Margaret worked as a nurse continence specialist at Caboolture Community Health in Queensland for many years. People could self-refer to the clinic where they ran a three-month continence treatment program after an initial assessment by Margaret and a pelvic health physiotherapist.

Margaret loved her work as a community nurse, sometimes sharing her own personal journey with incontinence when listening to and supporting her patients.

You see, Margaret's own medical journey began in 2000 when she was 47. At that time, she was working on a medical ward and had developed two herniated discs.

The nurse unit manager, who noticed her limping and in evident pain, sent Margaret to the emergency department (ED) to assess the nerve function in her leg. With no reflexes in her right leg, she was referred to the Royal Brisbane Hospital where urgent spinal surgery was recommended as she was fast losing the use of her leg.

“The pain relief was amazing after the surgery” says Margaret, “but I was completely unprepared for what else happened.”

A couple of months later she started to lose control of her bladder and was advised to have further surgery. Unfortunately, this resulted in Margaret developing both neurogenic bowel and bladder symptoms. She initially had long term constipation, which was followed by recurrent diarrhoea, making her incontinent.

“I put up with this for six months thinking it was the ‘new normal’ then I went to my GP. He referred me to a gastroenterologist who confirmed it was a permanent problem,” says Margaret.

After urodynamic testing at the Royal Brisbane Hospital, Margaret was told she would have to learn to self-catheterise as she had bladder neck dyssynergia. This is where her nursing background was useful. Knowledge and understanding of anatomy and an ability to locate and feel her urethra made it easier. Plus, it was something she could teach others.

“What was initially psychologically devastating became easier over time,” she says. Now, Margaret receives Botox treatment every six months to prevent her bladder from becoming overactive (i.e needing to empty often and suddenly). “It has become a lot more manageable, and I get a lot more sleep now.” she says.

What is bladder neck dyssynergia?

Bladder neck/sphincter dyssynergia - also known as detrusor sphincter dyssynergia (DSD), is a neurogenic disorder where there is poor coordination between the bladder or detrusor muscle trying to contract to empty and the external urethral sphincter relaxing to open. Normally, these two separate parts work together. With DSD, when a person tries to pass urine, the urethral sphincter doesn’t relax properly as the bladder contracts, the pressure in the bladder increases and the urine flow is interrupted or intermittent. This can be the result of a neurological condition like a spinal injury or multiple sclerosis.

A life-changing overseas trip

In 2016, Margaret was excited to receive an invitation to join a cruise ship in the Mediterranean. “It was the first time I had ever travelled overseas,” says Margaret. “It was an absolutely marvelous trip until two weeks into it, I experienced a perforated bowel.''

Margaret’s bowel perforation developed as a result of a bowel obstruction. Unfortunately, there was no capacity to airlift Margaret so she stayed in the ship’s hospital quarters until they reached Crete in Greece, the nearest port with a hospital.

“The doctor on the ship had told me I might not make it,” says Margaret. “I had septicaemia (blood infection/poisoning), peritonitis (inflammation in the abdomen) and pneumonia.”

Once in Crete, Margaret was admitted to a small day surgery hospital. “It was like going back in time,” she says.

Things were moving fast. After an x-ray and CT scan, Margaret went directly into surgery. “They put a piece of paper in front of me and asked me to sign it, but it was all in Greek and there was no one to translate,” says Margaret.

As she was wheeled into a tiny theatre, the anesthetist and his assistant tried to tell her what they were going to do using sign language. Then, Margaret started vomiting. The situation had quickly become life-threatening.

“The Greek surgeon saved my life,” says Margaret. “I woke up with a stoma and a bag on both sides of my abdomen and tubes everywhere, but I was alive.”

Margaret’s daughter flew to be at her side from Australia. She helped Margaret negotiate the hospital and language differences. In preparation for her flight home, she practiced climbing stairs daily with her daughter as she would need this skill to board the airplane. She was finally sent home to Australia after ten days, accompanied by a critical care nurse. “I didn’t cry once until the plane started coming in over Brisbane airport. It was sheer relief. I did everything I had to do to get through but when that plane flew over Brisbane I just started crying and couldn’t stop.”

Margaret is full of praise for the ship and its crew, particularly the ship’s doctor. “I think the only reason I survived was because of the powerful antibiotics they gave me,” she says. “I was put onto them straight away and I think that’s the reason I pulled through.” She says she cannot recommend having travel health insurance highly enough as it covered all her medical costs, including a personal care nurse who travelled home with her.

Margaret’s reflections

This is a story of incredible human strength and courage, with what Margaret experienced so far from home but also in how she’s managed her life since that time. While she is thankful for her opportunity to travel in Europe, she is also aware that this medical emergency could have had a very different outcome. “(Europe) was the most awesome experience because it was totally outside anything I’d experienced before,” she says. “I had no idea until afterwards that with faecal peritonitis you can die up to three weeks postsurgery. My daughters say I should write down every day ‘I’m alive, I’m alive, I’m alive,’ but some days I don’t feel so lucky,” says Margaret. Whilst grateful to have survived, everyone has their down days and she says managing permanent bladder and bowel conditions comes with its challenges.

Margaret describes herself as a ‘frequent flyer’ to her local hospital. “I’ve had six major abdominal surgeries, my stoma repaired multiple times due to prolapse and obstruction and now I have adhesions (fibrous tissue that can form between organs) and persistent pelvic pain,” she says. “However, my colorectal surgeon doesn’t want to do any more surgeries as he is concerned about the risk of perforation to my small intestine.”

Naturally, Margaret’s personal experience with incontinence made her more empathetic with patients in her job as a nurse continence specialist. “Listening, asking them to describe in their own words what they were experiencing and how they felt about it and I’d be hard put ending the appointment in under two hours,” she says.

“I’ve had a good life. I really have and I’ve thoroughly enjoyed being a nurse,” says Margaret. She is thankful to be able to support others in need and although retired now at 70, she works as a community volunteer once a week. “My greatest joy is to sit and have a cup of tea with someone and have a nice chat. I like to listen to people’s stories and hold that space for them. You can’t take away their pain, but you can listen to and validate their experiences. We can learn from everyone’s life stories and for me as a nurse it’s been an honour and an education.”

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What is urodynamics?

Urodynamics or urodynamic testing, is a special bladder test that assesses how well the bladder fills and empties and how well the urethra is functioning. It generally involves having a catheter inserted into the bladder to monitor the pressure inside the bladder and a tube in the rectum to monitor pressure outside the bladder. These two pressure measurements help to work out what the bladder is doing as it fills with water and as the water is passed out.

What is bowel perforation?

Bowel perforation is a hole in the lining or wall of the gastrointestinal tract. It is a potentially life-threatening complication of several diseases. Common causes of perforation may include trauma, instrumentation, inflammation, infection, malignancy, ischaemia and obstruction. WHAT IS NEUROGENIC BOWEL AND BLADDER? A neurogenic bowel or bladder can be the result of an injury to the spinal cord or nerve pathways to the bladder and/or bowel which can disturb communication between the brain and the nerves that control bladder and bowel function. This often results in the bladder not contracting and emptying properly, and poor awareness of the need to go to the toilet for your bladder and/ or bowel resulting in incontinence.

What is selfcatheterisation?

Self-catheterisation (or intermittent selfcatheterisation) is when you pass a catheter (or tube) into your bladder via your urethra to empty your bladder and remove it afterwards. This may need to be repeated several times per day depending on what your bladder function is like or how well it empties and as guided by your relevant healthcare professional.