Continence Foundation of Australia - Bridge Winter issue 2023

National Continence Helpline 1800 33 00 66

A free service staffed by Nurse Continence Specialists who can provide information, referrals and resources 8am - 8pm AEST weekdays. The Foundation, established in 1989, is a not-for-profit organisation.

Published by the Continence Foundation of Australia

Writer and Editor Nicola Reid Designer Rosa Piciocco

ISSN 1836-8107. Online version ISSN 1836-8115.

Bridge is published quarterly by the Continence Foundation of Australia. It is supported by the Australian Department of Health and Aged Care under the National Continence Program.

The information in Bridge is for general guidance only and does not replace the expert and individual advice of a doctor, continence nurse or continence physiotherapist. Bridge cannot be reprinted, copied or distributed unless permission is obtained from the Continence Foundation of Australia.

Advertising The Continence Foundation of Australia appreciates the support of advertisers in publishing Bridge. Advertising conforms to the standards required by the Continence Foundation of Australia, but endorsement is in no way implied by the publishing of said material.

References For a list of references for any articles appearing in Bridge, please email bridge@continence.org.au

Become a member of the Continence Foundation of Australia and receive many benefits including discounted registration to the annual National Conference on Incontinence, free publications and timely information about events and education courses.

Email membership@continence.org.au or Phone 03 8692 8400.

The Continence Foundation of Australia greatly values the stories people share of living with or caring for someone with incontinence. Reading the experience and advice of others can make a huge difference to someone in a similar situation. If you would like to share your story with us, please register on our website. Go to www.continence.org.au/life-incontinence/personal-stories#sharestory

Unless otherwise indicated, the photographs used in Bridge are those of models and bear no resemblance to the story.

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NOTE FROM THE CEO

Welcome to the Winter edition of the Bridge Magazine. In this issue we acknowledge World Continence Week, 19 to 25 June, and the lived experience of incontinence. Over five million Australians, one in four people, aged 15 years or over, experience bladder or bowel incontinence. In this edition, we share the stories from a diverse range of people with lived experience, including Hawthorn Premiership hero and Brownlow Medalist Robert (Dipper) DiPierdomenico.

With stories featuring prostate health we also acknowledge International Men’s Health Week, 12 to 18, June which highlights the importance of men’s health; not just their physical health, but also their mental health and emotional wellbeing.

Each story is as individual as those who share them, and the Foundation greatly values these. We hear from men and women, both young and older. Sharing these stories may help others in a similar situation and encourage them to seek help.

In recognition of World Continence Week, the Foundation has a variety of resources including posters, social media tiles, a newsletter and other resources to help promote awareness and understanding of incontinence during this very important week. You can find these at World Continence Week resources

We are also excited to launch our new podcast series This is my story where we share the real and raw journeys of Australians who experience incontinence. Listen as diverse perspectives are shared on this common but manageable condition. Let's start the conversation. #ThisIsMyStory #IncontinenceAwareness. You can listen to the podcasts here

It is also important to reinforce that incontinence is not just a woman’s or an older person’s issue, nor is it an inevitable part of ageing. Incontinence is a common condition that can be treated and proactively managed. Seeking advice from a health professional is the first step to recovery.

Please share this edition, particularly with those who might be encouraged to seek help by reading the lived experience of others. If you would like to share your story, please register on our website - share your story. Anyone looking for more advice and information about bladder, bowel and pelvic health can phone the National Continence Helpline on 1800 33 00 66 or visit our website continence.org.au

Rowan Cockerell, CEO, Continence Foundation of Australia

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The Foundation is working on a rebranding process and would welcome your input. If you are interested in participating please scan the QR code.

WORLD CONTINENCE WEEK - 19 TO 25 JUNE 2023

THE LIVED EXPERIENCE OF INCONTINENCE

Over five million Australians, one in four people aged 15 years or over, experience bladder or bowel incontinence. Incontinence is not just a woman’s or an older person’s issue, nor is it an inevitable part of ageing. Incontinence can affect people at any age, but in many cases, it can be prevented, better managed or even cured. Seeking advice from a health professional is the first step to recovery.

This World Continence Week we hear the stories of those with lived experience of incontinence and encourage others to seek help to enable them to live confident, continent lives.

Story telling serves an important function in understanding the lived experience. Telling their story may help a person find meaning in their condition. Story telling also facilitates awareness, education and empathy, allowing others to relate and encouraging them to seek help and support to change their own narrative.

The Continence Foundation of Australia greatly values the stories people share of living with or caring for someone with incontinence. Reading the experience of others can make a huge difference to someone in a similar situation. If you would like to share your story with us, please register on our website at share your story

Over five million Australians, one in four people aged 15 years or over, experience bladder or bowel incontinence. Incontinence is not just a woman’s or an older person’s issue, nor is it an inevitable part of ageing.

DIPPER YOU DON'T HAVE TO PUT UP WITH IT

Ever since an article about Robert (Dipper) DiPierdomenico’s experience with urinary retention was published in the Herald Sun Newspaper in December 2022, he has been continuously approached by people with similar stories. “What they commonly say to me is this is happening to me too, what should I do?” he says. Sometimes he is approached by women who’ve recognised similar symptoms in their male partners and want them to seek help. “My advice is to always go straight to your GP,” he says. “Help is available so go and get it so you can get on with living a better life.”

“If you had a broken arm, you’d go to the doctor to get it fixed right?” says Dipper. “So why not go to the doctor and say, I’m not peeing properly? Too many men ignore their symptoms and think they will just go away, but what I’ve learned is this can affect your life forever and you don’t have to put up with it.”

When a celebrity with a reputation for toughness and invincibility on the football field publicly reveals his vulnerability and what it meant to delay seeking help, others might just heed the message. Whilst he has dealt with many football injuries during his career, including famously playing with a punctured lung and broken ribs to see Hawthorn win the 1989 Australian Football League (AFL) Grand Final, nothing prepared him for the pain he experienced with urinary retention.

Dipper is a keen advocate for men’s health awareness and openly shares his story to encourage men to get regular health checks, pay attention to the warning signs and not suffer in silence.

