Bladder & Bowel Health - Q2 2024

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“In the next 10 years, incontinence is set to grow rapidly in Europe.”

“GPs are there to help and ensure you get the right care at the right time.”

Professor Eamonn Rogers, Chair, EAU Patient Office Chair

Genevieve Edwards, Chief Executive, Bowel Cancer UK

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Trust Your Gut. Louise Thompson TV Personality and Author Read more on page 02

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Trust your gut and speak out about your ulcerative colitis symptoms Louise Thompson was diagnosed with ulcerative colitis (UC) six years ago. She talks about her journey and how to help others feel better and find the right support.

INTERVIEW WITH Louise Thompson TV Personality and Author WRITTEN BY Angelica O’Toole

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lcerative colitis, a chronic inflammatory bowel disease, led Thompson to seek help with persistent diarrhoea with bleeding. She received a diagnosis of mild to moderate UC and initially pursued holistic management through diet and lifestyle.

“I’ll just look after myself, and the problem will go away — it absolutely doesn’t work like that,” she recalls.

that some people don’t want to live with a stoma. It’s such a sensitive thing; waking up with a stoma is life-changing — it’s a body change.”

Find the right support for ulcerative colitis Beyond her personal journey, Thompson is committed to using her platform to raise awareness about UC and stomas.

“We should be able to tell people, ‘this is my story, this is Finding the right ulcerative colitis treatment what I did.’ Hopefully, it gives people the confidence to do Despite experiencing periods of remission the same,” she says. with medication, she experienced several She also finds solace and support in her Ulcerative colitis hospital patient group, recognising the challenges, especially after childbirth.

According to Crohn’s & Colitis UK, women invaluable role of shared experiences in is not reserved with UC may have a higher risk of postpartum navigating life with a chronic illness. Early flare. Three months postpartum, Thompson diagnosis, self-advocacy and seeking support for the elderly; experienced a lot of blood loss and diarrhoea. trusted individuals are key, she says. it can happen to from “The trauma of the birth and many other “People provide support in different ways. things contributed to it getting worse,” Not everybody is going to be able to give you anybody. she says. exactly what you’re looking for,” she insists.

The relationship between mental and “Find people who can help advocate for you. physical health became apparent as Thompson battled There have been times when I’ve been completely unable to debilitating anxiety alongside her UC symptoms. “Mental advocate for myself because I was so unwell.” health and physical health are so intertwined; you can’t really treat one without treating the other.”

Ulcerative colitis awareness and diagnosis Ulcerative colitis is not reserved for the elderly; it can Lease of life after stoma surgery happen to anybody. “Awareness can help people take it Despite multiple medication changes to manage the more seriously,” she insists, advising people to speak up and symptoms, Thompson’s condition deteriorated. After trust their gut instinct. exhausting her options and seeking advice, she underwent “Don’t give up. If you’re rejected by the first doctor you stoma surgery. speak to, keep going,” she insists. “If someone’s not listening, In the UK, about 200,000 people are living with a stoma. “It or someone’s not right for you, there are always more options. feels like a small price to pay for health. I completely respect Find someone who will listen.”

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Why it’s important to protect and support the bladder’s microbiome The human bladder contains a ‘microbiome’ of friendly and beneficial bacteria that needs looking after, explains Debbie Cotton, Head of Clinical Innovation at Invivo Healthcare.

INTERVIEW WITH Debbie Cotton Head of Clinical Innovation, Invivo Healthcare WRITTEN BY Tony Greenway

What is ‘the microbiome’?

It’s the community of bacteria that lives in our environment and on and in our bodies, influencing our health in positive and negative ways. Every part of our body has its own unique microbiome, which includes friendly bacteria as well as potentially harmful bacteria. Much has been written about the importance of the gut microbiome over the years and how its balance affects gut health. Recently, however, scientists have discovered that the bladder has its own microbiome, too.

The bladder doesn’t contain bacteria because urine is sterile. Isn’t it?

Actually, scientific opinion has changed on this point. Open any medical textbook that hasn’t been updated lately, and you’ll read: ‘Urine is sterile and doesn’t contain bacteria unless there is an infection’ — or words to that effect.

However, we now know this isn’t the case thanks to DNA testing technology that has identified microbiomes in places on the body that we just didn’t know about before. Research now shows consistently that the human urinary bladder contains an indigenous microbiome, both in men and women.

Why is this an exciting development?

Because some of these friendly microbes might possibly have a beneficial — or protective — effect on the bladder. More research is needed to fully understand this, but a hypothesis is forming that they may prevent the growth of pathogenic (harmful) bacteria and contribute to the health of the epithelial lining. This could reduce chronic urinary tract infections (UTIs) and other conditions of the bladder.

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Is the gut microbiome connected to the urinary microbiome?

All microbiomes are connected. Even the microbiome in your house is connected to the microbiome in your gut. Some of the same friendly bacteria found in the gut microbiome are similar to species found in the vaginal and urinary microbiomes. Keeping your gut microbiome and vaginal microbiome full of friendly bacteria can stop translocation of pathogens from one microbiome site to another.

Plus, the microbes in your gut microbiome make metabolites, which impact your immune system and are also excreted from your urinary bladder. These may have an impact on other microbial colonies around the body’s niches.

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How do we know when the urinary microbiome is working as it should?

That’s tricky. Without testing, it’s much harder to tell if it’s working well. We only know that it has been disrupted when symptoms start appearing.

However, anyone who suffers from UTIs should certainly consider ways to support their bladder microbiome.

How can I support my gut and urinary microbiome?

Exposing yourself to food types that either feed or contain Lactobacilli bacteria may be really helpful.

These microbes can be found in fermented foods such as traditionally made whole-food yoghurts, kefir, fermented vegetables — such as kimchi, sauerkrauts — and other fermented foods.

Lactobacilli like to eat prebiotic fibres found in fruit, vegetables and grains — so having a diet rich in these fibre-rich plant foods is a supportive option.

