Do You Have IBD Fatigue?

The first ever fatigue rating scale for IBD!

In-depth qualitative interviews with our study volunteers confirmed that fatigue was a big issue that had a severe impact on many areas of life.  They also confirmed a need for a way of measuring fatigue to enable people with IBD to discuss fatigue with their health care professionals and test interventions and treatment.

Fatigue scales had been used in many other conditions, to help patients and doctors measure levels of fatigue, however there was no scale that had been developed specifically for IBD.

Our fatigue scale –which can be accessed and scored below will enable people living with IBD to:

• self-assess their fatigue and the impact is has on their lives

• more easily raise their fatigue symptoms with healthcare professionals

• assess whether changes in lifestyle are having any impact on fatigue levels

• discuss their fatigue with family, friends and employers

Apology From Dr. Mitton Over the Junk Food Drama...

In case you were on Mars last week and didn't see the controversial reports on TV and in the papers about Junk Food and Crohn's Disease...

See the original interview here and read up on our interviewee's experiences here.

Following all your comments, complaints and our efforts behind the scenes, calling journalists and getting edits, we were pleased to read this from Dr. Sally Mitton, whose comments about junk food causing Crohn's Disease were at the centre of the debate.

First and foremost I would like to apologise for the distress that I have caused by what was shown on the BBC to all Crohn’s disease and ulcerative colitis patients. I was unable to respond more quickly to the reactions to this report due to very heavy clinical commitments. I feel that what I said and the subsequent coverage has been misinterpreted and I would like to clarify this now.

I said that Crohn’s disease occurs in those who are genetically susceptible and that the unexplained recent increase in numbers diagnosed amongst young people in the UK is likely to be related to life style. I did mention pre diagnosis diet and multiple courses of antibiotics as possible factors preceding the development of overt disease in some cases. I did not say that junk food or frequent courses of antibiotics CAUSE Crohn’s disease. I am very aware there are many patients with IBD who eat a very healthy and nutritious diet and have always done so before their diagnosis.

However, since the initial report on 18th of June there have been subsequent newspaper and television reports that focus on the assumption that Crohn’s Disease seems to be “caused” by junk food and multiple antibiotics. This is not my belief and is a distortion.

I did not mean to imply any element of self-infliction and I am appalled to think this could set back public perception of IBD or that sufferers might be blamed for their own pain and misfortune.

I would like to sincerely apologise again for the distress that my comments have caused.

Dr Sally Mitton
Consultant Paediatric Gastroenterologist



And that is where we will draw the line on this. It was unfortunate that the real point of the appearance of our CEO and our member Rachel Flint was to talk about the Fatigue Project that is the focus of our media campaign this year. SO that's what we'll be talking about from now on!

New Crohn's and Colitis UK Study Offers Fatigue Breakthrough

As part of a 4 year research project into the causes and symptoms of chronic fatigue for the estimated 260,000 people living with Inflammatory Bowel Disease (IBD), medical research and patient support charity Crohn’s and Colitis UK - with the support from Big Lottery - is addressing the ‘most over-reported and under-managed’ problem for people living with these debilitating medical conditions – fatigue.

From today, people with Crohn’s and Colitis will be able to measure the severity and impact of their fatigue objectively using the newly researched and validated IBD Fatigue Scale which is available on www.fatigueinIBD.co.uk

This new development is the product of the charity’s successful scientific partnership with researchers at King’s College London, University College London and the Addenbrookes’ NHS Trust.

Welcoming the launch of the Fatigue Rating Scale, Professor Christine Norton, of King’s College London, and principal investigator for the Fatigue project said:

“Until now, patients with severe IBD Fatigue have struggled to overcome this debilitating, invisible symptom. We know that three quarters of people experience fatigue during a disease flare-up, but we also know that 40-48% of patients in remission continue to suffer badly with fatigue.

“The IBD Fatigue Scale will allow patients to discuss this under-recognised symptom with their healthcare professionals bringing them together to address and improve the treatment of this serious symptom. We hope that the new IBD Fatigue Scale will become fully integrated as standard good practice in all UK hospitals.”

For the 10,000 newly diagnosed young people with Crohn’s and Colitis every year, fatigue is a deeply debilitating symptom and Crohn’s and Colitis UK is delighted to welcome the support of Sam Faiers. Sam is helping the charity to fight IBD fatigue by improving awareness of this ‘hidden symptom’.