Admitting he wished he had sought help earlier, he says “we men tend to think we’re invincible and we must put up with pain, but my body was telling me something was wrong. The crunch for me came when the pain became so bad, I was forced to go to the hospital's emergency department.”

Robert DiPierdomenico, Picture courtesy Herald Sun

A couple of years earlier, Dipper had started to notice that he was needing to urinate more frequently but was passing less each time. This progressed to needing to urinate between 30 to 40 times a day and sometimes 10 to 15 times a night. He would often have to pull over when driving to urinate and was also experiencing regular leakage and needed to wear incontinence pads. With a constantly busy schedule, attending functions and regular speaking events, he didn’t want to be caught short, but says trying to discreetly buy continence pads in his local chemist was challenging. “It’s a whole new world with different sizes and choices and you feel so self-conscious, hoping no one will recognise you or see what you’re buying,” he says. However, he now acknowledges this is the reality for many men, some of whom will need to manage incontinence permanently.

A turning point for Dipper was when he had visibly wet himself at a Christmas party on a boat on Sydney Harbour. He was touched by the genuine concern his friends and colleagues showed for him at the time, but he was angry with himself for not doing something about it earlier. “I could see how worried my mates were for me and I just wish I had got help sooner,” he says.

Initially, Dipper had thought his symptoms were due to the type two diabetes he had been diagnosed with earlier, however as the symptoms became more intense and increasingly painful it was clear that something else was wrong. When he presented to a hospital’s emergency department, he was eventually diagnosed with urinary retention, a condition where the bladder does not empty completely and there is a lot of urine still left behind. There are several potential causes of urinary retention in men, the most common being an enlarged prostate, known as benign prostatic hyperplasia (BPH). This was the case for Dipper who then had a transurethral resection of the prostate (TURP). This was successful, however, he still experiences challenges with occasional leakage.

Dipper has also experienced the dilemma of being out and about and not having anywhere to dispose of used incontinence pads. A keen supporter of the BINS4Blokes campaign, he would like to see more incontinence product disposal bins in men’s toilets in function centres and sporting venues, to help men living with incontinence to get out in their communities with confidence.

Robert DiPierdomenico

My advice is to always go straight to your GP,” he says. “Help is available so go and get it so you can get on with living a better life.”

Dipper is a founder of The Good Blokes Society, which provides a platform for men to develop their social and business relationships. He is a regular speaker at their lunches, using these forums as an opportunity to tell his story and promote men’s health awareness. “Talking openly and honestly can be difficult for men,” he says, “but I’m pleased to see more men are opening up and sharing at these meetings. It’s so important for men’s physical and mental health to share information and experiences.”

Asked if he would like to see education on pelvic floor health and exercise integrated into training for football players, Dipper is extremely supportive. “It’s just another muscle the body needs to function properly and when you know about it, you realise just how important it is,” he says. “Do your pelvic floor exercises and make sure you are doing them correctly. I thought I was, but Dr Jo Milios (men’s health physiotherapist) helped me to understand I was doing them all wrong. I know how to do them now and I’ve definitely seen improvement.”

Robert (Dipper) DiPierdomenico is a Hawthorn premiership hero who played 240 games for the Hawthorn Football Club during a sixteen-year career. He won five premierships and the Brownlow Medal in 1986 and was integral to the Hawks’ dominance of the AFL competition during the 1980s.

If you are unable to pass urine, please seek urgent medical assistance. If you have bladder pain, go to the toilet numerous times during the day and night, or you develop incontinence, please seek medical attention as soon as possible or call the Foundation’s National Continence Helpline on 1800 33 00 66 for advice. You may need to be referred to a continence health care professional.

WHAT IS BENIGN PROSTATIC HYPERPLASIA?

It is normal for the prostate gland to get bigger as men get older. For some men this can cause bladder problems. The changes to the prostate gland happen over many years.

Benign prostatic hyperplasia (BPH) is when the prostate gets gradually larger. This often starts in middle age, and it is normal for the prostate gland to get bigger as men get older. For some men this can cause bladder problems. There are many successful treatments for prostate problems and around one in four men will need surgery.

WHAT IS TRANSURETHRAL RESECTION OF THE PROSTATE?

Transurethral resection of the prostate (TURP) is a surgical procedure to remove excess prostate tissue that is blocking the urethra or the flow of urine. It helps to reduce the symptoms of an enlarged prostate

A keen supporter of the BINS4Blokes campaign, he would like to see more incontinence product disposal bins in men’s toilets in function centres and sporting venues....”

I would like to say that the new X-Dry pull ups and pads are amazing and a huge hit with my staff. I have sent all information to the support coordinator regarding getting our supplies from Noble Healthcare. My participant stays dry all night and so does her bedding. All other products that we have used have never worked as well. We are also very impressed with the cost and the support that we have received in relation to our needs for our participant. The team at Noble Healthcare have provided fast delivery, amazing customer service and make it very easy to order.”

Team Leader - Mercy Connect

CAITLYN DAVEY LEADING BY EXAMPLE

“I want to raise awareness about incontinence, open the dialogue and encourage people to feel comfortable talking about it,” says Caitlyn Davey, a journalist who lives with a neurogenic bladder. Caitlyn’s condition means she does not have control over her bladder and needs to self-catheterise, emptying her bladder with a catheter at regular times during the day, for the rest of her life.

“I’m 34 years old and I feel very alone as a young person on this journey,” says Caitlyn. “I want to reach out to others because living with a chronic health condition can be isolating and scary, particularly if you don’t have people to ask questions of or confide in. I thought I’d lead by example, by sharing my story in Bridge Magazine.”

Caitlyn’s journey began when a pandemic changed the world. She had been living and working as a journalist in Dubai for eight years but lost her job when COVID-19 hit, along with her visa and healthcare cover. Around the same time, she started to feel unwell. Health insurance is privatised in the United Arab Emirates (UAE) and expensive. Once Caitlyn lost her job, she had no health insurance and would have to cover any medical expenses herself.