Including diversely coloured plant foods in your diet can also be helpful, as the plant chemicals that create the pigmentation known as polyphenols are also a great way of feeding your friendly bacteria.

What should I avoid that might be damaging to the microbiome?

Avoid douches because these can remove bacteria from the vaginal microbiome that communicate with the bladder. Don’t use harmful chemicals around the house, and change your diet if it includes lots of ultra-processed foods.

Of course, we all need antibiotics sometimes, but their overuse could be damaging. Many people won’t have heard of the microbiome. However, it’s important to understand that friendly bacteria live in our bladder — and need looking after.

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How incontinence treatment options can improve lives of patients at any age Various treatments are available for urinary incontinence. If you have symptoms, don’t put off seeing your GP because treatment could make a big difference to your quality of life.

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ccording to NHS England, approximately 14 million people in the UK have some degree of urinary incontinence — a condition linked with a reduced quality of life and mental health issues.

INTERVIEW WITH Chris Harding Consultant Urological Surgeon at Newcastle upon Tyne Hospitals NHS Foundation Trust, and Professor of Urology at Newcastle University

WRITTEN BY Tony Greenway

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A variety of therapies are available to treat incontinence.

Quality of life can be restored with the right medical treatment.

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If you've noticed changes to how you think and feel that concern you, talk to your GP about them.

In the first instance, they may recommend changes to what you eat and drink. Other lifestyle changes may be encouraged.

These include: weight loss and stopping smoking. You may also be directed to other information sources (eg. the CONfidence app).

Avoid putting off incontinence treatment There are certain misconceptions about incontinence. For instance, there’s a mistaken belief that it’s an inevitable part of ageing. Plus, some the sphincter muscle and pelvic floor.” think it’s untreatable. So, they just learn to live Simple interventions can make a difference. For with it; but that’s not right, insists Chris Harding, instance, patients experiencing incontinence at night Consultant Urological Surgeon at Newcastle upon (particularly those with an overactive bladder) are Tyne Hospitals NHS Foundation Trust and Professor advised to reduce caffeine and evening fluid intake. of Urology at Newcastle University.

In other cases, pelvic floor exercises may prove “Anyone experiencing regular urinary leakage needs beneficial. to know it’s not normal, no matter how old they are,” he says. “They must also understand that good, Shared decision-making and seeking help effective treatments are available — and largely very Medications are available, too, and — in severe successful, so people should never suffer in silence.” instances — surgical procedures are an option.

The problem is that men, in particular, may be so “I’m an advocate for shared decision-making,” embarrassed by symptoms that they says Professor Harding. “Health put off seeing their GP. “I understand practitioners should explain the that because incontinence is thought of treatments available and Anyone experiencing range of as a ‘taboo’ subject,” says Professor work with the patient to decide regular urinary Harding. “We have to break that which one will be the best fit.” taboo because some people will Certainly, we need more open leakage needs to leave it five, 10 or 20 years before conversations about incontinence. know it’s not normal, “That’s why we support initiatives seeking help. In many cases, a simple treatment can be offered such as World Continence Week,” no matter how old that will drastically improve their says Professor Harding. “We want quality of life.” patients to know that medical they are. practitioners have clear treatment guidelines for incontinence and Simple interventions can make a that there is exciting research in this field. This will significant difference further improve treatment options and lead to better There are different reasons why symptoms appear. patient care, but we can only help people if we know “If the bladder is overactive, the bladder muscle they have a problem in the first place. So, DON’T put contracts when you don’t want it to, resulting in the up with incontinence. See your GP.” expulsion of urine,” explains Professor Harding.

“Incontinence can also occur if there is weakness in

Scan the QR code to find out more

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A journey to better health 4

Your GP may refer you to a specialised team for further tests and treatment options.

Continue to maintain a healthy lifestyle.

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• For faecal incontinence: anal irrigation (washout), a colostomy • For stress incontinence: slings made out of a surgical mesh that restore the normal anatomy of the bladder • For overactive bladder symptoms: Botox injections every few months

Treatment options include:

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If the conservative efforts mentioned do not work for you, return to your doctor to find an alternative treatment.

This might include incontinence medicine.

• Supervised pelvic floor muscle-training/physiotherapy • PTNS: stimulation of a nerve in the lower leg • Alternative incontinence medicine • Sacral neuromodulation: pacemaker for bladder/bowel

Finding freedom from faecal incontinence through innovative implant My incontinence journey started 38 years ago. I got diarrhoea occasionally, possibly because of a traumatic delivery giving birth. After several referrals, I received life-changing sacral nerve stimulation treatment.

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even years ago, after a hysterectomy, I had adhesions, and I started to suffer faecal incontinence. Some days, I couldn’t even hold on for the 10-minute drive to work.

other tests. I felt abandoned when the doctors told me I didn’t have cancer and required no further action. I still had the same problems but nowhere to go.

Sacral nerve stimulation implant Daily life with faecal incontinence By chance, at my local park run, I Normal daily activities like shopping met a woman who had experienced and walking caused me to have similar problems. She underwent a problems, and I would poo myself so new treatment called a sacral nerve badly that it would seep out of the stimulation by Mr Michael Powar, a side of my underwear. I Consultant Surgeon at would carry a bag with Addenbrooke’s Hospital The whole thing wet wipes and spare in Cambridge. After clothing, just almost three years, I was has been an in case. referred to him. After amazing success I’m a runner, and I love almost three years, I was and has been running, but this became referred to him. increasingly difficult I was so happy when he life-changing. as accidents happened said he could help me, but more often without any I was also anxious about warning. I found it devastating. the procedure. Following a successful two-week trial, I was fitted with a Diagnosis journey with multiple referrals permanent device. The whole thing The final straw came on holiday. has been an amazing success and has Walking back to the hotel after a meal, been life-changing. it happened, and it was everywhere. I I feel frustrated that it took so long had no control. Back at the hotel, I felt to get the help I needed, but I hope broken. After that, I bought several others can be helped sooner by raising pairs of special pants with charcoal awareness. lining and incontinence pull-ups to reduce the risk of leaking through my clothing.

