Where are we now?

Crohn's disease and ulcerative colitis are inflammatory bowel conditions which can make life almost intolerable for sufferers. Yet, despite affecting an estimated one in 200 people in the UK between them, inflammatory bowel disease (IBD), as the conditions are jointly known, remains one of the major unsolved problems of modern medicine.

Symptoms

Both Crohn's disease and ulcerative colitis cause symptoms which include chronic diarrhoea, severe abdominal pain, weight loss, extreme tiredness and psychological problems.

For both conditions, symptoms can vary significantly and sufferers may experience periods of feeling relatively well. But when it strikes, IBD can wreak havoc on people's lives.

Crohn's disease most commonly affects the small intestine, although it can occur anywhere along the tract from mouth to anus causing inflammation, ulcers and scars. Sufferers may experience symptoms of other inflammatory conditions which affect the eyes, skin and joints.

Ulcerative colitis usually affects the rectum and the large intestine, again causing inflammation and ulcers. Sufferers' diarrhoea can be bloodstained. The condition may also cause inflammation of the eyes, skin and joints.

As well as the pain and fatigue, IBD sufferers often feel humiliated by aspects of the disease, such as urgent diarrhoea, and some are so badly affected they cannot work and shun social situations.

Treatment

Treatment for IBD is mainly through drugs such as steroids which help to reduce the inflammation but many sufferers of IBD will require surgery at some stage to relieve narrowing of the digestive tract or to remove damaged parts of the gut.

180,000 sufferers in the UK

Estimates vary between experts about the numbers of sufferers in the UK but the National Association for Colitis and Crohn's Disease (NACC) claims that around one in 1,200 people are affected by Crohn's and up to one in 600 have ulcerative colitis. Together, that adds up to an astonishing 180,000 people in the UK. Thousands of new cases are thought to seek medical help every year.

But these figures are little more than educated guesses based on whatever research and anecdotal evidence is currently available.

This is because IBD is not reportable and therefore the UK Government does not require health professionals to report back to them on the numbers of sufferers they treat.

As a consequence, the real scale of the disease is almost as much of a mystery as the disease itself. Action Medical Research wants this to change because until doctors are compelled to report cases of IBD, we will continue to have no idea of the true extent of it and therefore, what level of resources should be channelled into tackling it, nor will we have access to key areas of data which might throw further light on the condition such as which groups, if any, appear most vulnerable.

Where are we going?

There is currently no consensus between experts on precisely what causes IBD and several theories have been put forward over the years.

There is currently no cure although a number of studies are underway worldwide to investigate possible causes and treatments.

Research

One of the most compelling arguments for the cause of Crohn's disease in recent years has been the claim of eminent scientist Professor John Hermon-Taylor that a bacterium called Mycobacterium avium sub-species paratuberculosis (MAP) is the culprit.

MAP is known to cause a chronic inflammation in the intestines of cattle, called Johne's disease, and this association was first discovered more than 100 years ago. Professor Hermon-Taylor, from St George's Hospital, London, believes that MAP can be passed on to humans via milk and has suggested that the temperature of the pasteurisation process is simply not hot enough to kill off the bug.

The professor's theories caused considerable excitement and keen interest in learned circles and Action Medical Research, which prides itself on its independence and freedom to select its own projects, was able to back his vital research into this area.

Over the years, the charity has awarded almost £1 million to Professor Hermon-Taylor's and his team investigation into the cause of Crohn's and work towards the development of a state-of-the-art vaccine to treat MAP-infected Crohn's sufferers.

Professor Hermon-Taylor's team has published important findings which showed that MAP was present in the vast majority of Crohn's sufferers involved in their study.

The team's work has contributed massively to the debate and opened up several lines of inquiry and a number of other laboratories around the world have also detected MAP in the bowels of Crohn's disease sufferers.

A range of causes - both genetic and environmental

In 2002, the National Association for Colitis and Crohn's Disease (NACC) commissioned a panel of experts to look specifically at the relationship between MAP and Crohn's.

The panel, reporting back in 2004, said its findings leant weight to the view that Crohn's could be not one, but a collection of different conditions with a range of causes including genetic and environmental.

The panel concluded that the case for MAP being involved in the causation of Crohn's disease is so far unproven but suggested further research to see if there are certain groups of Crohn's sufferers whose condition is caused primarily by MAP.

MAP and Crohn's

In 2004, the National Expert Panel on New and Emerging Infections, which advises the UK Government, agreed to set up a working group to identify what further studies need to be done to get a definitive picture of the link - if any - between MAP and Crohn's disease.

Meanwhile, the government's environment and food department, Defra, and the Food Standards Agency have already issued precautionary guidelines to reduce the incidence of MAP getting into milk supplies.

The UK Government is clearly taking the matter seriously and a survey co-ordinated by the Veterinary Laboratories Agency has recently been commissioned by Defra to look at the prevalence of Johne's Disease in the UK dairy herd. The survey will start in 2005 and take about two years to complete.

The Drinking Water Inspectorate (DWI) commissioned a study in 2005 by the University of East Anglia which concluded that consuming water, milk or dairy products potentially contaminated with MAP did not appear to increase the risk of developing Crohn's disease.

