Responsible use of patient data is vital to advance research on a large scale. Now, a new data research project is putting patients at the centre.

You might have never heard of Crohn’s disease and ulcerative colitis, but you will know someone with these inflammatory conditions – they affect over 500,000 people across the UK. Symptoms include agonising pain, extreme tiredness and lifelong gut problems. There is no cure. They also cost the NHS billions to treat. Now, there is hope that a new approach to patient data will accelerate the development of better treatments.

Agents of change

Sarah Sleet, CEO at Crohn’s & Colitis UK says, “We see the impact of these conditions – disrupted education and work, relationships under strain, and emotional difficulties. Many people will go years cycling through drugs to see what works, hoping it stays working. For too many, radical surgery becomes the only option.”

The Crohn’s and colitis community now has the potential to turbo charge change through the most valuable commodity in research – their data.

Working with Health Data Research (HDR) UK, Gut Reaction is addressing this problem – bringing data together in a new and safe way.

Prof Miles Parkes

Stronger together

According to Prof Miles Parkes, Clinical and Academic Lead of Gut Reaction – the Health Data Research Hub for Inflammatory Bowel Disease, “The huge variation in outcomes experienced by patients results from the interplay between genetics and environmental factors. A key way to better understand this is to look at data from thousands of people – their DNA, physical characteristics, response to treatment. Currently data is kept in silos across the NHS and research centres making it impossible to see the full picture. Working with Health Data Research (HDR) UK, Gut Reaction is addressing this problem – bringing data together in a new and safe way.”

Managing the challenges patient data

Sleet says: “The opportunity for good from Gut Reaction is enormous but people rightly want to know how their data is used. With patient voices and power at the heart of Gut Reaction, this is more open and transparent than ever before.”

The power of people

Patients themselves have helped to design consent information because everyone should know exactly what they are signing up for. They’ve improved the thinking behind data access, underpinning it with principles people really care about. For example, marketing and insurance companies are out because data must be used for public benefit, not pure profit, and should not increase inequality.

“My life has been profoundly affected by Crohn’s and I am desperate to see better treatments,” says Rosanna Fennessy, Gut Reaction patient representative. “But not at any price. Gut Reaction is our chance to show that patients can set the rules for what is acceptable in the use of health data in research.”

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Actor Sacha Dhawan shares his experience of life with Crohn’s disease, learning to ask for help and addressing stigma around emotions.

I have Crohn’s disease, it’s taken me over ten years to accept those four words. In fact, being able to celebrate the highs as well as the lows has given me the most amazing sense of freedom.

 I was diagnosed with Crohn’s in 2006 and without social media I didn’t feel inclined at all to engage with others like me. In fact, I didn’t make any effort to find out more about this chronic disease, which along with colitis affects an estimated 500,000 people in the UK.

I was prescribed medication, so I would eventually get better right? And I did, I went into ‘remission’ for several years, or so I thought. What I hadn’t prepared myself for were the long term effects on my body, both physically and emotionally from living in complete denial.

Little did I know then that one call to Crohn’s & Colitis UK (which I’m now a proud ambassador for), would have potentially saved years of damage to my bowel. For me, it was easier to just suffer in silence.

Making that first call and asking for help was the single-most rewarding moment of my life so far. Not only has it had a positive impact on my Crohn’s, but it’s given me the opportunity to see life that bit more clearly.

Helping to address the stigma  

Looking back, I realise how unconnected I was, not only to the disease, but to myself. I put all my energy and focus on the bowel itself with sheer frustration because it was tangible; the pain was physical, tender to touch, and I could see the scar tissue damage in scans, but what about the thing that couldn’t be seen?

There is scientific evidence about the gut-brain axis, but the stigma attached to talking about your emotions and feelings, especially for us men, seems to outweigh the benefits. I have battled with this stigma for many years, feeling that by opening up about my struggles with mental health I had somewhat failed, so when I first got help, it was inconsistent.

Consistency is key, whilst daunting, making that first call and asking for help was the single-most rewarding moment of my life so far. Not only has it had a positive impact on my Crohn’s, but it’s given me the opportunity to see life that bit more clearly.