My doctor referred me to bowel Linda consultants, a gastroenterologist Patient and a nutritionist. I had X-rays, colonoscopies, endoscopies and

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There are other options available and you may be able to discuss these with your hospital.

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Continue to seek help from your doctor if you have still not found the right treatment for you.

Only 30% of GPs know about Fowler’s syndrome: here’s what it is and how to recognise it Fowler’s syndrome is a life-changing and currently almost untreatable bladder condition that causes partial or full urinary retention. It solely affects women and is stigmatised, under-researched and under-funded.

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hen I stopped being able to pass urine, it took 18 months to get a diagnosis.

I was in so much pain that I thought my life was over.

I was eventually diagnosed in 2016 with Fowler’s syndrome, a poorly understood bladder condition affecting up to 20,000 women in the UK. Stigmatised Fowler’s syndrome ruining women’s lives Women with Fowler’s syndrome have a dysfunction of the muscles that let urine out of the bladder. As a result, many use a permanent or intermittent bladder catheter or have surgery to be able to pass urine.

Fowler’s syndrome is commonly associated with pain, and 85% say their life has been severely affected.

Standard camera tests, scans and other tests are usually normal. However, there is a lack of research and resources.

An estimated 75% are told it’s a result of anxiety I was lucky in terms of my treatment for Fowler’s because the average wait between first symptoms and diagnosis is four years. A survey of over 250 women with Fowler’s syndrome found that most had experienced stigma in relation to their condition.

For instance, Elle Adams, Fowler’s

Syndrome UK’s ambassador, was told that she was ‘just an anxious young girl’ by a urologist before her diagnosis.

Changing the clinical landscape Now, I am on a mission to change things for women with Fowler’s.

In 2021, I started the first and only charity for the condition, Fowler’s Syndrome UK (FSUK), which has the support of a multidisciplinary medical board. FSUK has obtained funding to set up a patient helpline and run national support groups, but much more is needed.

The lifetime cost to the NHS of Fowler’s syndrome is over a quarter of a million pounds per person. We badly need more research to find out why women lose their ability to use their bladders and to develop better treatments.

Read more about Fowler’s syndrome: fowlerssyndrome.co.uk

Dani Coombe Founder & CEO, Fowler’s Syndrome UK

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Why prostate cancer aftercare should not be an afterthought Improved prostate cancer diagnosis and treatment have tripled survivor rates since the 1970s. However, treatments may affect sexual and urinary health, so aftercare options are crucial for quality of life.

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he two main choices to treat organ-defined prostate cancer are surgery and radiotherapy. Patients often select their treatment based on side effects and the treatment’s impact on their quality of life.

Side effects of prostate cancer treatments Modern-day treatments are excellent at successfully treating prostate cancer, but they come with well-documented consequences, including sexual dysfunction and urinary leakage. One of the largest surveys in the UK on ‘Life after Prostate Cancer Diagnosis’ found 81% of men to have poor or very poor sexual function.

Moreover, 54.5% of men still had some degree of problematic urinary function 18–24 months after treatment. The negative effect of these on quality of life can lead to treatment regret, and they impact patients’ confidence in social situations and relationships.

Prostate cancer treatment aftercare There are a multitude of options to treat both sexual dysfunction and urinary leakage.

The earlier intervention is started, the less the impact on quality of life. Treatments are multifaceted and include psychotherapy, physiotherapy, medications and surgery and can improve physical and mental wellbeing.

Increasing awareness of survivorship experience Prostate cancer awareness has increased.

Significant focus has been on improving the diagnosis and initial treatment. However, given the importance of side effects on treatment decisions and quality of life, aftercare should not be an afterthought.

Patients should be provided with a realistic roadmap for life after cancer treatment from the first diagnosis, empowering them to take ownership of their survivorship experience.

Specialist experts in sexual dysfunction and urinary leakage offer proactive, timely and specific management.

Enhanced patient monitoring post-surgery With the work of Consultant Urological Surgeon Majed Shabbir and Arun Sahai, alongside Research Fellow Findlay MacAskill at Guy’s and St Thomas’ NHS Foundation Trust Urology Centre, our understanding of patient needs following radical prostatectomy have shifted. We have improved education and communication, adopting a proactive approach to managing treatment impact holistically. Patients now see specialists in sexual dysfunction and bladder problems at every visit following surgery.

Spreading incontinence facts and its mental health impacts on World Continence Week 2024

Rising incontinence costs and the environmental crisis lurking in Europe’s waste

World Continence Week raises awareness of incontinence, aiming to destigmatise it along with various stakeholders to spread real impact and facts.

Incontinence is often described as a hidden disability, but it takes a real toll on patients’ quality of life and society as a whole.

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he World Federation of Incontinence and Pelvic Problems (WFIPP) ‘took over’ World Continence Week from the International Continence Society (ICS) around eight years ago. Both myself and WFIPP Treasurer, Tomasz Michalek, are members of the ICS, the European Association of Urology (EAU) and other scientific societies. Michalek Michalek is also co-founder of WFIPP. Annual World Continence Week WFIPP has been organising World Continence Week with ever-increasing success year on year. World Continence Week is a major global awareness-raising campaign — a key activity for WFIPP in our annual programme. It takes place each year, on the third week of June.

This year’s dates are on the 17th–23rd June.

What can be done to remove incontinence stigma and taboo?

As a society, we must address all the problems involving any form of urinary or faecal incontinence (leakage) in a factual manner.

We need to stress the impact and burden that these conditions entail for patients and their families, including the huge impact on quality of life and, increasingly, recognising its impact on mental health.

