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 and join the Crohns and Ulcerative Colitis support group Chester on Facebook

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

  1. Our son was 7 when he first became ill. He was hospitalised and subsequent diagnosed as having Crohn’s 18 months later.
    His diet had always been good and nutritious. To ease his symptoms he was encouraged to eat a low residue diet that included junk food which he at first disliked.

    • Yes, that is true. I was the same – very healthy to being told to eat bland, junk like food. In fact one of my “medications” now for my stoma output is marshmallows!!! He sounds like a brave lad, seven is really very young to be dealing with that sort of thing. Thank god he has supportive parents.
      Also have you joined CICRA – they are amazing for young people with IBD.

      • Thank you for your comments.
        Although we are supportive of CICRA, we are members of CCUK and I’m Chair of the CCUK Family Network (formerly Smilie’s Network) National Organising Team. We were founding members of Smilie’s when it started in 1995.

  2. Hi I too suffer with crohns since 2006 when I was told I had ulcerative colitis. . I am slot older than you I was 49 when I first found out and have suffered bad ever since taking tablets and the pain is like no other and having to rush to the toilet it’s horrible I still gets cramps. .. going bk a couple of years ago I seemed better but now I suffer pretty bad after the loss of my 16 yr old son in 2011 so I have been pretty stressed and down am so glad you are feeling better now after yr operation all the very best for the future Arline x

    • Thank you for sharing your story with me. It sounds like you have had a horrible time. Are you a member of Crohn’s and Colitis UK? They have Can’t Wait Cards and can issue you with a disabled toilet key for when things get bad. I am so sorry about your son, that must have been really hard. Stay strong and positive. There is no cure, but treatments seem to be getting better all the time – and the surgery (while not for everyone) is the best thing I ever did xx

  3. Hi Rachel, I saw your piece this morning on BBC Breakfast, you came across brilliantly. I’m a nutritionist and appreciate your reaction to those implying that you may have had a role in the development of your condition, it must be incredibly upsetting for you. But I hope you don’t dismiss the amazing results that can be obtained with therapeutic nutritional measures designed to calm inflammation and heal the gut for many people? Surgery was obviously the right decision for you, but it would be a shame if everyone saw it as their only option. Very best wishes.

  4. Hi,
    I posted this on FB – but couldnt get it to post on the newspapers page. I am another proud baglady -thanks for standing up for us today against such infantile ‘its all your own fault’ rubbish. By the way, Sammy the Stoma says hello to Winnie LOL

    take care
    kaj xxxx

    As usual the media want to make things all simple and interview rentaquote experts who know nothing about what it is like to live with IBD. For their information I became a strict vegetarian at the age of 18 – I ate extremely healthily through my 20s, even eating a raw food only diet for 2 years. I drank only fresh squeezed juice and ate salads every day, sprouting seeds and growing salad greens.There was no junk food in my kitchen.
    None of this made a blind bit of difference as I was diagnosed with IBD at age 30 and have now lost most of my digestive system to this horrible disease. Please dont make the mistake of believing simplistic explanations – IBD is an incurable disease of unknown origin – and it will never be cured until a real cause is found.

    • Winnie says HI Sammy 🙂 I love that we all give our stomas names!
      It is a ridiculous idea that everyone could be to blame for everything that happens to them. Not just IBD. But often we are told that anything we do that is bad can cause illnesses. But this is particularly bad as we are already fighting a battle to stop people believing that bad diets are the cause of IBD; we don’t need anything else to misinform the public and people who really need to understand this is a very serious condition.
      I totally agree with you. And I am sad that you have gone through so much pain.
      I hope you are as well as you can be – Winnie waves 🙂

  5. I am hopping mad about how that story was presented. Thank you so much for speaking up against it; I’ve spent the better part of my life trying to correct people’s misconceptions about Crohn’s disease (there comes a point when yet another accusation that it must be due to eating badly makes me want to scream), like so many of us, and when something like this comes along it legitimises so much ignorance.

    Watching the BBC’s footage of Dr. Sally Mitton, after her couple of sentences about “lifestyle” factors/junk food, they cut to a reaction shot and the implication is that the audio is continuous, but I wonder what they might have cut out there – for all we know, she went on to qualify her original statement (I would like to see a citation on the research re: junk food) and to mention possible genetic and environmental factors, stress etc.

    But they seem to have chosen a soundbite which fits right into the present political and media climate of blaming people (particularly those who are disabled or chronically ill) for their misfortunes. Deeply disappointing.

    I’m glad, at any rate, to have found your blog!

    • Hi Angeline – I couldn’t have put it better myself.
      They will only have so long for the snippet of film and will have chosen the quote that fits with the story – which I think is the wrong one!
      I feel so sorry for the brave young man in the Newsbeat film – he was so courageous and now his story is totally undermined by some either bad editing or an very bad interview / possibly a combination of both.
      Thank you for your comment – I hope that you keep reading my blog and finding it informative, entertaining and useful xx

  6. Wow!
    I don’t have Crohns but was diagnosed with chronic IBS about 5 years ago, I know it’s not half as bad as Crohns but it affects my life in a huge way!
    I was also told I had an eating disorder even my family didn’t believe me!!
    I love that people are finally taking note that these types of illnesses are real and not in people’s minds!!
    Love your blog 😊

    • I think you should really shout about IBS from the rooftops. The anorexia comments and misdiagnosis still really trouble me. I am in a constant battle with my weight, diet and attitude towards food – caused by years of pain and vomiting. It angers me that people still jump to the conclusion of someone being thin = eating disorders (and even if you did have one its heartbreaking to think people can be so negative and judgemental).
      Stay strong.

  7. So glad you got the chance to speak out against that quack of a doctor. Why does this happen every couple of months? Just when things are going well, BAM, another stupid article comes out.

    Keep up the great awareness you give. One day, we will finally educate people enough so that these dumb articles won’t be written.

  8. Wonderfully written, well done you. My Stoma is due to bowel cancer and I had no knowledge of what IBD was before having a Stoma, let alone how awful it could be. Relieved you are pain free now.

    • thank you so much Nicola – sounds like you have been through the mill as well. I hope you are finding life with a stoma as pain free as i am – so long as you don’t eat any sweetcorn by mistake!!!

  9. I just found your blog & I am so grateful to have done so! I’m reading your stories, your experiences, and feeling less alone. Thank you for that.

  10. Wow. You are very brave and can really help to advocate for all the young people out there suffering in silence. As a radiographer I know how serious these conditions are. IBS is also crippling and affects all ages. I really hope you don’t suffer more pain. NEVER suffer in silence again, I hope you know you don’t need to hide and there are many people who understand and work in the Heath service to support people back to a good quality of life. Good luck 🙂

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