodded.

Shockingly I didn’t fail that GCSE. I managed to battle through, but not until I had painstakingly prized my fingers apart, slowly moving my stiff joints until they were flat on the desk next to my incomplete test paper. It seemed to take a life time as the exam clock ticked slowly away and my future seemed to be literally slipping through my wax-looking fingers. I remember thinking that everything would be ok as long as I could finish the exam – and as long as my fingers didn’t snap off!

I was just 15-years-old.

My hand – when it broke two years ago and osteoporosis was discovered

Over the years this joint stiffness intensified until there were days when I literally felt like a tin man needing oil just to move. Every bone, joint and muscle felt like it was made of stone. I creaked when I moved, and when stretching in certain ways my bones made a sickening snapping sound.

Some nights, after gripping a pen all day or spending hours shading and sketching for my GCSE and A Level Art coursework, my hands would freeze solid when I was trying to eat. My dad would have to prize my fingers one by one off my knife and fork, pulling my joints painfully back into position. I still have to do that now. But back then it all seemed so much more frightening.

My hands went through their most challenging few months when I was learning shorthand for my journalism course. I would spend hours every day scribbling the hieroglyphic like symbols, forcing my hand to move faster and faster across the page in an attempt to get up to the required 100 wpm. It was agony. In some of the exams I had practiced so much before the test that my hand simply wouldn’t move across the page. Every second was agony. Of a night after hours of practicing i would lie with my hot water bottle pressed against my wrists trying to ease the pain shooting through my joints…I often dropped wine glasses, pens, handbags. It still happens now after long days in court, but I guess I’ve just got used to it.

Learning shorthand was like boot camp for journalists…survival of the fittest, but it was torture for my hands, and the more they stopped me progressing the more frustrated and depressed I became.

Me on the PA course for Journalists – best 17 weeks of my life but most taxing on my hands

Over the years the pain that started in my right hand and wrists has spread to most of the other joints in my body. I often lie awake at night due to the pain in my lower back, my knees sometimes give way and my blood in my wrists sometimes feel like its burning as it travels through my veins. My shoulders are the worse, they always feel like they’re dislocating, and I can’t undo my bra from behind.

Despite all these obvious joint problems, and despite complaining about them to my gastro consultant, IBD nurse and surgical team, I have never had any treatment for my joints. I have always been fobbed off with the bog standard “It’s all related to your Crohns/Colitis” reply to my pleas for help. This has been going on for almost a decade.

Last week I finally got an appointment to see the Rheumatologist. I was astounded when I opened the letter, if anyone had been watching they must have thought I’d won an amazing prize from the delighted look of astonishment on my face. I went along to the appointment and after being stretched sideways, backwards and forwards by a very lovely consultant I was told I had Rheumatoid Arthritis – possibly induced by a decade of steroid treatments combined with the side effects of my Crohns/Colitis.

I would have punched the air if I didn’t have such bad joints. It was a ‘I told you I was ill’ moment that would have made Spike Milligan proud.

I already have osteoporosis, and now I almost officially have arthritis. I say almost as I have to get some tests done before anything can be certain, including a scan of my back, bloods..etc. But I am finally getting the treatment I need, and amazingly enough I have been signed up to get physiotherapy – at last.

I guess only time will tell how much damage the doctors ignoring my symptoms for the past 10 years has done, but for now I’m just happy that someone has finally listened to me. I’m hoping that the injections (humira? – which I have already been there done that) will not only mean I can finally open a bottle of pop without knocking on a neighbour’s door for help, but control my IBD which is on the verge of an especially nasty flare at the moment.

Meanwhile if any of you have any advice for things I can do to ease the constant joint ache and pain please let me know.

Back to work with my ostomy – Winnie’s first day in the office