We must strive to take incontinence out of the taboo sphere. This involves making a lot of noise, awareness-raising campaigns, such as World Continence Week and working from the premise of a multidisciplinary approach with patient advocates, clinicians, allied health professionals, payers, researchers and official institutions in terms of influencing policymakers.

Facts and figures: 1 in 3 women and 1 in 10 men We need accurate data and statistics. The figures speak for themselves: 1 in 3 women and 1 in 10 men suffer from some form of incontinence/leakage, and it is not just an issue for the elderly.

Quite the contrary, for young women especially who may experience it during exercise, after childbirth or menopause. For men, it may arise as a consequence of prostate cancer or other interventions; either after a radical prostatectomy or radiation therapy.

In men, these issues have only recently started to become addressed. The burden of incontinence is massive — and we need to address it now.

Scan the QR code to see this year’s toolkit and logo and visit supportincontinence.org for WFIPP’s digital tool in 7 languages.

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he burden of incontinence affects every aspect of patients’ lives. Incontinence ties patients to accessible facilities and leads to higher rates of anxiety and depression, often defining their quality of life. Urinary incontinence has been linked to cardiac failure, chronic renal failure, diabetes, cognitive impairment, sleep apnoea and more.

Furthermore, patients often bear a financial burden from managing their symptoms.

Incontinence costs Europe €69 billion annually, putting it roughly on par with the cost of cancer at €100 billion.

Socioeconomic and environmental impact Beyond the burden incontinence has on patients, we are beginning to understand more about the impact of incontinence on society as a whole. A recent study by the European Association of Urology focused on the economic and environmental impact of incontinence in Europe.

With healthcare costs, productivity losses and waste disposal costs, they estimate incontinence costs Europe €69 billion annually, putting it roughly on par with the cost of cancer at €100 billion. The cost of incontinence is not exclusive to the economy; it additionally wreaks havoc on the environment. Billions of incontinence pads are disposed of and incinerated each year, making up 4.8% of all municipal waste.

The future of incontinence in Europe In the next 10 years, incontinence is set to grow rapidly in Europe. While the population is ageing, patients are living longer after treatments that result in incontinence and are also more empowered to demand tangible changes from their governments around continence care and accessibility. The cost of incontinence is set to rise by up to 20% by 2030, so Europe must move quickly to combat it.

However, there is room for optimism. Last year, the Urge to Act campaign brought together scientists, professionals, patients and industry, alongside Members of the European Parliament, to sign a manifesto demanding action on incontinence.

The manifesto calls for decisive policy changes to tangibly improve continence care in Europe and advocates for a systemic response to incontinence care, calling for equitable access to facilities and care, better patient education outreach and funding for the research of healthy and sustainable solutions.

WRITTEN BY

Arun Sahai PhD FRCS (Urol), Consultant Urological Surgeon & Reader in Urology, BAUS

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WRITTEN BY

Mary-Lynne Van Poelgeest President, World Federation of Incontinence and Pelvic Problems (WFIPP)

WRITTEN BY

Professor Eamonn Rogers Chair, EAU Patient Office

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Regenerative treatment may offer a cure for incontinence patients Patients whose lives have been impaired by faecal incontinence are offered new hope with proposed technology that could offer a potential cure, rather than management, of their condition.

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n her 20s, Joanne suffered a fourth-degree vaginal tear during childbirth. It resulted in a traumatic injury to her anal sphincter — the muscles that control bowel continence — leaving her with faecal incontinence, urinary incontinence and nerve damage. She still managed these debilitating conditions nearly two decades later.

INTERVIEW WITH Richard Day Professor of Regenerative Medicine Technology, University College London

INTERVIEW WITH Charles Knowles Professor of Surgery at Queen Mary University of London and Consultant Colorectal Surgeon at the Cleveland Clinic London INTERVIEW WITH Joanne Patient WRITTEN BY Tony Greenway

To learn more, visit amelie-project.eu and ucl.ac.uk/day-lab

Limited treatment options for faecal incontinence Depending on the severity, treatment options can include changes to diet and lifestyle, diarrhoea medication, behavioural therapy and pelvic floor physiotherapy. In some cases, patients may be fitted with a neurostimulator, a pacemaker-like device generating electrical impulses to the sacral nerves to improve communication between the bowel and brain. In others, sphincter repair surgery may be necessary.

Yet, when she first sought help, Joanne felt dismissed by some medical professionals. “If women are told that a ‘difficult’ birth is bound to make them a ‘bit incontinent,’ they feel like they’re making a fuss,” she says.

Coordinated by University College London (UCL) and led by Richard Day, Professor of Regenerative Medicine Technology, the AMELIE project aims to use revolutionary cell therapy to find a cure for a condition that affects approximately 67 million people in Europe alone.

“The new technology takes muscle cells collected from the patient via biopsy and anchors them to small, dissolvable polymer microspheres; each Life-changing impact of faecal incontinence about the size of a grain of salt,” says Professor Joanne finally had surgery two years later, but the Day. “Injecting cells back into the patient in a tissue damage was so extensive that a full sphincter more natural, anchored state improves delivery repair was not possible. “I was in the hope that more of them left with frequent faecal and will survive and engraft with urinary incontinence,” she says. the patient’s sphincter muscle, If the trauma caused “Plus, the nerve damage meant thus promoting regrowth and by vaginal tears can be that I didn’t always know when I improving continence.” Unlike needed to go to the toilet.” identified earlier, and if surgery, this pioneering procedure A sacral nerve stimulator is minimally invasive. this new treatment is a has reduced the number of incontinence episodes, but her success, women won’t quality of life remains severely Aiming for a new cure need to endure years impaired. “I can’t put into words The first clinical study using the impact this condition has,” the technology is due to begin of shame she says. “Before I go out, I need in early 2025 and will include to know where the nearest toilets women whose incontinence has are. I need to have spare clothes, been caused by trauma sustained during childbirth. pads and antibiotics in case of infection.”