Sam explains:

“The exhaustion I experienced was horrible, life limiting and a typically untreated symptom for people with Crohn’s or Colitis. This new Fatigue Scale is a break-through and will make talking to my doctors much, much easier. This really is great news for everyone with IBD.”

Helen Terry, Director of Patient Support and Information at Crohn’s and Colitis UK, sums up:

“Some doctors and nurses are unaware of how much fatigue can affect people with IBD and many do not ask about it during an appointment. We are asking everyone with IBD to make sure that they have told their healthcare professionals about this under recognised symptom and suggest that they use this IBD Fatigue Scale to enable them to formally discuss their fatigue with their medical teams. We hope that the Fatigue Scale will greatly improve the quality of discussions between patients and their doctors.”

Fatigue in IBD

People with Crohn’s and Colitis can now measure the severity and impact of their fatigue using a newly researched and validated IBD Fatigue Scale.

The IBD Fatigue Scale can be found on our new Fatigue in IBD microsite, along with our research findings from the 4-year project:

• www.fatigueinIBD.co.uk
• 
  

The scale is the product of our charity’s successful scientific partnership with researchers at King’s College London, University College London and the Addenbrookes’ NHS Trust.

• Read the Fatigue press release
• 
  

For the 10,000 newly diagnosed young people with Crohn’s and Colitis every year, fatigue is a deeply debilitating symptom and Crohn’s and Colitis UK is delighted to welcome the support of Sam Faiers. Sam is helping the charity to fight IBD fatigue by improving awareness of this ‘hidden symptom’.

“The exhaustion I experienced was horrible, life limiting and a typically untreated symptom for people with Crohn’s or Colitis. This new Fatigue Scale is a breakthrough and will make talking to my doctors much, much easier. This really is great news for everyone with IBD.”

We are still looking for media volunteers to speak to the press in the upcoming weeks about their experiences with IBD Fatigue. If that sounds like something you'd like to get involved in, please email media@crohnsandcolitisuk.org.uk. So follow in Sam's footsteps and speak out about this often invisible and little understood symptom of Inflammatory Bowel Disease.

Rachel Flint's Experience in the Junk Food Debate...

Crohn's and Colitis UK member Rachel Flint appeared on BBC Breakfast along with the charity's CEO David Barker, where they saw a report by BBC Radio's Newsbeat programme for the first time. They were surprised at the content of the report, in which a doctor linked junk food to developing Crohn's Disease.


On her popular blog Adventures of the Bag Lady, Rachel explains how the experience, and the aftermath affected her:

Within seconds of saying goodbye to [BBC Breakfast's] 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.

Rachel and Crohn's and Colitis UK CEO David Barker

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.

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.

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! 

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 (see below) to the doctor in question advising her to get media training, and hundreds if not thousands complained to the BBC! 

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.

Be sure to read the whole story over at Rachel's Blog


Here at Crohn's and Colitis UK, we worked tirelessly throughout the day and beyond to rectify this potentially damaging statement that the media picked up on. Read more about that here.

Junk Food and IBD... The Power of Social Media

A report for BBC Radio’s Newsbeat programme linking eating junk food with developing Crohn’s Disease has been described as ‘distressing’ and not backed up by hard evidence. We explain how the charity's members reacted and what we did behind the scenes to remedy the situation. You can also read a write up by Rachel Flint, who appeared in the interview on BBC's Breakfast programme here.

If you missed it, here is the original proramme:

The broadcast last week was then followed up by articles and broadcasts in the national media, even though there has been no definitive scientific link made to any particular diet or food additive as being a sole cause of the disease.

On our Facebook page and Twitter, hundreds of Crohn's and Colitis UK members and supporters voiced their concern and upset over the damage caused by the report.

The Charity was quick to respond to all the inaccuracies.

We ensured these misleading statements were corrected in the Daily Telegraph and Daily Mail, arranged for Professor Chris Probert from our Clinical Advisers team to appear on BBC News 24, ensured there was a change to the BBC website report, and took part in numerous regional radio interviews in addition to Radio 2’s Jeremy Vine show.

Professor Probert on BBC News 24:

A jointly-written letter published in The Times by David Barker, Chief Executive of Crohn’s and Colitis UK, and Dr Ian Forgacs, President of the British Society of Gastroenterology, explained why headlines such as the newspaper’s “Junk food diet to blame as number of youngsters with Crohn's disease soars” were simply wrong.

“This statement is not supported either by scientific data or mainstream medical opinion,” says the letter.