Intriguingly, the study also found a statistical link between eating meat and developing Crohn's.1

Both Defra and the DWI are urging caution in interpreting this finding and are not recommending that sufferers stop eating meat.

However, the Food Standards Agency is referring the report to its scientific expert committee and will then decide if the findings merit further investigation.

Defra is also working in a partnership led by the National Beef Association to raise awareness, and reduce the incidence, of Johne's disease in cattle. Although Defra is mainly concerned with the diseases financial impact on the dairy business they are also looking to reduce the level of MAP in both milk and the environment.

The Food Standards Agency and Department of Health suggest that members of the public who are concerned about the possible risks from MAP could change to UHT milk.

Other studies

Other studies into IBD includes work following on from the discovery of a gene called Nod2 which, if defective, could make people susceptible to Crohn's disease 2 opening up the possibility of future gene therapy to treat the disease, and a controlled trial of anti-MAP therapy in Australia.

Doctors in the US are hopeful parasitic worms may help to alleviate the symptoms of Crohns after initial trials involving a small number of patients showed promising results 3, and in 2006, the British Society of Gastroenterology is staging a conference on IBD. 4

What are we doing?

In July 2005, a young and talented doctor was awarded more than £160,000 by Action Medical Research to study IBD in Scotland's children.

Latest research

Dr Johan Van Limbergen, who was born in Aalst in Belgium, is based at the Gastrointestinal Unit at the Western General Hospital in Edinburgh. His work will be looking at the genetic make-up of patients suffering from IBD in Scotland to see why they may be more prone to the disease.

Children from across Scotland, who are affected by IBD, will be studied in a collaboration between the Sick Children's Hospitals of Edinburgh, Glasgow, Aberdeen and Dundee.

Dr Van Limbergen hopes to find out more about the genes involved in the development of IBD, which could lead to new treatments for patients.

Scotland

Scotland has some of the highest numbers of children suffering from IBD in the world and figures are continuing to rise. Findings from Dr Van Limbergen's work could help shed light on the possible environmental and genetic factors that are responsible for triggering IBD.

Ongoing commitment

The charity's decision to support this research is part of its ongoing commitment to pursuing answers to this devastating disease. Action Medical Research has a history of listening to the finest minds in medical research and helping them test their theories and open up lines of inquiry that take key health debates forward.

We feel strongly that while there are so many unanswered questions about IBD, it is our duty to press for an urgent and more co-ordinated approach to overlapping areas of research.

We will continue to monitor the findings of trials and research projects by other organisations with an open mind to inform and help structure our own work.

Our drive comes from our desire to help all those suffering from IBD to find help for their symptoms and, we hope, an eventual cure.

Support the Campaign

People with ulcerative colitis and Crohn's experience pain, embarrassment and extraordinary disruption to their quality of life. In extreme cases, IBD can be life-threatening.

As we have little idea how many people are affected by IBD, we have no access to critical information that may help us find treatments and cures for the disease. Nor does ignorance of the scale of the problem help government and medical professionals to plan accurately for the resources and treatment that need to be channelled into it, nor do we have any real idea of the range of symptoms ie how many people suffer relatively mild effects and how many are virtually incapacitated by it.

In addition, sufferers may require long-term and frequent use of drugs to control their symptoms. A survey by the NACC in 2003 showed that of 3,000 IBD patients, more than half needed 12 or more prescriptions a year and many routinely pay in excess of £150 a year.

Therefore, Action Medical Research is calling on the UK Government to:

• make IBD reportable to bring an end to the guess work that surrounds the scale of the disease
• scrap prescription charges for those diagnosed with this long-term condition
• establish a single working party to draw together the many separate research findings of all groups examining the possible causes and treatments for IBD so that we can bring an end to the piecemeal approach to this condition. Various strands of evidence need to be evaluated together to avoid missing parts of the jigsaw that together might finally give us the real picture that solves the puzzle. Action Medical Research will strive to continue funding our own high-quality research into this area with the aim of preventing the disease and improving treatment for those affected.

Footnotes

1. www.defra.gov.uk Water Clear in Crohn's Risk Study July 2005. Full report www.dwi.gov.uk A Case Control Study Investigating Drinking Water & Dairy Products in the Aetiology of Crohn's Disease - A Possible Role for Mycobacterium avium paratuberculosis - The CMAW Study Final Report Date: 15th July 2005, pages 6, 64, 72, 74, 75, 76. [back to main article]

2. www.uchospitals.edu/news In 2001, two separate teams, one from the Fondation Jean Daussett CEPH in Paris, France, and another combining the University of Michigan and the University of Chicago among others in the United States, reported that mutations of Nod2, a gene involved in the immune system's initial response to bacterial infection, significantly increase the risk of Crohn's disease. [back to main article]

3. University of Iowa 'UI Study Finds Worm Eggs Help Patients With Severe Bowel Disorders' 2004. [back to main article]

4. www.bsg.org.uk - Future Meetings IBD Symposia 21-23 March 2006. [back to main article]