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

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.”

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.

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. These may also take the form of interviews.

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 May/June 2014.

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

Please download the Fatigue Media Volunteer form and email  it back to us.