“The implication that thousands of young people with Crohn's Disease have somehow brought that exceptionally unpleasant condition on themselves is proving most distressing to them and their families. It is true that Crohn's disease is becoming more common which is only serving to make more urgent the already considerable research effort. The cause remains unknown yet it is plausible that environmental factors play a part and a number of theories have been proposed.”

The letter goes on to say that while eating junk food ‘may not be wise’, there is no data to support the view that eating crisps, burgers, and pizzas predisposes anybody to developing Crohn's Disease.

“To tell young people that they may have played a part in giving themselves an exceptionally unpleasant, potentially lifelong and quite incurable condition such as Crohn's Disease needs to be backed by hard evidence and that evidence is just not there,” it concludes.

We will continue to work hard on this issue and will update members in the next issue of NEWS. For more information on this subject, our booklet Food and IBD is available to download from our website or by post.

We Still Need Media Volunteers

Do you find living with IBD exhausting?... Would you like to share your story?

Crohn’s and Colitis UK is putting out a call for lots of member and supporter (recent) short stories (all ages) about how the symptom of fatigue/extreme tiredness has had a negative impact upon an individual’s ability to enjoy a normal social life, undertake study or stay in employment.

We will be looking to place some of these stories into regional press all around the UK during the Spring 2014, to raise awareness of Fatigue.70% of young people in 2007 when surveyed by the charity stated "Fatigue” as their most noticeable symptom. As a result we won £500,000 from the Big Lottery Fund to investigate Fatigue further.

This year, our Me and IBD survey of over 1,000 young people aged 16 – 29 indicated an even higher level of concern – even when not having a flare - 76% found it more of a problem than extreme pain or diarrhoea.

Our Fatigue project findings are due to be released in June 2014.

This is for any age, so feel free to share with others.

Please email media@crohnsandcolitis.org.uk for a Fatigue Media Volunteer form, or with any other queries.

Invest for Children donates £9k to Crohn's and Colitis UK

We would like to say a very big thank you to Invest for Children, a not for profit international organization whose mission is to help disabled children and young adults achieve a better quality of life.

They pledged £3 for every mile that James Prior rowed across the Atlantic whilst doing his epic 3,000 mile journey from Gran Canaria to Barbados in March.Their incredible £9,000 donation to the charity will make a huge difference to so many lives.

Thank you to both Investindustrial and Invest for Children for their phenomenal support for the charity and helping the Crewing for Crohn’s fundraising totals smash through the £100,000 target.

To find out more about Invest for Children, visitwww.investforchildren.org

#GetYourBellyOut campaign

Video Blogger Thaila Skye explains everything you need to know about the #GetYourBellyOut campaign which has been rapidly raising IBD awareness across social media.

What to do
You don't have to have Crohn's Disease or Ulcerative Colitis to take part in the campaign - EVERYBODY CAN GET INVOLVED! 

Take a photo of your tummy and share it on Twitter, Facebook or Instagram, adding the #GetYourBellyOut hashtag.
If you don't want to share a photo of your tummy (but still want to get involved), you can go straight to making a donation by Text or online.For example if you wanted to donate £3, then you would:
If you can't make a text donation, then you can donate online instead at:
All donations will go to Crohn's and Colitis UK.
Search for #GetYourBellyOut on Twitter, Facebook and Instagram or visit these pages/groups:
There have been many blog posts promoting the campaign, here are just a few of them:

Blogs

• Sahara88UK: http://sahara88uk.blog.com/2014/03/31/the-rise-of-getyourbellyout

• Colitis & Me: http://colitisandme.blogspot.co.uk/2014/03/getyourbellyout.html

• Colitis Ninja: http://colitisninja.blogspot.co.uk/2014/03/getyourbellyout.html?m=1

• Brink of Bedlam: http://brinkofbedlam.co.uk/2014/03/31/get-your-belly-out-for-crohns-and-colitis

• Acousticappraisals: http://acousticappraisal.blogspot.co.uk/2014/04/more-details-of-inspiring.html

How to donate
Send a text message saying IBDA99 and the donation amount to 70070.Text IBDA99 £3 to 70070www.justgiving.com/teams/IBDAwareness

More information

• Facebook Page: facebook.com/getyourbellyout

• Facebook Group: facebook.com/groups/262578540582917

• Twitter: twitter.com/GetYourBellyOut

World IBD Day: What's your story?

