Patient research day helps lifts the fog of diverticular disease
Diverticular disease is a common problem.
Although present in only 10% of people under 40 years of age in the UK, over 50% of the population aged over 50 years are affected. This rises to 70% by 80 years of age*
The consequences can be devastating – but most people have never heard of it, and it remains something of a mystery even to those who have it – and their Doctors.
That’s why BDRF has awarded £30,000 to launch an international research project to better understand diverticular disease. The team have now recruited over 130 hospitals, covering every continent!
DAMASCUS Study almost set for launch, database ready and passwords will be sent out soon. Time for final checks with audit and ethics depts, over 130 sites globally, thank you to all ! #colorectalresearch #diverticualrdisease @BDRF1 @Dukes_Club pic.twitter.com/8ZWARQQ02K
— Damascus (@DAMASCUS_Study) January 6, 2020
Last week, the Royal College of Surgeons of England played host to an event bringing patients & the research team together. It proved a fascinating & rewarding experience for all concerned.
The first session of the day focussed on symptoms – normally an easy area to define, but surprisingly complex with diverticular disease. Many patients were initially diagnosed with other bowel problems, due to the broad range of symptoms. Most patients had never heard of it until diagnosis, so never suspected they might have it.
Some patients suffered sudden, agonising pain resulting in emergency hospital admission, while others saw a more gradual build-up. Others had no symptoms at all – only diagnosed alongside other conditions.
“I feel like I’m living in a fog”
Discussion moved on to the consequences & impacts on daily life. These were enormous – the overwhelming themes were crippling uncertainty, fear and severe effects on quality of life.
One patient told us ““The fear of the unknown was the hardest part, it was out of my hands and I had no control over the situation.”. Another said “I feel like I’m living in a fog”.
These sentiments will doubtless feel familiar to patients affected by many other forms of bowel disease – from IBD & IBS, to cancer & the side effects of treatment like LARS.
Patients described constant anxiety about knowing where the nearest toilet is, fear of going out in public and of when the next flare-up could strike.
Diet was also a minefield – sometimes there was a clear pattern between diet & flares, but for others there was no rhyme or reason.
The consensus was clear – diverticular disease can take over and ruin lives, and we need better ways to fight it.
“I put a lot of trust in my surgeon being able to do what they said they could do”
The third session focussed on treatment – namely the variations & in some cases lack of effective treatment.
Once again, a broad range of experience was on show. Some patients had gone through numerous courses of antibiotics, others had surgery, and others no treatment at all.
For many in the room, the problem had become severe enough to need drastic surgery. Often, this resulted in a temporary or permanent stoma. Perhaps contrary to some expectations – even those of the patient themselves, these had restored rather than reduced quality of life. Some had turned down surgery to reverse their stoma – so great had been the positive impact on their daily lives.
Information about the options when facing treatment was a major theme of these discussions. Most patients felt they had been crying out for more knowledge that simply wasn’t there. One of the surgeons present said “Often we’re asked, ‘what would you want done if it were you?’, to which the answer is often ‘I just don’t know'”.
Timing of being offered surgery – often earlier than at present – emerged as an important concern. Broadly, patients wanted to feel more in control, and the research team gleaned some vital information to feed into the study design.
Screening, genes & data sharing – what does the future hold?
Proceedings ended with a discussion of research methods and ideas.
It was an incredibly inspiring discussion, with unanimous agreement that research was vital – and huge willingness to participate out of a desire to help others. Patients would not hesitate to donate what was required to assist researchers – from stool samples to colon biopsies and blood tests.
The dream was to see a simple blood test developed, or a method of screening for diverticular disease, that could pick it up early and enable those affected to manage it.
Huge passion for discovering the root causes was also clear – genetics were thought to play a part, but a better understanding of the many complex issues at play was considered a huge priority.
BDRF would like to thank every single participant in the day. We’re very excited for the potential of this work to shed light on a problem that is all too common, but still so poorly understood.
Together we will make strides in furthering the research in order to improve treatment and people’s lives.
If you would like to support our work into researching diverticular disease or indeed any other bowel disease – a donation of £10 per month could help us cover some of the costs to stage future events like this.
You can set up a monthly donation quickly and easily here on our website – many thanks in advance for your consideration.
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