Locked into a 12-month real estate lease, and with Australia rapidly closing its borders, Caitlyn thought she would be able to just wait out the COVID-19 wave and start wrapping up her life in Dubai. However, like so many of us at the beginning of the pandemic, Caitlyn had no idea just how long this would take. She was also becoming increasingly unwell, losing 14 kg over a few months as she was unable to eat and waking at night with abdominal pains, sweating and dizziness.

Looking back on the time when she first started experiencing symptoms, Caitlyn says what she thought had been a few months turned out to be a whole year. She describes a steady decline in her health over this time, with a significant drop in energy levels, but says she just adapted to functioning at a lower level. Before she lost her job, she had sought medical help, reporting she was exhausted and had stomach cramps and no energy. This was unusual for Caitlyn, who had always been very active, doing cross fit most mornings and playing basketball after work at night, but she found it all had to stop. “I said this is not like me, I’m used to being busy and active, but now I’m doing less and less and finding myself more and more exhausted.”

At the time, the doctor thought perhaps Caitlyn’s symptoms were due to her being vegetarian, possibly low in iron or anaemic, or her body was fighting a virus. Caitlyn says she went back to the doctor three times, once feeling very dizzy and concerned she might faint, but was diagnosed at the time with anxiety. It turned out to be kidney failure, something Caitlyn wasn’t to discover until she returned to Australia.

Caitlyn Davey

By the time she was finally able to get back to Australia, Caitlyn saw a GP who immediately ordered a barrage of tests. Two days later, it was revealed she had kidney failure and needed to be hospitalised. Her glomerular filtration rate (GFR) was 17; in a healthy person the expected GFR level is usually 90 or higher. After being admitted to the renal unit in a public hospital, the renal specialist told her “your kidneys are failing, but we don’t know why and the best thing to do right now is admit you.”

So, less than a week and a half after returning from the UAE, Caitlyn was admitted to hospital. There it was found that her bladder was greatly enlarged, distended and infected. A catheter was put in that night and Caitlyn describes excruciating agony as blood clots and more than three litres of urine were emptied from her bladder overnight.

A week in the renal unit was followed by surgical exploration, a biopsy, an MRI and numerous blood tests. Caitlyn’s case was so unusual and complex, several specialists were involved, including the infectious diseases team who were brought in to rule out a parasitic infection. Finally, after three weeks of being in and out of hospital, a tumour was found on Caitlyn’s spinal cord.

Although the tumour was benign, it was inside the spinal cord and had damaged the nerve endings between her brain and her bladder. “So literally my brain couldn’t tell my bladder it needed to be emptied,” says Caitlyn. An emergency operation was performed to remove the tumour but unfortunately the damage to the nerves had already been done.

Caitlyn does not receive the brain signal to empty her bladder, so after the surgery she had to learn intermittent self-catheterisation, which she was told would be a lifelong process. Other treatment options may be considered in the future, but Caitlyn says for

now she is mostly in a situation of ‘damage control.’ Her kidneys are still very much affected and whilst her GFR has increased to 50%, that has taken three years. It also took time for the pressure in her bladder to reduce and she is monitored regularly to ensure the tumour has not returned.

Caitlyn needs to remember to self-catheterise regularly throughout the day. “It can be very stressful, and I need to be really careful using catheters to make sure I don’t get urinary tract or bladder infections and risk any further damage to my kidneys,” she says. “I also still experience debilitating fatigue one to two days per week which can knock me out and force me to just rest.”

Caitlyn had clearly been in a potentially lifethreatening situation and needed support to process what she had been through. She says working with a psychologist has been enormously beneficial in helping her to deal with the mental and emotional challenges of her journey. She was diagnosed with post-traumatic stress disorder (PTSD) and later also attention deficit hyperactivity disorder (ADHD) which manifested as agitation and forgetfulness. “I have to make sure I take catheters everywhere and I have trouble because I often forget,” she says. “Without catheters, everything grinds to a halt. I have a bag which contains portable catheters but sometimes I forget it and I might be at work and need one immediately, so I have to get someone to put some in a bag and then an uber to get to me as soon as possible.”

Having been caught short before, Caitlyn says she’s getting better at remembering to take her catheter bag with her and always has a backup one in her car now but needs to always be prepared. “I’m so lucky I can go swimming comfortably and do the sport that’s so important to me, but on the flip side of that, if I don’t have a catheter with me, life grinds to a halt. And you can’t just nip into a chemist and get one as they don’t sell them,” she says.

I had felt ashamed at the start, but now I want to talk about it and I want people to know because it is something that impacts my life and it impacts a lot of people’s lives..."

Caitlyn Davey, Dubai

THE MENTAL AND PSYCHOLOGICAL CHALLENGES

Not surprisingly, Caitlyn has been faced with numerous other challenges on her health journey. “People can’t see my condition so they may not necessarily understand that I have a special need to use a disabled toilet,” she says. “I can get very negative and stressed about my situation but then I counter that with thoughts like thank God I got back to Australia and I’m alive and I have this phenomenal medical team on this journey. I get to do what I love. I get to work and play sport and chase my nephews, which is my favourite thing to do. As long as I have those things it helps to keep things in perspective.”

These days, Caitlyn carries her catheters and equipment in a pencil case everywhere. “At the start I worried that people might see me carrying it to the toilet and wonder if I had my period,” she says, “but you know what, people don’t care and if they do, why don’t I talk about it? A friend said is that your period bag and I said no and shared with her that I have continence issues and I use catheters and that opened her eyes and she was more compassionate towards me which I really valued.”

“I had felt ashamed at the start, but now I want to talk about it and I want people to know because it is something that impacts my life and it impacts a lot of people’s lives. It took time for me to be okay talking about it but now I really want to open the dialogue and normalise discussion around incontinence. So many people experience it and I want them to feel supported and accepted,” says Caitlyn.

Caitlyn is currently preparing a series for ABC News on the lived experience of incontinence, particularly in young people, to be released during World Continence Week (19 to 25 June). She says she can approach this topic with the sensitivity and insight she has from her own lived experience.