However, Professor Knowles admits: “Even if the study goes well, there will be hurdles to cross before Regenerative medicine offers promise to patients it can be made accessible to patients.”

The trauma of incontinence can be psychologically Yet, Professor Knowles and Professor Day are scarring, too. “Incontinence induces two of the excited by its possibilities. “Existing treatments most powerful human emotions: fear and shame,” simply manage the condition,” says Professor Day. explains Charles Knowles, Professor of Surgery at “AMELIE will ideally be a one-off treatment to restore Queen Mary University of London and consultant sphincter function.” The technology may also be colorectal surgeon at the Cleveland Clinic London. useful in other areas of regenerative medicine.

However, the promise of regenerative treatment Though Joanne is not participating in the study, offers new hope to patients with faecal incontinence. she is acting as a patient adviser to the project. “If Professor Knowles is also Clinical Chief Investigator the trauma caused by vaginal tears can be identified of a five-year, €9.5 million collaborative research earlier, and if this new treatment is a success, women project called AMELIE (Anchored Muscle cells for won’t need to endure years of shame, fear and lack of Incontinence) involving 13 organisations across nine freedom,” she says. “That could be life-changing.”

European countries.

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Paid for by The AMELIE Project via Bowel Research UK

The AMELIE project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 874807.

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New drug candidate can improve therapy in bladder cancer patients A promising drug candidate has positive clinical effects in patients with bladder cancer. The number of tumours and tumour sizes were reduced in a majority of patients treated — and without severe side effects often associated with other treatments.

B Catharina Svanborg Chairman of the Board, Hamlet BioPharma AB and Professor, Lund University SPREAD WRITTEN BY Tony Greenway

With imputs from colleagues: Martin Erixon, Jakob Testad, Sid Chinchankar, Björn Wullt, Ines Ambite, Hien Tran

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ladder cancer is a disease which has a high likelihood of returning after treatment. Indeed, after the removal of the first tumour, cancer has been found to recur in 80% of these patients — and 15% go on to develop muscle-invasive disease. So, there’s an urgent need for safe and effective new treatments that could stop disease progression and prevent recurrences.

Drug candidate reduces bladder cancer tumour size Now, a breakthrough may be on the horizon because Sweden-based pharmaceutical company Hamlet BioPharma has announced promising new data from a clinical trial of its drug candidate for the treatment of early non-muscle invasive bladder cancer, Alpha1H. Alpha1H is a synthetic drug candidate developed from HAMLET (human alpha-lactalbumin made lethal to tumour cells), originally discovered in human breast milk.

Combined data analysis from treated patients showed that higher doses of Alpha1H significantly reduced the size of 82% of tumours while lower doses significantly reduced the size of 45% of tumours, compared to a placebo group. Among other benefits, it’s hoped that the therapy could improve the treatment of early tumours and possibly reduce the risk of tumour regrowth

post-surgery, paving the way for less invasive surgical interventions.

Way to treat patients without severe side effects “Alpha1H kills tumour cells with great precision and is straightforward to produce in large amounts,” says Catharina Svanborg, Chairman of the Board at Hamlet BioPharma. “What’s more, our studies show there is limited toxicity associated with its administration, so patients can be treated without experiencing the severe side effects associated with chemotherapy.” The biopharmaceutical company is now working towards a phase III clinical trial.

Fast-tracking drug candidate approval The US Food and Drug Administration (FDA) has granted Fast Track Designation for Alpha1H, accelerating its approval process and potential to reach the US market and opening up dialogue with potential commercial partners. “Fast Track Designation is an exciting development,” says Jakob Testad, Chief Financial Officer at Hamlet BioPharma. “It demonstrates the promise of Alpha1H and underlines how vital it is to address bladder cancer and improve the quality of life for patients suffering from this disease.”

Molecular insights can relieve severe symptoms in patients with chronic bladder pain syndrome

Hamlet BioPharma is an innovative biotechnology company that develops scientific discoveries from scientists at Lund University into drugs for the treatment of cancer and infections. This joint effort addresses unmet medical needs in large patient groups in need of improved cancer treatments or alternatives to antibiotics.

Find out more at hamletbiopharma.com

The exaggerated pain response in patients with chronic bladder pain syndrome is very difficult to treat. New approaches are therefore essential.

Scan the QR code to find out more

Spread paid for by Hamlet BioPharma

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ladder pain syndrome (BPS), otherwise known as interstitial cystitis, is a chronic and socially debilitating long-term bladder condition, for which specific therapies remain unavailable.

Managing bladder pain syndrome effects Symptoms of BPS may come and go, but patients can experience intense pelvic pain, a sudden urge to urinate and/or more frequent urination.

“In some cases, the pain is so bad that patients have trouble sleeping or keeping a job,” says Björn Wullt, Senior Urologist. Managing the pain with broadly used painkillers is often ineffective, but patients may be helped by morphine or — in severe circumstances — surgery.

A drug developed to inhibit excessive immune responses is being tested on patients with bladder pain syndrome, a chronic and debilitating condition in a phase II clinical trial.

The results have been promising so far.

Immunomodulation treatment with promising results The company is now conducting a controlled clinical trial with a drug called anakinra (IL-1RA), which neutralises the biological activity of potent pro-inflammatory molecules.

“IL-1RA is a registered drug, commonly used to treat hyperinflammatory diseases,” explains Ines Ambite, Scientist at Lund University and Hamlet BioPharma. “But no one had used it in patients with bladder pain before.”

The results of the trial have been positive. “A significant proportion of patients responded positively to the treatment,” notes Wullt. “Their pain was reduced and their quality of life increased.” Hamlet BioPharma has patented the use of anakinra for bladder pain.

This type of immunomodulation treatment works by blocking inflammation and pain. “We are now proceeding with a placebo-controlled phase II study,” reveals Wullt.“The preliminary results also look positive. We hope this therapy will offer real hope to patients with this debilitating pain disorder.”