Monday 19th May is World IBD Day. It’s a day for us to take action, stand up and support the 260,000 people in the UK, and millions more worldwide living with Crohn’s Disease and Ulcerative Colitis.

• We want to raise as much awareness as possible for everyone who suffers from these ‘invisible’ illnesses which is why we’re asking you to share your journeys with IBD.
• 
  
• In the run up to World IBD day we would love for you to send us your stories, along with a photo of you holding a piece of card with your name, age, location in the world, IBD type and a sentence or key word/s about you and IBD.
• 
  
• If you don’t feel like taking a photo, you could post one you feel sums up you and IBD.
• 
  
• Whether you have Crohn’s or Colitis, or you’re a loved one of someone who does, sharing your journey with IBD and what it means to you, you will help make them more visible.

Post your stories and photos to your own Facebook page (Don't forget to tag us!), as well as our Facebook page. If you prefer you can also email your pics to webmaster@crohnsandcolitis.org.uk

The more people they reach, the more awareness we can raise.

#WorldIBDday #myCCUKstory

• Please also join and invite others to our World IBD day event on Facebook

Crohn's and Colitis UK Fundraiser Walks 2014

It's not long to go now until the 2014 Crohn's and Colitis UK Fundraiser Walks get underway. They are taking place in London, York, Rutland and Edinburgh. You can even take part on bicycle in Rutland!

Our celebrity Ambassador, Lewis Moody, tells us more about the walks:




For more information and how to book your place on the walks (hurry, there's not long to go), please visit the main Crohn's and Colitis UK website.

This year there is the added bonus of a 'Walk Your Own Way' video and PDF. This is for people who aren't able to take part in the larger organised walks, but who would like to take part in one. Basically, it's your guide to doing your own walk to raise funds for Crohn's and Colitis UK. Never thought about doing something like that? Well, watch the video and find out how:




Thanks for reading and we hope you are able to participate in some way.

Guest Writer - Joey

It's been almost 6 years since I was diagnosed with Crohn's Disease. I vividly remember the first time I started to feel a dull ache every now and again from a part of my body you never want to feel pain - you guessed it, the anal region. I wasn't too concerned at first as I thought it may just be part of growing up, but I guess I was naive. 

At the age of 16, everyone thinks that they are invincible when they are that young. It was probably weeks maybe even months before I actually plucked up the courage to tell my parents about it, as you would have guessed I was very embarrassed, I hadn't even said anything to my closest friends but the pain was becoming quite unbearable and it just wasn't going away. I knew I had to do something.

The doctors were originally very vague in telling me what was actually wrong with me and couldn't actually give me a definite answer on any of the questions I had, which I would later find out was one of the major factors in why it would get so severe. Had they been able to diagnose it sooner I don't believe my condition would have got as bad as it did.


After making numerous visits to my GP they came to the conclusion that it was an ingrowing hair which had caused an infection. Boy, could they be any more wrong? As you can imagine stress levels were high. At this period in my life I was in the middle of my GCSE's and I would later find out that one of the main triggers of Crohn's is stress. Things were getting worse and I still did not know why. Coming away from the doctors surgery very unhappy and dissatisfied with their diagnosis me and my parents discussed that the only other option would be to make an appointment at the Gastroenterology department in Hereford Hospital as the pain was starting to get rapidly a lot more difficult to deal with. 

It was soon after this that eating was starting to become a real issue for me as I just stopped. I couldn't even explain why I just felt full all the time and couldn't even stomach my mums Sunday dinners which showed just how serious the problem was who can refuse their own mums Sunday dinners! It was at this point that my closest friends at school were starting to see a real change in my character as well as my physical appearance, as most people know I've always been quite a stocky lad and my weight was dropping at an alarming rate down to nearly under 9 stone. This was increasingly frustrating for me as I wanted to let my friends and classmates know what was happening but I didn't even know myself. But I was about to find out.

Of course I was extremely nervous on the morning of my hospital appointment what young lad wouldn't be? But I was in such pain that I just wanted a resolution to the problem. The consultant examined me and deemed everything okay for a small routine operation to remove some infected skin which I was told would be the end of my problem. It was only then that I happened to mention that the pain was coming from a different area also (a smaller lump that had appeared) . On re examination the consultant then looked at both me and my mum and told us he had made a mistake. We looked at each other directly in the eyes thinking exactly the same thing, Cancer. To my relief he immediately quashed this fear but he did diagnose a serious chronic condition that we knew nothing about. This was the first time I had ever heard of Crohn's Disease.


