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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The image of stomas has been changed through the help of stoma patients, nurses and an artist who made the vision a reality.

NHS manager Michaela Tait listens to patients to improve their experiences. Now she has combined her listening skills with her artistic talent to change the image of life with a stoma.

“Like most people, perhaps, I felt that stomas would be unpleasant to hear about” Michaela says.

But when she got involved with a project that meant listening to stoma patients and nurses, she discovered it could transform patients’ lives. “Many said it gave them their lives back, and one man described his stoma bag as his ‘bag for life’” she says.

Michaela draws ‘jelly-baby people’, adding a heart to show their emotional side, and asked the patients how the stoma could be incorporated too.

“As a small bit of red bowel emerging through the skin, the stoma resembles a rosebud, so we decided I should draw jelly-baby people where the rosebud blossomed into a beautiful flower.”

“This resonated with the patients because their stomas had allowed them to bloom again, often after years of debilitating illness. We put in a few thorns because things were not always problem-free, but the images associate the stoma with blossoming into life – and roses are fragrant too!”

The specialist nurses fighting the stigma of stomas

Tracey Virgin-Ellison

Lead Specialist Stoma Care Nurse, Chelsea and Westminster Hospitals

Sarah Reid

Lead Specialist Stoma Care Nurse, Ashford and St Peters Hospitals

Tracey and Sarah: Award winning stoma care nurse specialists (SCNS) determined to show that rather than being something to fear, a stoma bag can change lives for the better.

What is a stoma?

A stoma is surgically created to remove disease such as cancer, inflammatory bowel disease or diverticulitis. It is an artificial opening on the abdomen, that allows faeces or urine, either from the intestine or from the urinary tract, to pass into a pouch, called a stoma bag. A colostomy is where part of the large bowel, is brought to the surface of the abdomen; an ileostomy is where the small bowel is used.

For those patients who have lived with the experience of chronic bowel disease, stoma surgery can transform their lives for the better. “A stoma can be a real life changer, I have seen patients go from fear to self-confidence, a stoma allows them to get on living their lives, pain free rather than spend hours worrying about where the next toilet is” says SCNS Tracey Virgin-Elliston.

“Sadly, we still see patients in clinic, that when given a cancer diagnosis, where surgery includes stoma formation, will say that they would rather die than have a bag. The thought of wearing a bag is usually devastating” adds Sarah Reid. “I’ve even had patients for whom the concern about the bag overrides their concern about cancer.”

For many patients, the thought of having a stoma bag is horrifying – yet given the correct information and support, most are able to adapt and lead complete and fulfilled lives.

Removing the stigma around stomas

These two nurses, along with Natasha Rolls and Mary Kane, are campaigning to remove fear, stigma and myths that surround stomas.

SCNS are specialists in all aspects of stoma care and offer lifelong support for patients with a stoma. Sarah says: “We meet them before surgery to find out more about their lives and relationships, offering information and discussing any concerns that they may have.”

The most common fears are around potential odour, leakage and relationships, “We discuss all of this and psychosexual/ body image concerns. We build lifelong relationships with patients and their families because a stoma affects them too” says Tracey. Sarah adds “We see our patients in hospital and their homes and become important to them – we have even been invited to their weddings.”

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Firefighter Chris uses a stoma bag after having a colostomy. Now he’s urging more men to put aside fear and get symptoms checked out quickly.

Chris Morrison, an operational firefighter in Derry, Northern Ireland, had a colostomy in 2016. Now he’s urging men not to ignore symptoms.

How were you diagnosed

When I noticed blood in my poo, I ignored it. It was not painful but when I started losing weight and was exhausted, my wife sent me to the doctor, who diagnosed haemorrhoids.

After feeling ill at work one day, a test showed a low blood count. I was rushed into hospital, and they found an 8cm tumour in my rectum. I needed a colostomy – a huge shock for a young fit man. Fortunately, the tumour proved non-cancerous, though left a bit longer it could have been.

I knew nothing about colostomies, but a colorectal nurse showed me the stoma bags I’d need and put my mind at ease.

Does your stoma hold you back?

I wear a SenSura Mio Concave, star-shaped bag that seals to my skin and never moves when I’m at work or jogging. It doesn’t prevent me from doing anything.

What do you say to men, in particular?

Don’t ignore symptoms like mine. Early diagnosis leads to better outcomes. The fear and shame attached to talking about poo can kill you.

My stoma was a life-changer for me and my baby

Bethany Fenwick

IBD patient

Intensive care nurse and mum Bethany Fenwick is trying to banish the stigma of stoma after an ileostomy gave her back her life.

How was life before your stoma?

I was rushing to the toilet up to 30 times a day, losing blood in my stools which led to exhaustion, and getting inflamed joints – a form of arthritis that comes with IBD flare-ups.

I studied, socialised and worked around it without taking time off sick, though I took a change of clothes everywhere. I thought I was living a near-normal life – but I wasn’t.

What made you decide on surgery?

