IBD is a lifelong, incurable condition that takes two main forms – Ulcerative Colitis and Crohn’s Disease. The cause is still unknown, although research continues to shed light on a number of factors including genetic makeup and environmental factors. Its symptoms can include excruciating abdominal pain, chronic and uncontrollable diarrhoea, extreme fatigue, stomach cramps, dramatic weight loss, skin rashes and more.
Treatment has improved in recent years thanks to research, however the effectiveness of treatment can still be cruelly random. It can take some time for patients to receive a diagnosis, and then even longer for them to find a treatment that works by a process of trial and error.
In cases when no effective treatment can be found, or a flare up of IBD is extremely acute, surgery is necessary. In extreme cases this can result in a stoma being formed. This can be a daunting prospect however many people who undergo stoma surgery for IBD find their quality of life radically improved by the operation. Fighting stigmas around having a stoma bag is an inspiring cause that Bowel Research UK has long championed before and after our merger.
The prevalence of IBD in the UK is among the highest in Europe. 300,000 people in the UK live with IBD – 1 in every 210 of us.
The number of people in the UK with IBD is increasing – especially among children and young people. Most diagnoses are made in teens and early twenties, although the disease can strike at any age.
At some time in their life around 20/30% of patients with Ulcerative Colitis will require surgery, while about 70% of people with Crohn’s are likely to require this option.
Studies have consistently shown an increased risk of bowel cancer in patients with IBD. In Ulcerative Colitis the risk is considered to be up to twice as high.
The average lifetime cost to the NHS of a patient with IBD are equivalent to those for someone with heart disease or diabetes. The average annual cost for a UC patient is thought to be around £3,084, while in Crohn’s this rises to £6,156.
Evidence suggests Crohn’s Disease is more common in Ashkenazi Jewish people, most likely due to a genetic predisposition.
You can learn even more about IBD at the Royal College of General Practitioners’ IBD toolkit, produced in conjunction with Crohn’s & Colitis UK.
BRUK research response
Our most potent weapon against IBD is research, which offers hope to patients and their families. Information about all our work to improve the lives of people with IBD can be found on our research hub. Some highlights include:
We have recently funded research aiming to develop a blood test that spots the early signs of bowel cancer in IBD patients.
The first ever study led by a patient in our field looks at the experiences of women with a stoma during pregnancy and childbirth, with the aim of developing national guidelines (jointly funded by Ileostomy & Internal Pouch Association & Kingston Trust).
Groundbreaking research into the gut microbiome is hoping to shed light on why bacteria in the gut play a role in the course of Crohn’s disease.
Our guest blog & video interview with the Association of Medical Research Charities highlights the impact of our funding on the lives of people affected by Crohn’s Disease.
Our funding helped to launch a major national trial to understand if and why ulcerative colitis can be eased by removal of the appendix.
Our unique patient and public involvement programme, called Take PaRT, is bringing together IBD patients from all over the country. Take PaRT empowers patients not only through providing a network of peer to peer support and connection, but by putting patients behind the wheel of research studies – playing a vital role in the design and delivery of life-changing research at every stage.