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Former England Rugby captain, Lewis Moody was diagnosed with ulcerative colitis in 2005. Opening up and talking massively helped and he urges young fans to do the same.

When Lewis Moody was diagnosed with ulcerative colitis, one of the two main forms of inflammatory bowel disease, he kept it a secret from his coach, his teammates and his fans. But over the years Moody found that it’s good to talk and opening up eased the psychological impact. He may have had to make some changes but that didn’t stop him living out his dream on the pitch.

Dealing with the impact

“Colitis impacted my muscle mass, appearance and one time during a flare-up I lost 10kg in two weeks. For a sportsman in the public eye, that is tough to deal with. That said, sometimes colitis can be invisible. Particularly the mental health impact and that’s what I struggled with the most.”

I loved my career so much and feel so privileged that I found a way to cope to keep on playing. Anyone with Crohn’s and colitis reading this – you can do the same.

Taking the weight off

“I wasn’t coping, I had to tell my friends. Telling my coach was a huge weight off, then each time, it was another weight off. Generally, people are kind and caring. If you have Crohn’s or colitis and do just one thing – I urge you to tell someone.”

Finding the humour

“Everyone has different coping mechanisms, but sometimes you’ve got to laugh. We joked at the club if I rushed off, it was for an emergency toilet break. The dark humour really helped.”

Managing diet

“For people with Crohn’s and colitis, one person’s diet can vary massively from another’s. But for me, being strict and slowly reintroducing foods to find out what irritated me was a big turning point in reducing the impact. I loved my career so much and feel so privileged that I found a way to cope to keep on playing. Anyone with Crohn’s and colitis reading this – you can do the same. Talk, find out what works for you and don’t let it stop you from doing what you love.”

Lewis Moody is a supporter of Crohn’s & Colitis UK

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The gut-brain connection refers to the two-way communication system between the gut and the brain. Specifically, this axis is the neurological and biochemical connection between the nervous system of the intestine and the central nervous system.

The microbiota-gut-brain axis is an exciting field of study that we’re continuing to learn more about every day. A large body of research has supported the presence of a pathway of communication between the gut and the brain, fine-tuned by gut microbiota. 

There are physical and chemical connections between the gut and the brain as millions of nerves and neurons pass between these two areas. Neurotransmitters and other chemicals produced in your gut also affect your brain.

The human brain consumes 25-30% of the body’s energy so it comes as no great surprise that how we fuel our bodies and the digestive process impacts brain function.

Impact of digestion on brain function

The human brain consumes 25-30% of the body’s energy so it comes as no great surprise that how we fuel our bodies and the digestive process impacts brain function. It is why the gut microbiome affects the immune system; the nervous system, an individual’s behaviour, ability to cope with stress, their mood and issues such as anxiety and depression.

A great example to illustrate the connection comes from the saying ‘butterflies in the stomach’. This phrase is intended to highlight how a strong emotional reaction in the brain can impact a physiological response in the gut. A diagram below illustrates the interconnectedness of the brain and gut.  

The changing brain 

Neuroplasticity is the brain’s ability to change over the course of an individual’s life. Research studies have shown us that the brain can shape and structure over the course of time. We have also seen through studies that new synapses can form (synaptogensis) and new brain cells can grow (neurogensis).

It is now known that the reciprocal communication between gut and brain involves neurological, metabolic, hormonal, and immunological signalling pathways and disturbance in these systems can result in altered behaviour.

For example, as we know gut inflammation is associated with changes in gut-brain interactions. Studies have shown there is a high connection between inflammatory bowels and anxiety which has led us to have a greater awareness of ensuring when we have good gut health, we feel better and perform better too. 

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More than 12 million people in the UK suffer from irritable bowel syndrome (IBS), a functional disorder of the bowel. Alison Reid, Chief Executive of The IBS Network, explains more.

What causes IBS? 

There is no specific cause for IBS. But the most common risk factors are an attack of gastroenteritis, a traumatic or upsetting event, and courses of powerful antibiotics. 