“This whole health journey has profoundly changed me as a person and has made me appreciate life so much more,” says Caitlyn. “The purpose of the ABC series is to open conversations, share stories and help normalise the discussion around incontinence, which I think will be valuable. People tend to think it’s only older people or women who’ve had children who need continence aids, but I don’t fall into either of those categories. I particularly want to connect with people around my age who may have incontinence due to other causes and share our stories.

WHAT IS A NEUROGENIC BLADDER?

Neurogenic bladder, also referred to as neuropathic bladder, is a condition where a person’s bladder control is affected by a brain, spinal cord or nerve problem. The lower urinary tract (LUT) is controlled by the nervous system (central and peripheral) and any damage to the nervous system by illness or trauma may result in disturbance of LUT function, including incontinence, inability to empty the bladder completely, urinary urgency (or rushing) and urinary frequency (or going often to the toilet).

Nerve damage may be associated with conditions like multiple sclerosis (MS), Parkinson’s disease and spina bifida. It may also be the result of a stroke, spinal cord injury, major pelvic surgery, diabetes or other illnesses.

WHAT IS THE GLOMERULAR FILTRATION RATE?

The glomerular filtration rate (GFR) is a test used to measure how efficiently the kidneys are working, in particular how well they are filtering waste from the blood. The kidneys have tiny filters called glomeruli and a GFR test estimates how much blood passes through these filters each minute. The test is used to help diagnose kidney disease or monitor those with chronic kidney disease or conditions that could cause kidney damage such as diabetes or high blood pressure.

WHAT IS INTERMITTENT SELF-CATHETERISATION?

Intermittent self-catheterisation (ISC) involves a person inserting a catheter (or small hollow tube) via their urethra (wee tube) into their bladder to empty out any urine. The catheter is then removed and discarded. The person is taught ISC by a nurse or doctor and advised on how many times per day they need to do it to keep their bladder healthy, reduce their risk of urinary tract infections and leakage.

JOHN'S STORY THE IMPORTANCE OF PEER SUPPORT

“It’s so important to talk about incontinence and it helps to raise awareness, acceptance and understanding,” says John who experienced incontinence for the first time after prostate cancer surgery. Whilst he doesn’t deny it was a shock, he wants to talk openly in the interest of supporting others. “If we talk about it, it’s easier for others to understand the issue and remove the barriers to seeking help,” he observes.

Anyone dealing with incontinence for the first time will know how challenging it can be, including feeling self-conscious when shopping for incontinence pads. When his local chemist advertised incontinence pads at half price, John decided to stock up but felt awkward and embarrassed. Trying to cover this up with humour he said to the mature age woman at the counter, “isn’t it terrible it’s come to this?” Her unexpected response was, “darling, the good thing is these are available for all of us to use.” John understood, she was probably speaking from a lived perspective herself. “It was a very positive experience,” says John, “as I went from feeling terrible, to being told it was actually okay.”

At the time, John was experiencing what he describes as vague bladder symptoms, such as not finishing urinating properly and some bowel symptoms. When it came to regular health checks and awareness, John said he was always ahead of the game as his father died from prostate cancer at the age of 68. Additionally, with breast cancer affecting most of the women on his mother’s side, John always had a strong awareness of his genetic cancer risk. However, when COVID-19 struck, and everything moved to digital and telehealth, he was one of the many people not able to access regular physical check-ups and blood tests.

It’s so important to talk about incontinence and it helps to raise awareness, acceptance and understanding,”

When John was finally able to see his doctor in person and have the necessary tests, the outcome was not good. His doctor said, “I’ve got your results, you’ve got high prostate specific antigen (PSA), an enlarged prostate and various growths on your kidneys.” When he next saw his doctor, John asked him to go over the results again, so that he had a clear understanding of what was going on. From there things moved very swiftly. John’s doctor gave him the names of three urologists and advised him to see the first one available. He saw one within the next fortnight and had more tests including ultrasounds and computed tomography (CT) scans. The urologist identified there were growths on both of John’s kidneys he was concerned about and a large shadow over the prostate gland which was most likely a tumour.

A digital examination revealed the prostate was significantly enlarged and it was necessary to do a biopsy. The next day the urologist rang and said, “it’s not good news, John. You have a very aggressive form of prostate cancer.” John says, “I was knocked for six and asked what about my kidneys?” The surgeon said the urgent priority was the prostate cancer and with a Gleason score of 9, it needed to be dealt with immediately. The decision to proceed with surgery depended on the results of a PET scan to determine whether the cancer had spread to other organs in the body. Fortunately, the cancer was contained, and the surgery was scheduled to proceed. Additionally, the growths seen on John’s kidneys turned out to be benign.

John says it all happened so quickly he wasn’t prepared for what to expect. The surgery to remove his prostate was complicated and took six hours. It was found that instead of being the usual walnut size, his prostate gland was about the size of an orange and was attached to and putting pressure on his bowel. John woke up in the hospital’s Intensive Care Unit and had a catheter in for the next two weeks.

John says there was so much to deal with in such a short space of time and it was overwhelming. He was grateful to have been shown how to do pelvic floor muscle exercises correctly prior to surgery and was keen to continue afterwards, working with both a urology nurse and pelvic health physiotherapist. However, he found he needed to wear continence pads for the next four months. “That took a lot to get my head around and you feel like you’re never going to stop wetting yourself,” he says. “It just felt like a never-ending road.”

WHAT IS PSA?

Prostate Specific Antigen or PSA is a protein produced by normal, as well as cancerous cells of the prostate gland. The PSA test measures the level of PSA in the blood. The blood level of PSA is often higher in people with prostate cancer, but also with other prostate conditions such as benign prostatic hyperplasia (BPH) or enlargement of the prostate and prostatitis (inflammation of the prostate).

WHAT IS A GLEASON SCORE?

The Gleason scoring system is used to show how abnormal or different the cancer tissue is, when compared with normal tissue. The two most common patterns of growth seen in the biopsy sample are each given a number from 1 to 5, and then these two numbers are added together to give the Gleason Score (e.g., 4+3=7). The greater the difference from the normal tissue pattern, the higher the Gleason Score, the more aggressive the cancer is in the body.