The operation still went ahead but they decided to use a camera to try and investigate the extent of the inflammation. I would later find out that this was inconclusive and they didn't actually find out anything they didn't already know. Things accelerated so rapidly after this as what I didn't know was an abscess was forming. At this point I was only really attending school to sit my actual GCSE's and I would like to thank Fairfield High School for the understanding they showed allowing me to take comfy cushions into my exams as well as jelly babies and other sweets to keep my energy levels high as the extreme fatigue caused by the condition was something I had never experienced before. 

In the days after the exams things really started to take a turn for the worse as the abscess was about to burst. The pain at this point was so severe that I remember saying to my mum I wanted to punch a brick wall so hard that at least it would change the focus of pain even for a couple of seconds. I was so angry with it I couldn't think or do anything else. I was admitted to hospital immediately and put straight onto morphine to try and control the pain and after a few days an operation was finally carried out. It wasn't until I had awaken from the surgery that I knew the extent of what was needed to relieve my symptoms. 

The operation left me with an open wound that would require packing and dressing every

day for many weeks. The nurses at this point tried to show my mum how to dress this for me but after taking one look at the damage that they had left she fainted right there in the hospital ward and needed oxygen herself!.It's safe to say she wasn't fit to do this and the job was left to district nurses and this was one of the worst experiences of my life. Imagine at the age of 16 having to have nurses intrusively everyday looking at the most private areas of body, especially when they were young and good looking!


Due to the inflammation in my bowel, an abnormal passageway had been caused. This was otherwise known as an anal fistula. This is essentially a small channel that develops between the end of the bowel, known as the anal canal or back passage and the skin near the anus, where obviously waste leaves the body. My problem was that the fistula was branching out into more than one channel. There was only one way to stop this and this was to insert a number of small drains into the passageways to help divert the waste and stop the build up. This would prevent another possible abscess. 

These drains were to stay with me for around 9 months and I have never told anyone this but I had to use pads walking around to collect any lets say..unexpected gifts. Having placed me on steroids the combination of them and the drains, finally got the condition under some control. This was never a permanent situation and whenever they tried to reduce the dosage of steroids, I would see myself falling ill again. This would happen over and over for a good 12-18 months. There was no real way to get the Crohn's under control. At my worst I was taking almost 100 different tablets a week. 


The most frustrating thing for me and my family was just nothing worked. Any time there was a bit of hope the Crohn's would flare up again. I tried to live as normal a life as possible. At this point, I was enrolled in Hereford Sixth Form College and was trying to get on with my education, but obviously I was incredibly embarrassed by my condition and only a select few of my closest friends knew what I was dealing with right through Sixth Form. They know who they are, and I thank them. Eventually after 3 years of unsuccessful treatment, I was trialled on a brand new, very expensive drug called Infliximab. 

Since August 2010, I have been regularly attending the hospital every 8 weeks. I have this drug administered through an intravenous drip. This combined with a daily drug called Azathioprine and regular blood tests has allowed me to steadily gain weight again, eat what I like and generally stay fairly healthy. I still suffer from the fatigue and some other minor issues but at least for the moment my quality of life has much improved. I have been told that the Infliximab is incredibly strong and nobody knows the real long-time side effects, so it is not an option to stay on this permanently. 


I really don't know what the future holds for my disease, and I hope that when I am no longer able to take this drug that there is something new for me take instead as I do not want to go back to the way I was almost 6 years ago. Although this could happen, I just try not to think about it. Despite the severity of this condition, and I admit at times it has got me really down and  quite depressed. I try to be as positive about it as possible. 

It hasn't stopped me in life as I am in the last few months of a business and management degree at Cardiff Metropolitan University, something I could never see myself doing a few years ago. It goes without saying I appreciate the support and understanding of my parents and friends about my condition but I would like to say a huge thank you to my sister Katie as she has written a few pieces as well as a radio appeal on Crohn's Disease and is extremely understanding and supportive of my condition.  


Crohn's disease is a very debilitating and embarrassing disease to live with. I have never spoken about what I have gone through before as to be honest, I never really knew the true meaning and just tried to ignore it. As there is currently no cure for the disease, I am purely writing this to help raise awareness in the hope that there can one day be a cure to stop people going through what I have and what the thousands of other people in the UK are going through- many who have had it a lot worse than me. 


Thanks for reading,
Joey

You can follow Joey's story at his blog: My Crohn's Disease