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Image provided by Hamlet BioPharma

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How to potentially treat bacterial infections — but without using antibiotics

Immunotherapy can successfully treat urinary tract infections in mice. If the same results are found in humans, it could be useful in the fight against antimicrobial resistance.

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ntimicrobial resistance (AMR) is a growing danger — one that is made worse by the constant overprescribing and misuse of antibiotics.

In fact, the World Health Organization (WHO) has declared AMR to be one of the ‘biggest threats to global health, food security and development today’ and has highlighted the need to combat it with novel solutions.

Exploring immunotherapy for bacterial infections Hamlet BioPharma is investigating alternative ways of treating bacterial infections by strengthening an individual’s antibacterial defence with immunotherapy, thus bypassing the need for antibiotic use.

Take urinary tract infections (UTIs), which are among the most prevalent infectious diseases globally and include acute cystitis, which affects around 50% of all women during their lifetime. Hamlet BioPharma has now identified that the registered drug anakinra (IL1-RA) is an effective treatment for acute cystitis in mice — and hopes that it will also prove efficacious in humans.

Hoping for success in an ongoing human trial “We have used this treatment in READ MORE AT HEALTHAWARENESS.CO.UK

mice with urinary tract infections and know that it works,” says Ines Ambite. “The inflammatory response to infection of the mice’s IL-1 gene was controlled by the IL-1RA drug, which also increased bacterial clearance from their bladders and kidneys.”

Immunotherapy was effective against infections in mice caused by antibiotic-sensitive or antibiotic-resistant bacterial strains.

The results show that these types of infections can be treated with therapies other than antibiotics — an important conceptual advance and one that could be of huge importance in the fight against AMR. “A trial is now ongoing to test the efficacy of IL1-RA in humans with urinary tract infections,” notes Martin Erixon, CEO of Hamlet BioPharma. “The results should be known later this year.”

Using state-of-the-art techniques to analyse treatment effects “As a company collaborating with the university, we gain access to sophisticated, state-of-the-art techniques to analyse various treatment effects and draw conclusions,” says Erixon.

“Collaboration with the scientists at Lund University is essential for the successful development of the projects.”

Intestinal health may be improved by a protein complex, originally from human milk

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Scientists are exploring a milk protein complex that effectively kills cancer cells and prevents tumour growth — especially in colon cancer.

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Promising way of delaying tumour olon cancer is one of the development most common types of “We introduced the complex in the cancer — 180,000 cases are drinking water of mice that were diagnosed every year in genetically susceptible to developing the US alone — and a leading cause intestinal tumours,” explains Hien of death worldwide. Patients with Tran, Scientist at Lund University. colon cancer are usually treated “The results were exciting because with surgery followed tumour development by chemotherapy was markedly to reduce the risk reduced and the We introduced of recurrence — long-term survival the complex in but recurrence was increased in the drinking rates are high, and these mice.” the side effects of In mice that had water of mice that chemotherapy are already developed were genetically often severe. cancer, the team susceptible to found that the Potential non-toxic developing intestinal complex targeted the treatment for colon tumour rather than tumours. cancer healthy intestinal The scientists at tissue. What’s more, Lund University are it did not cause currently investigating the discovery side effects in mice with cancer or of a non-toxic treatment approach in healthy mice that received the for colon cancer using a milk protein complex in their drinking water — an complex that effectively kills cancer extremely promising development. cells. The complex has shown strong effects on tumour tissue growth, especially for colon cancer.

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Tips on visiting your GP if you’re worried about bowel cancer

Why boys need bins: how to ensure hygiene access in all toilets

Smoothing the path to diagnosis: how to find out what’s up with your gut

If you’re worried about potential bowel cancer symptoms, making an appointment with your GP is an important first step towards finding out what might be wrong.

A campaign is underway for equal access to hygiene and waste disposal in men’s toilets, especially for those with bladder and bowel incontinence conditions.

Stomach pain, frequent diarrhoea and blood in your poo may be symptoms of a gastrointestinal condition. Paying attention to your bowel habits is vital, and so is seeking help if something isn’t right.

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ymptoms, such as bleeding from your bottom, blood in your poo, changes to your pooing habits or a pain or lump in your tummy, don’t always mean you have the disease, but it’s still important to find the cause.

Discussing bowel symptoms At Bowel Cancer UK, we know that people can find speaking to their GP about poo embarrassing, so we’ve put together tips to help you prepare for your appointment.

Before your appointment, think about your answers to some common questions the GP may ask. They will want to know what symptoms you’re experiencing, how long you’ve had them and whether there’s anything that makes them better or worse. A good way to prepare is to track symptoms using our symptoms diary.

Your GP may ask about your medical history, lifestyle and family history.

Bowel cancer risk factors and diagnosis Your GP may ask about your medical history, lifestyle and family history. Prepare for these questions by thinking about any recent changes in your life, including a new diet or medicines.

During your appointment, mention whether anyone in your close family has had bowel cancer. You may want to speak to relatives about any cancer in the family. Prepare notes before your appointment, such as a list of any medication and questions you want to ask, to help you remember crucial information during your appointment.

Based on your symptoms and history, your GP may refer you for a blood test or arrange a simple-to-use, at-home poo test. This will tell your GP if you need further tests. If you’re worried about your symptoms and your GP doesn’t offer you an at-home test, you can ask about one.

Finding the cause of bowel symptoms After your appointment, if your symptoms don’t get better, go back to your GP or ask to see another GP. Sometimes, it can take several appointments to find the cause of your symptoms, but it’s important to keep trying.

GPs are there to help and ensure you get the right care at the right time.

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s Chair of the Association for Continence Professionals (ACP), I am delighted that following a recent relaunch, with a new name and logo, we are proud to announce our new Patron is Sir Robert Francis. He is well-known for shining a light on the need for health improvement and addressing health inequalities. Sir Francis is particularly interested in striving for excellence in bladder and bowel healthcare.