Information provided with permission from the Prostate Foundation of Australia - https://www.pcfa. org.au/media/430563/Diagnosis.pdf

WHAT IS A CT SCAN?

A CT (or CAT) scan is a medical imaging technique which takes x-ray images of what is happening inside the body. It is used to diagnose tumours or check for internal injuries, tissue damage or bleeding.

WHAT IS A PET SCAN?

A PET (positron emission tomography) scan is an imaging test that uses radioactive material to detect diseases, in particular cancer and the evaluation of cancer treatment.

WHAT IS THE LYMPHATIC SYSTEM?

The lymphatic system helps to balance the fluid levels in the body and supports the immune response to infection or disease.

Rhiannon in Positano, Italy

THE MENTAL AND PHYSICAL TOLL

“When you’re confronted with something like this, it affects your confidence and self-esteem and your levels of anxiety go up. I withdrew socially to a significant extent,” says John.

In the early days after his surgery, John didn’t go out much at all and was always anxious when he did, even when wearing incontinence pads. “Once I had an accident and wasn’t even aware I was wetting myself until I felt it going down my leg. I was wearing blue jeans at the time and it wasn’t a good look,” he says. “It was awful having accidents because you just want to go home without anyone noticing and quietly withdraw. So, I was very cautious about going out for a long time. Sometimes just being in a car, and even getting in and out of a car, were initially challenging because I could easily leak. I was paranoid about being in so many situations where this could happen and I was always worried that I might smell.”

John mentions everything he has been through has had a big psychological impact, especially experiencing being both incontinent and impotent as many men do. “I was in shock for months. When they removed the prostate, they rejoined the two ends of the urethra and in my case that changed my penis length. It was all very challenging.”

When John’s urology nurse asked him to reduce his continence pad down a size in absorbency, he felt very challenged and anxious about wetting himself. However, she insisted it was time to retrain both his body and mind to get things working together. The next step after that was to not wear a pad at all with the aim of reducing his dependence on them long term. After having had a couple of accidents, this was again unnerving for John. For security he initially chose to wear double underwear instead and black tracksuit pants became his favoured choice of clothing.

However, John found his incontinence improved significantly and relatively quickly. He can still experience leakage from coughing or any jarring movement, but hasn’t worn a pad for some time. He wears underwear with an inbuilt continence pad that is washable which he recommends to his prostate cancer peer support group. Not one to miss out on a bargain, John noticed there was a special discounted price on this underwear at his local department store and says he bought the lot. He distributed them

amongst his peer support group, also offering them to his work colleagues, many of whom discreetly took him up on his kindness. John is continually motivated to help others. With what he’s experienced, he is full of ideas, tips and tricks to improve his own quality of life and that of those around him.

John says many men experiencing incontinence tend to withdraw socially and are hesitant to go out. “I didn’t want to embarrass myself publicly so I would wear pads and take extra ones with me, as well as zip lock bags to put the used ones in as most male toilets in public places did not have a disposal bin, even the ones in the hospital where I saw my urologist which really surprised me,” he says. “I think BINS4Blokes is such an important campaign and I’ve lobbied in my workplace to make something similar happen,” he says.

John works at Thorne Harbour Health (previously known as the Victorian AIDS Council) where he says there are sanitary pad disposal bins in every toilet. He asked if men’s incontinence pads could potentially be put into these bins as well and the answer was yes. John provided that important feedback to the Occupational Health and Safety team who now also provide sanitary and incontinence pads in both their male and female toilets.

John says “I am consistently surprised by the ignorance and lack of knowledge many men have around their health and even knowing what the prostate gland does. When I try to talk to my male friends about PSA, prostate cancer or incontinence none of them want to know. When I ask them about their health checks, they can be quite dismissive and reluctant to talk about their health.”

John is a dedicated member of Prostate Pride, a cancer peer support group for the LGBTQI+ community impacted by prostate cancer, which is affiliated with the Prostate Cancer Foundation of Australia. John says the group provides a forum for people to share their experiences and raise awareness of prostate cancer. Each person updates where they are at on their journey, what treatments they are having and how they are feeling in a safe, confidential environment.

I was paranoid about being in so many situations where this could happen and I was always worried that I might smell.”

Not uncommon amongst those who’ve had cancer is the fear of recurrence. John says the medical staff he dealt with were frank about this, warning him that once you’ve had cancer every ache or pain will make you wonder if the cancer has returned. He has been reassured this is a normal way to think but often it’s not the case that cancer is returning. “It’s easy to overthink things which is perfectly understandable,” says John.

John describes his current situation as living with cancer while the specialist deals with the 'hot spots' and the spread through the lymphatic system. “It’s inspiring to see some of the other men who do the physiotherapy classes who were diagnosed many years ago, some over ten years ago, and they’re still boxing on. I need to see that. I can be knocked around if I hear of someone dying, but I try to pick myself up and not dwell on my situation and just live each day as well as I can,” he says.

“I’m still very aware of what I need to do and how I manage things, including doing my pelvic floor exercises to keep on top of it,” says John. He no longer lives with the unpredictability of accidental leakage but is wary it can still occasionally happen when sneezing or coughing. “One of the men in my peer support group is still struggling with being incontinent and his confidence has been shattered. I asked him how he was going the other day and he just burst into tears. I told him it will get better. It may take time, but you are doing the right things and you need to keep going and ask for the support that is there,” says John.

John wants to strongly reinforce the key message that help and support are available. “People need to know there is information out there and how to find it easily, but I do think the stigma of incontinence restricts people from seeking help and advice,” he says. “It’s a big deal to say, ‘I’m incontinent or I’ve got an issue with continence.’ Overcoming all that and the issues with self-esteem and confidence is challenging but I’m here to tell people it does get better.”

John’s key messages to all men include regular health checks, especially getting your PSA checked regularly, asking for the results and requesting any medical tests or examinations you think you need if you have any concerns at all.

He also encourages men to seek out the support and information that is available.