What are the symptoms? 

Symptoms can include abdominal pain, bloating, increased flatulence, diarrhoea, constipation, mixed diarrhoea/constipation and passing mucus. Other symptoms include lethargy, nausea, backache and bladder symptoms. IBS is a very individual condition and symptoms will vary for each person. 

What can trigger symptoms? 

Triggers will be a combination of the food that we eat and the amount of stress in our lives. Eating foods high in fat, consuming alcohol, large portion sizes, eating too much fruit with stones and certain vegetables, fizzy drinks, and high fibre foods. 

Not getting enough sleep, eating on the go, rushing meals and having an erratic eating pattern will also very likely negatively impact someone living with IBS and cause a flare up of their condition. 

There is no cure for IBS and no one treatment that works for everyone. The key to living well with IBS is self-management.

Get a diagnosis from your doctor 

If you are experiencing IBS symptoms, it’s important that you speak to your GP. 

Do not self-diagnose and start to treat what you think might be IBS before receiving a diagnosis from a medical professional, as you may be at risk of other conditions with similar symptoms going undiagnosed. 

If you are diagnosed with IBS, ask your doctor to refer you to a registered dietitian. Whilst waiting for your appointment, try to identify your triggers. The IBS Network has a 12-week wellness diary and online symptom tracker to help you identify and manage your symptoms. 

How to treat IBS 

There is no cure for IBS and no one treatment that works for everyone. The key to living well with IBS is self-management. Once you have a better understanding of what is happening in your body you will be able to explore what treatments work best for you. By taking control of your condition, you will already have started to feel better psychologically. 

Treatments include dietary and lifestyle changes; psychological therapies (talking therapies) and medications (see your GP or pharmacist for advice). These may be used together or on their own depending on the possible cause and severity of your IBS.

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The coronavirus pandemic has had a huge impact on bowel cancer services, with screening, diagnosis and treatment delayed. It is more important than ever that people with symptoms visit their GP.

Bowel cancer is the fourth most common cancer in the UK, with around 268,000 people currently living with the disease. Someone is diagnosed every 15 minutes. Sadly, around 16,000 people die from the disease each year, making it the second biggest cancer killer. However, this shouldn’t be the case as it’s treatable and curable, especially if diagnosed early, when treatment has a much higher chance of success. 

Screening and other tests were paused for some months at the height of the pandemic, leading to delays in diagnosis. Many people have also seen their treatment or surgery postponed or cancelled. 

Years of life will be lost 

We are incredibly concerned about years of life being lost to the disease because of this disruption to cancer services. A recent report from the Institute for Public Policy Research found people with the disease are facing poorer outcomes, after essential screening and diagnostic services were reduced by up to 70%, and treatment fell by 40%. As a result, it’s estimated that five-year survival rates for patients diagnosed with bowel cancer this year are set to return to those seen a decade ago.

We cannot say this strongly enough: if you have any symptoms of bowel cancer, please don’t put off contacting your GP.

NHS staff are working flat out to restore cancer services to pre-COVID-19 levels, and we are grateful for everything they do. But pressures on the NHS continue, particularly with the current wave of COVID-19 we are experiencing. The NHS needs to be supported with a fully funded action plan which clearly outlines how the backlog will be addressed.

Visit your GP if you have bowel cancer symptoms 

Although people may be waiting longer to see a specialist for suspected cancer, we cannot say this strongly enough: if you have any symptoms of bowel cancer, please don’t put off contacting your GP.  

We’re worried people are staying away from their doctor because they don’t want to burden the NHS or are worried about catching coronavirus. While it’s probably nothing serious, your symptoms could be a sign of something that needs treatment. If it is cancer, finding it early could save your life. Please don’t wait another day. 

Symptoms of bowel cancer can include bleeding from your bottom and/or blood in your poo, a persistent and unexplained change in bowel habit, unexplained weight loss, extreme tiredness for no obvious reason and a pain or lump in your tummy.  

For more information visit bowelcanceruk.org.uk 

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