Male continence campaign for waste disposal access A huge campaign is underway to lobby for change to ensure equal access to waste disposal in all toilets. ACP supports the ‘Boys Need Bins’ campaign by Prostate Cancer UK which, alongside the All Party Parliamentary Group for Continence Care, has passionately led widespread communication to encourage public buildings to ensure waste bins are available in all toilets.

Recent workplace surveys show that 73% of respondents stated that they didn’t have access to hygiene in men’s toilets. I am delighted that my NHS organisation are keen to address this inequality and is working to pioneer change to ensure male staff and visitors to our buildings have access to sanitary disposal.

Adopting hygiene and waste disposal initiative The University Hospital of Morecambe Bay has started to implement this. We are not alone; let us also shine a light on University Hospitals of Leicester and South Tees NHS Hospitals Foundation Trust for not only getting ahead of the curve but sharing their ideas and inspiring other NHS organisations to adopt this change.

Join us; let’s make this a national conversation, recognising that men who wear a pad, pouch, catheter or stoma bag need practical support. It is not acceptable that they continue to carry their soiled sanitary waste or are expected to use a disabled toilet when they don’t consider themselves to be disabled.

ACP supports the key recommendation for new legislation, and we urge the public to get involved. Let’s create a better world fostering positive wellbeing and continence dignity for all.

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he Crohn’s & Colitis UK symptom checker has been one of our charity’s biggest success stories. More than a quarter of a million people have taken the 30-second survey to get guidance on whether they might need to seek professional advice about their bowel symptoms. That’s a promising step forward in raising awareness of Crohn’s and colitis, but we all know that getting a diagnosis for gut problems can be far from simple.

Gastrointestinal diagnosis challenges One of the biggest issues is that so many gastrointestinal (GI) conditions have similar symptoms. This means it can be challenging for GPs to identify which tests and investigations are needed. Someone may have Crohn’s, colitis, IBS or coeliac disease, for example.

At Crohn’s & Colitis UK, people come to us every day with stories of repeated visits to their GP or A&E before they get a diagnosis, and they experience long waits to get to the bottom of what is going on in their bodies.

The sooner we can make sure that people are on the right path to the treatment they need, the better.

Empowering patients and aiding GPs A coordinated approach is essential. That’s why Crohn’s & Colitis UK has joined forces with other key gut-related charities, healthcare professional organisations and patients to make the route to diagnosis both clearer and smoother. We know we can’t afford to wait.

The Lower GI Pathway is a concise and informative tool designed to empower both patients and their healthcare practitioners.

By working together with other experts, we have developed a pathway to support busy GPs making vital decisions about tests and investigations. Our patient toolkit makes the process of diagnosis less overwhelming for those with symptoms, by giving them information on what to discuss with their GP and the tests available to them.

Ultimately, the sooner we can make sure that people are on the right path to the treatment they need, the better. By working together with other experts in the field, we hope to make a difference in thousands of lives every year.

More information can be found at whatsupwithmygut.org.uk

WRITTEN BY

WRITTEN BY

WRITTEN BY

Genevieve Edwards Chief Executive, Bowel Cancer UK

Polly Weston Chair, Association for Continence Professionals (ACP)

Fern Howard Head of Policy and Campaigns, Crohn’s & Colitis UK

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WRITTEN BY Shann Jones MBE Founder/Director, Chuckling Goat

How a home microbiome test can pinpoint pathogens for optimal health

Use a microbiome test to identify any bacterial biofilms that may be hiding in your gut. Uncover 14 pathogens linked to chronic infections, inflammation and autoimmune disease.

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f you’ve ever had food poisoning, a UTI, a dental or skin infection or a hospital-acquired infection, bacteria may have migrated into your gut and formed a ‘biofilm.’

Biofilms are complex communities of microorganisms that adhere to surfaces and produce a protective matrix, making the bacteria within them highly resistant to antibiotics and other treatments.

Persistent gut biofilm risks Bacterial biofilms can persist in the gut for years, even decades, and are challenging to eradicate. Biofilm inside the gut can lead to chronic, low-grade infections that provoke ongoing immune responses, causing inflammation.

Chronic inflammation is a known risk factor for autoimmune conditions.

The persistent presence of pathogenic bacteria in biofilms can disrupt the gut microbiome, impair digestion and contribute to the development of autoimmune diseases like rheumatoid arthritis, lupus and inflammatory bowel disease.

Home microbiome test identifies pathogens Chuckling Goat, in collaboration with Cambridge Genomics at the University of Cambridge, has launched a home microbiome testing kit that tests for 14 separate gut biofilm-forming pathogens, including Enterococcus, Eggerthella, Fusobacterium, EscherichiaShigella, Campylobacter, Yersinia, Vibrio, Enterobacter, Clostridoides, Salmonella, Sphingomonas, Pseudomonas, Staphylococcus and Citrobacter. Identifying and resolving these gut pathogens can improve overall microbiome health, benefiting the following systems: • Digestive system: aids digestion and nutrient absorption; protects against gastrointestinal diseases

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• Immune system: regulates and trains immune responses, reducing allergies and autoimmune diseases • Metabolic system: influences metabolism, impacting obesity, diabetes and metabolic syndrome • Nervous system: affects mental health through the gut-brain axis, influencing mood and cognitive function • Respiratory system: defends against infections, impacting asthma and chronic obstructive pulmonary disease • Skin: maintains skin health, affecting conditions like acne and eczema • Reproductive system: supports reproductive health and prevents infections Comprehensive microbiome test with consultation The Chuckling Goat Microbiome Test also examines 86 biomarkers and assessment scores across the following areas: diversity, probiotics, prebiotics, postbiotics, mental wellness and systemic wellness.

It uses the gold-standard 16s RNA technology.

Test results are accompanied by a 30-minute consultation with a trained nutritional therapist. They will create a bespoke Personal Action Plan to improve gut health and resolve issues that surface from the test.