The Prostate Pride – Cancer Peer Support Group meets monthly in Abbotsford, Melbourne.

Email: prostatepride@gmail.com

Phone: 0412 106 441 or 0422 566 862

The Prostate Pride group is recognised by the Prostate Cancer Foundation of Australia (PCFA). They have more resources and information on their website. You can also contact the PCFA to find support groups in other states.

The Australian Prostate Centre has information and referrals.

MARGARET'S STORY IF I CAN HELP SOMEONE ELSE, I'M HAPPY

Margaret is a perfect example of a woman in her 70s who is busy, active and living her best life despite having to manage a challenging and sometimes changeable daily bowel routine.

Approximately seven years ago, she noticed that her bowel wasn’t emptying properly and had become much slower. As she became increasingly constipated, she also began to experience headaches, nausea and fatigue. Margaret was diagnosed with a type of rectal prolapse known as internal intussusception, where the rectal wall collapses or telescopes upon itself. She has seen many health professionals, including gastroenterologists, colorectal surgeons, dietitians, pelvic floor physiotherapists and nurse continence specialists.

Margaret has had several procedures including a rectopexy, a procedure to repair her prolapse. This worked briefly, but eventually her rectum collapsed again. Her colorectal surgeon advised against any further surgeries, including an ileostomy which she would prefer to avoid unless it is necessary.

Margaret currently needs to take up to six or seven laxatives per day to get her bowels moving effectively. This is usually a combination of stimulants to make the bowel more active and stool softeners to make passing a bowel motion more comfortable. She also makes sure she eats well, includes fermented foods such as sauerkraut and kefir in her diet and takes a daily probiotic and vitamins. Regular exercise is also an important part of her daily routine, aiming for 10,000 steps per day.

Margaret has tried a variety of treatments and therapies in her self-help journey. She does pelvic floor exercise classes and sees a chiropractor regularly and says she is fine tuning her life and her bowel management all the time. In the last two years, she has developed a good relationship with the nurse continence specialists who work on the Foundation’s National Continence Helpline – 1800 33 00 66. Margaret feels fortunate to be able to call the Helpline when she requires information and support. She says she found out about the Helpline when researching on the internet.

Always reading, researching and willing to try new medications and other options, Margaret often calls the Helpline for guidance. “It’s lovely to have that support and the nurses always have useful advice,” she says. “When I take the stimulants, they can interfere with my sleep. I was having trouble with this, and the nurse suggested it might be better to take them early in the morning instead. This worked so much better for me. All those recommendations are so useful and the nurses have been a great help.”

Margaret’s situation has made her hesitant to travel for fear not only of accidents, but also not being able to manage her bowel function or access the support she may need whilst away. Anxiety around this has been a big issue for her. “We’ve travelled so much over the years but as my condition has

People need to communicate. I talk openly with those closest to me, so I’m not always having to explain myself..."

worsened, I now get more stressed about it,” says Margaret. “I would love to take my grandchildren to Fiji for a holiday, but I’m worried that something might happen whilst I’m away and I won’t be able to manage,” she says.

“Even daily, I can’t just pop down to the shops spontaneously. Everything is planned around when I take my medications, then wait for my bowels to move, so I’m usually at home in the mornings. It doesn’t prevent me from doing things, but it does involve a lot of planning and of course I always need to know where the nearest toilet is,” says Margaret. Constantly having to plan her day around her medications and bowel movements can be very tiring, but Margaret says she perseveres and has been grateful for the care she has received from her colorectal surgeon, as well as the support team of nurses and physiotherapists who have been an important part of her journey.

“People need to communicate,” she says. “I talk openly with those closest to me, so I’m not always having to explain myself. It can be very frustrating for someone dealing with this, but support is out there. You just need to search for it like I did.”

Margaret mentions she is pleased to share her story and offer support to anyone who is experiencing something similar. “If I can help someone else, I’m happy,” she says.

WHAT IS INTERNAL INTUSSUSCEPTION?

Internal intussusception is a type of rectal prolapse where a part of the rectal wall folds down on itself like a telescope and can block or obstruct the bowel. The rectum stays inside the body and does not protrude out. This may result in constipation, incomplete emptying of the bowel, incontinence, or may sometimes be asymptomatic (i.e. no symptoms).

WHAT IS RECTOPEXY ?

Rectopexy is surgery to repair rectal prolapse, which is when part of the rectum or large intestine collapses and may come out of the anus. Rectal prolapse can lead to an inability to control bowel movements and stool can leak from the anus. Rectopexy surgery restores the rectum to its usual position in the pelvis.

WHAT IS ILEOSTOMY ?

An ileostomy is performed to help direct digestive waste or faecal matter, out of the body, often due to a bowel condition such as bowel cancer, inflammatory bowel disease (e.g., Crohn’s disease) or bowel trauma. This involves surgically making an opening that connects the small intestine to the outside of the abdomen. For some people, this surgery is temporary, often to allow the large bowel or anus to recover and can be reversed once the body has healed.

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STEPHEN JONES FINDING HEALING THROUGH POETRY

My name is Stephen Jones and I am recovering from cancer. I am 58 years of age (56 at time of surgery). I have a beautiful, supportive wife, Robyn and three adult children.

My cancer is of the prostate gland, a part of the body that is hidden deep in the recesses of the pelvic region in males. It’s not outwardly visible, its rarely spoken about and most men don’t even know its function. I didn’t really know what its function was, even though my father had the same problem 25 years prior to mine.

After some deliberation about what treatment to have, I decided on a radical robotic prostatectomy (RRP) in December of 2020. This surgery removes the diseased gland completely, along with some of the surrounding tissue. I am lucky that there is no longer any sign of cancer.

Incontinence and erectile dysfunction are the unwanted physical side effects of the procedure. Recovery from these issues greatly differs. Some men recover completely, others suffer lifelong problems and never fully recover and then, there are a lot of men in between.

Mental fatigue, loss of self-confidence, loss of selfesteem and loss of connection are the invisible side effects that those recovering often suffer in silence.