I had baby Violet in 2016 and my IBD started impacting on her. I couldn’t get her pram into public loos; at mum and baby swimming I’d have to get out early and when I went into hospital for treatment, I’d miss out on time with her. Finally, I agreed to an ileostomy. I had refused before because it meant wearing a stoma bag.

How did your life change?

I’d worried that the bag would leak, show or smell, but it doesn’t. It’s easy to change. Mostly I forget I’ve got it.

I wish I’d known beforehand how it would change my life. Now I’m keen to banish the stigma of stoma and try to educate people about what a life-changer it can be.

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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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Recent research by Love Your Gut has shown that one in four people are failing to visit the doctor with gut health concerns – simply due to embarrassment.

Dying of embarrassment – the research

It may be easy to take your gut for granted, but this special organ really does deserve to be looked after!

Recent research by Love Your Gut has shown that one in four people are failing to visit the doctor with gut health concerns – simply due to embarrassment.

The report revealed that embarrassment was widespread and affecting all areas of people’s lives.

7% of respondents said they felt uncomfortable discussing their gut health with a GP or other medical professional and 8% said they had the same feeling about talking to their friends or colleagues about it. 

Tools to help you check your gut health

To help alleviate any awkwardness around gut health and raise awareness of the importance of seeking professional help, Love Your Gut has launched two new and free tools:

1. A Digestive Health Assessment
2. and Love Your Gut Food and Symptom Diary

Both can be used to monitor and assess gut health and symptoms and act as a starting point for conversations with doctors and healthcare professionals.

An expert’s view on gut health

Medical experts from the Love Your Gut campaign have emphasised the importance of seeking help for persistent problems and have urged people not to let feeling uncomfortable put them off.

Anton Emmanuel, Love Your Gut Spokesperson, Consultant Gastroenterologist at University College Hospital in London and Medical Director for Guts UK says:

“Symptoms arising from the gut are at once very personal and potentially embarrassing, but on the other hand also very public, in that they often cause patients to cancel appointments, avoid certain situations, change their wardrobe, miss out on social meals, etc.

“Seeking help to overcome the taboo can help get an earlier diagnosis (and hence more successful treatment) of worrying conditions, but also help find early remedies for the more common simple diagnoses”.

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Berta Corbera, Pharmacist and Nutritionist, discusses the role probiotics play on restoring our microbiota, and how our health can benefit from taking them.

What are probiotics?

Probiotics are live bacteria that can survive the acid environment of the stomach and increase the number of good bacteria in the gut.

They are incredibly useful to our body, producing vital vitamins that our bodies need and chemicals that remove pathogens from our gastrointestinal tract and can kill diarrhoea viruses. Our gut bacteria can, amongst other things, reduce inflammation, the risk of diabetes and heart disease, improve digestive issues so it is really important to know which probiotics help the gut bacteria to thrive.

What are probiotic supplments?

Probiotic supplements contain carefully selected strains of friendly bacteria.

Over 100 trillion bacteria make up the human microbiome in your digestive system. This delicate ecosystem can be disturbed by many things including illness, antibiotics and poor diet. Probiotic supplement formulas contain live bacteria to complement the gut flora naturally present in your gut.

It is important that the bacterial flora of the gut is healthy and diverse, as a balanced gut flora is strongly linked to good health. Different types of friendly bacteria have different impacts on the body. Bacteria have symbiotic relationships with each other, which boosts functions in complementary species. This is why it is important to choose a probiotic range that is multi-strain. Most probiotic dairy drinks only include 1 live bacterial strain which makes them considerably less effective.

Why are probiotics important for health?

Stress, poor sleep, viruses, antibiotics, eating on the go and erratic food consumption patterns can all put pressure on the gut. This can lead to bloating, discomfort and ultimately to poor nutrient absorption that in turn can mean we have lower energy. Probiotics increase the number of friendly bacteria in the gut and help to balance the number of bad bacteria present. These are some of the reasons why taking probiotics could be beneficial for you.

• The gut has a strong link to our brain and therefore an unhappy gut can greatly affect our mood and ability to function.
• Studies have shown strong effects on our immune system including reducing chronic inflammation and decreasing reactions to allergens in both the environment (like pollution) and food.
• They help our gut’s ability to absorb vitamins and minerals, allowing the gut absorb more goodness from food.
• They reduce the growth of bad bacteria, including those that can cause tummy upsets.
• They act as a barrier to prevent other harmful bacteria from colonizing the intestines.
• They are able to modify the microbial flora through the synthesis of antimicrobial compounds.

Who can benefit from probiotics?

Any healthy person will benefit from probiotics, but there are some people for who probiotics are recommended.:

• Symptoms of irritable bowel syndrome (IBS)
• Diarrhoea caused by a virus, bacteria or as a result of taking antobiotics
• Probiotics can be preventative, helping travelers avoid tummy upsets abroad
• Urinary tract infections, such as cystitis
• Infant colic
• Common cold and flu by helping to boost the body’s immune response
• Food intolerances and allergies
• Depression and anxiety: 90 % of the body’s seratonin is produced in the gut

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