Experts advancing microbiome health Chuckling Goat works with a distinguished Scientific Advisory Board consisting of an interdisciplinary mix of NHS doctors, university professors, oncologists, pharmacists and biochemists.

The entire team is committed to advancing knowledge about the human microbiome and its numerous effects on health.

What’s the science behind a reliable microbiome test?

WRITTEN BY Dr Amrita Vijay Research Fellow, University of Nottingham

Discover the science behind a reliable and comprehensive microbiome test.

Find out how 16S rRNA sequencing enables in-depth insights and why it’s trusted by researchers.

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Standardised protocols enhance he Chuckling Goat robustness microbiome test uses Moreover, the method’s robustness 16S rRNA sequencing, is reinforced by its well-established which stands out as the protocols and continually preferred method for investigating refined bioinformatics tools. This the gut microbiome. The 16S rRNA standardisation ensures consistent sequencing method is widely and comparable results across recognised for its accuracy and different studies and laboratories, efficiency in microbial analysis. By which is a critical factor in advancing focusing on the 16S rRNA gene, this our comprehension of the gut technique offers in-depth microbiome and its insights into bacterial crucial role in both This identification and health and disease. standardisation classification.

At Cambridge Genomic Services, affiliated ensures consistent 16S rRNA empowering with the University of and comparable bacterial identification Cambridge, cutting-edge results across Modern sequencing genomics and 16S rRNA technologies, such sequencing technologies different studies as next-generation are complemented and laboratories. sequencing (NGS), by comprehensive have empowered the computational and versatility of bacterial identification. bioinformatic support. This integrated These advancements enable swift and approach streamlines data analysis cost-effective processing of multiple and interpretation, further facilitating samples simultaneously, allowing for the exploration and understanding of the discernment of a broad spectrum gut microbial communities. of bacterial taxa.

The strength of 16S rRNA sequencing Precise and database-compatible further stems from its reliance on In essence, 16S rRNA sequencing extensive public databases such as emerges as the optimal choice SILVA, Greengenes and the Ribosomal for deciphering gut microbiome Database Project (RDP), which composition due to its affordability, enhance the method’s credibility. precise gene targeting, compatibility Leveraging these repositories with modern technologies, utilisation allows scientists and researchers to of extensive databases and adherence compare and classify their sequences to standardised protocols. These accurately, drawing upon the collective attributes collectively render it wisdom of the scientific community in a robust and reliable method for the area of microbiome research. studying the diverse bacterial ecosystems within the gut.

Page paid for by Chuckling Goat Find out more at chucklinggoat.co.uk

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Why some teenagers still wet the bed — and what can be done about it Teenagers who still wet the bed may have to deal with a lack of self-confidence and a negative impact on their social lives.

Yet, this medical condition can be successfully treated.

B INTERVIEW WITH Davina Richardson Children’s Specialist Nurse, Bladder and Bowel UK

WRITTEN BY Tony Greenway

Paid for by Ferring Pharmaceuticals

This disease awareness article is initiated and funded by Ferring Pharmaceuticals Ltd UK-URO-2400006 April 2024

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edwetting, or the accidental passing of urine during sleep, is extremely common in young children — although, by the age of five, the majority should be dry throughout the night. However, it’s an issue that can persist into and through adolescence, explains Davina Richardson, Children’s Specialist Nurse at Bladder & Bowel UK, an organisation that aims to improve awareness of — and find solutions to — bladder and bowel problems.

Social stigma of teenage bedwetting It’s estimated that between 0.5% and 3% of teenagers still wet the bed. For those who are affected, this can be highly embarrassing and psychologically devastating. “Our teenage years are extremely important,” says Davina. “It’s when we want to fit in with our peers, develop our social lives and gain more independence. But if we’re wetting the bed, the negative impact on our self-esteem can be huge.”

It can also increase anxiety in social interactions.

“After all, how does a young person invite friends back to their house if they’re worried that their bedroom smells?” asks Davina. “How do they have sleepovers?

How do they go on school trips? Teenagers who wet the bed have talked about the burden of ‘carrying a secret’ and how they feel different and isolated because of it.”

When is bedwetting a medical condition?

If bedwetting carries on after the age of five, it’s considered to be a medical condition (although a minority of children will get better in time, without treatment). Davina stresses that parents and carers shouldn’t get angry with a young person who wets the bed because none of us can control what our bodies do when we are asleep.

“Someone who wets the bed is NOT doing so because they are ‘lazy’ and can’t be bothered to get up to go to the toilet,” she emphasises. “They are simply unable to wake up when their brain receives a message that their bladder is full and needs emptying.”

Reasons why young people may be wetting the bed There are numerous underlying reasons why a teenager may be wetting the bed. For example, their bladders may not be working as well as they should; or, if they do not produce enough of an antidiuretic hormone called vasopressin, their kidneys may be making too much urine at night.

If they are constipated, a full bowel can put pressure on the bladder, making it difficult to hold on to urine during sleep. If they have drunk large amounts of liquid before bed, it’s more likely that they will need the toilet during the night.

Stress may also be a factor. Unfortunately, bedwetting disturbs sleep cycles, which increases tiredness and makes it harder for someone to wake up when their brain tells them to. It’s a vicious circle.

Types of help and support for those affected Help is available, says Davina. A school nurse should be able to provide initial support. A GP may be able to refer affected children and young people to a specialist nurse-led service for assessment and treatment. This could include an enuresis alarm, which can be used in some cases to wake up a child as they start to wet the bed. In time, they may become able to wake before they need the toilet or their bladder learns to hold on until the morning.

Medication may also be prescribed to reduce the amount of urine the body produces at night. In some instances, a combination of both interventions may be necessary.

Davina’s message is: if you are a teenager who is affected by bedwetting, don’t suffer in silence. See a healthcare professional. “My advice is always to seek help,” she says. “Because treatment options are available to you.”

Find out more at www.bbuk.org.uk www.ferring.co.uk

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