My physical recovery continues even after two years, and I am happy to report that I would consider myself 95% recovered from the physical and mental scars of the journey.

MY POETRY

I have never written anything meaningful, never expressed myself with words, never even contemplated wanting to write, but somehow, something in me was woken during my recovery. I could see words; I could feel words. They were a little consuming and seemed to come to me when my mind was in a restful place, on my country walks, while I was at rest, or wake me in my sleep.

These words were very therapeutic for me. They allowed me to express the bad bits, the good bits and everything in between. I wanted to share my story with those following in my footsteps. I wanted them to not feel as alone as I did.

I am extremely anxious when sharing them as some of these are my inner most private thoughts. I have anxiety around them even being worthy of display, but as I have been encouraged by many people who have read my words I want to share them with a wider audience.

Stoic Masculinity

We hide behind our faces of stoic masculinity

Some afraid to smile from behind our manly beards

From behind our etched faces

Faces of character, love, and strength

Our masculinity hides the frailty of fear

It hides our ability to speak

It hides our inner expression

Our willingness to share

Our pride of who we are, what we stand for

Our innate urge to protect, to guide, to provide

Somehow the loss of part of who we are

Burns deep into the fiber of what it means to be us

Our stoic masculinity – that thing we hold dear

We are more than the sum of one part

Take all you want but you will not be able to break us

You may bend us, but you won’t break us

Fear is not weak; it is just an emotion like any other Tears are not weak; they are an expression of sorrow and loss

We are allowed to feel fear and we are allowed to show emotion

And we are allowed to have pride in our stoic masculinity.

© Stephen Jones 2022

HELPLINE Q&A THE COST OF INCONTINENCE

When we think about the cost of incontinence, we mainly think about continence pads or products you wear to contain or absorb any leakage, but there are a lot more expenses faced by someone living with incontinence than this. The cost of incontinence can affect many aspects of a person’s life. The costs may be direct (e.g. continence pads), indirect (e.g. loss of wages due to sick leave) and intangible (e.g. psychosocial costs such as stress and decreased quality of life costs). To summarise, these include:

• Continence products e.g. pads, pants, catheters, bed protection

• Skin and hygiene care e.g. wipes, barrier cream

• Washing e.g. electricity, water usage, washing powder

• Replacement of clothing and bed linen

• Medications for bladder and bowel management e.g. laxatives, medications for an overactive bladder and an enlarged prostate

• Diagnosis and treatment e.g. appointment and/or test expenses, health insurance, out of pocket expenses, equipment purchases such as electrical stimulation devices and bedwetting alarms

• Travel costs to attend appointments e.g. petrol, parking fees etc.

• Wage or employment costs e.g. time off to attend appointments, reduced hours available to work due to continence care/management or lack of facilities

• Carer costs for paid (formal) carers or unpaid (informal family/friends) carers to help with continence care needs.

There are also costs associated with the consequences of incontinence such as skin irritation, urinary tract infections and potential falls. Carers may also bear the costs of physical and emotional exhaustion.

In Australia, there is support for the direct and indirect costs of incontinence. However, it is important to also address the intangible cost of incontinence through care for your mental health needs such as seeing a counsellor or clinical psychologist, or making sure your day includes time for self-care through exercise, mindfulness, meditation and social activities.

The Australian Federal Government and most State and Territory Governments provide some funding for the direct cost of continence products; however, a health care professional is generally needed to assist a person to apply for a continence product funding scheme. Examples of these include:

• Continence Aids Payment Scheme (CAPS) - for people aged five years and over with permanent and severe bladder and/or bowel incontinence, with either an eligible neurological condition or a holder of a Centrelink or Department of Veteran’s Affairs (DVA) Pensioner Concession Card and have an eligible other condition. Funds are provided to go towards the cost of continence products. For more information go to continence. org.au/get-help/financial-assistance/continenceaids-payment-scheme-caps

• Department of Veteran’s Affairs (DVA) Rehabilitation Appliances Program (DVARAP) – for veterans or war widow(er)s who hold a DVA Gold Card or a DVA White Card under which incontinence is an accepted disability. Continence products are provided directly to the recipient. Go to continence. org.au/get-support/financial-assistance/dvarehabilitation-appliances-program

• State and Territory Schemes – most states and territories have a continence product funding scheme for people living in the community with a permanent disability. They have varying eligibility criteria and application processes. Continence products are generally supplied directly to the person, once they have been assessed by a health care professional qualified to do so. To find out more go to continence.org.au/ get-support/financial-assistance/state-andterritory-schemes

For further information on the various continence product funding schemes, please call the National Continence Helpline on 1800 33 00 66 to speak to a nurse continence specialist, who will be able to guide you through the eligibility criteria, explain how to apply for a scheme and direct you to who can support you with the application process.

The Australian Federal Government provides some support to those with direct and indirect continence care needs. These include:

National Disability Insurance Scheme (NDIS) - for people aged under 65 years living with a disability caused by a permanent impairment, continence assessment, continence products and support may be included in an eligible participant’s NDIS plan continence.org.au/gethelp/financial-assistance/national-disabilityinsurance-scheme

• Home Care Package (HCP) - for people aged 65 years and older (or 50 years and older for Aboriginal and Torres Strait Islander people) who need support to stay at home. Continence assessment, continence products and care may be included in a person’s plan myagedcare.gov. au/help-at-home/home-care-packages

The Australian Federal Government provides financial and practical support for carers to aid them in their carer’s role. These include:

Carer’s Allowance – a fortnightly payment for a carer who provides daily care for a person who has a met a care needs score and the carer has met the income test. There is no asset test. Go to servicesaustralia.gov.au/carer-allowance

Carer’s Payment – a fortnightly payment/pension for a carer providing constant care to a person with a severe disability, illness or is frail aged who has a met a care needs score and the carer is under the pension and asset test limits. Go to servicesaustralia.gov.au/carer-payment

• Carer Gateway – provides emotional and practical services and support for carers. This includes support groups, counselling and emergency respite. Go to carergateway.gov.au/

Please call the Continence Foundation of Australia’s National Continence Helpline on 1800 33 00 66 to speak to a nurse continence specialist for free and confidential advice, information and support for people living with incontinence or bladder and/or bowel dysfunction and their carers. The Helpline is available Monday to Friday 8am to 8pm AEST

CARER OF THE YEAR 2023 JENNY ROE

Every year, the Continence Foundation of Australia calls for nominations for the Carer of the Year Award, which publicly acknowledges the vital role that carers play in supporting the health and wellbeing of so many in our community. The Carer of the Year Award was presented during the National Conference on Incontinence in June 2023.

The recipient of the 2023 Carer of the Year Award is Jenny Roe, who was nominated by continence nurse, Bronwyn Peck.

The second challenge for Jenny is that she has now become quite house-bound due to her carer responsibilities. Jenny was a very busy, social person who loved going out, travelling and having a stream of friends and family visit on a regular basis.

She accepts this loss of her freedom and independence most admirably and without complaint. She reflects that she feels privileged to be able to care for those she loves in their time of need.

Jenny’s Mum Joan is 96 and has dementia. Joan requires assistance with most aspects of daily living. Jenny’s Dad Russell is 95 and has cognitive and physical decline. Whilst Joan and Russell receive a small amount of local council assistance with housework and carer support, Jenny provides the bulk of support for her Mum with showering, dressing, toileting, laundry, food preparation and appointments. Care for Jenny’s husband Darryl includes emotional support with his recent diagnosis of Parkinson’s disease, as well as taking him to appointments and reminding him to take his medication. He is also physically and cognitively declining and will need increasing levels of support soon.

Jenny has only recently retired from her life-long career as a primary teacher. She only retired due to the increasing demands of her aging parents and their need for her to be at home. Jenny does not qualify for any financial support from the government for the care that she provides.

Jenny has been caring for both of her elderly parents in their adjoining house for the past three years. Jenny’s husband Darryl has also recently been diagnosed with Parkinson’s Disease and is starting to require more care, so she currently has three people relying on her for assistance.

Jenny is a most accomplished professional, having worked as a senior teacher at a prestigious girl's school until 2022. Providing continence care to others was not within Jenny’s professional experience. Most recently, the greatest challenge for Jenny has been having to assist with personal care, including continence care, for both her parents. Bronwyn writes that it is a challenge having to provide continence and sensitive personal care to your own parents.

As well as caring for these three older family members, Jenny also regularly cares for her grandchildren who spend part of their lives at Jenny’s house, due to parental separation. Jenny’s life is very busy caring for all four generations in her family!

Bronwyn reflects, “as a continence nurse, I am in awe of her endless compassion, and I think we could all benefit from a ‘sprinkle’ of her magic, as she genuinely does believe that her situation is not a burden but rather a privilege.”

Jenny Roe

Jenny Roe with her husband Darryl

Jenny Roe with her parents Joan and Russell

CAREGIVING, DEMENTIA AND INCONTINENCE

When Maureen’s husband was diagnosed with dementia 10 years ago it represented a gradual but significant change in the dynamic of their relationship. “Going from being a wife to a carer, you need to get past that barrier. I think initially it was the grief. For a year or so, I was grieving the loss of my husband, the loss of his ability to look after himself and the loss of intimacy in our marriage.

Then my acceptance in saying, okay, this is where we are at, this is what I need to do, let’s just do it.

It does change, sometimes we can get into a pattern and there are glimpses of almost normal, but I have to be aware that anything out of the ordinary, out of the routine and it’s back to me being full time alongside him and there for everything”.

Over time, as her husband’s care requirements progressed, Maureen became aware that she needed to get more ‘hand’s on’ in assisting him with toileting and personal hygiene.

“But to start personal care, with his continence care needs, it was something! Sometimes, he is up five or six times a night, needing help every time to go to the toilet and get back in bed. He gets to the toilet, and he doesn’t know what to do. I must drop everything and be ready to help”.

Maureen felt she needed detailed practical and helpful advice about assisting with toileting and personal hygiene. However, even with the help of her sons, she couldn’t easily find the specific information she needed.

In 2021-2022 Maureen volunteered to be part of a research team developing a new online resource to help carers such as herself. Her involvement in the project enabled Maureen to share the lived experience of caring for her husband. This has had the additional impact of validating her as a person.

“I found it an absolute breath of fresh air. I was being listened to, I felt supported and safe. I felt really validated as a carer; that I had something worthwhile to contribute. This life experience has not been wasted; I actually have a purpose. I can share what

I’ve learnt in my time, it might help someone else down the track.

Being involved [in this project] was one of the steps for me to get back to living my life and doing something purposeful. It took me from, I’m no good, I’m just a stay-at-home carer, to now saying, hey, you’ve got something of worth, you can still do other things. That was a real confidence booster for me. I’ve been more inclined to make the effort and join church activities. The things that I used to do, I can do again in a different way.”

Maureen was a participant in an advisory committee comprising carers and health professionals. Their role was to advise the research team on the depth and breadth of content in the proposed free online massive open online course (MOOC) titled Caregiving, Dementia and Incontinence https://www.futurelearn. com/courses/caregiving-dementia-incontinence/3. The course aims to optimise safety, respect and dignity, for carers and people living with dementia.

The MOOC is a multimedia experience, with visual and audio learning tools, and a platform for social interaction with other carers. With no prior experience or qualifications required, participants can gain knowledge, skills and resources to assist with toileting, promote continence and manage incontinence in people with dementia. The course is organised over five weeks and informs participants on:

• Coping with the lived experience and communication strategies

• The basics of bowel and bladder function

• Promoting healthy bowel and bladder function and assisting with toileting and hygiene

• Using continence aids and incontinence products, and protecting the skin

• Coping at home, out and about, and accessing information and support.

Since its initial release in August 2022, the MOOC has attracted more than 2,000 participants across 69 countries, far exceeding initial expectations. The MOOC has been very positively reviewed by participants. For more information and a link to enrol click here

Authors: Dr Joan Ostaszkiewicz, Dr Jessica Cecil, Dr Elizabeth Pascoe and Elizabeth Watt