Living with a urinary catheter

Reasons for needing a long-term indwelling catheter

Indwelling urinary catheters are needed by people whose bladders will not empty fully (urinary retention) or empty at inappropriate times (incontinence). Intermittent self catheterisation (ISC) is preferred as a method of draining urine from the bladder but this cannot be done by people with poor use of their hands or with loss of cerebral function because of coma or serious medical illness.

An indwelling catheter might be used long-term by someone with:

  • a condition that affects the nerves that control the bladder, such as spina bifida, multiple sclerosis (MS), stroke or spinal injury
  • a chronic debilitating or terminal illness with loss of mobility or sufficient awareness to be able to use a toilet or commode

Here, the people we interviewed talk about why they needed a long-term indwelling catheter. Most knew why they needed one, but a few were unsure. Several had other health problems to live with as well as their incontinence. 

Spinal cord injury

Some people we spoke to had had a spinal cord injury (SCI). After a SCI, the bladder and brain can no longer ‘talk’ to each other. Depending on the type of injury, the bladder becomes either ‘floppy’ (flaccid), failing to contract, or ‘hyperactive’ (spastic or reflex), when it contracts inappropriately too often. A floppy bladder loses its muscle strength and too much urine can easily overstretch it. This can damage the bladder wall and increase the risk of infection. A hyperactive bladder contracts automatically, causing incontinence. Many people who had had a spinal cord injury were paralysed and had limited use of their hands.

Ian realised that he’d been catheterised only when he came round following his accident. He became paralysed after a rugby injury. Several people had had so much to come to terms with at the time of their accident that they didn’t really think about their continence problems.

Vicky and Dave were both abroad when they had their accidents. Vicky had been skydiving in Spain and Dave had been diving in Portugal. Both spent some time in an intensive care unit and, at first, were given a urethral catheter. Roger was on a cricket tour in India when he had an accident in a 3-wheeled taxi. He wasn’t aware he’d been catheterised until later.

Michelle had an uncommon experience when she became paralysed after a routine jaw operation.

Rob was diagnosed with cauda equina syndrome, a serious condition where the nerves at the very bottom of the spinal cord become compressed. He was catheterised when he couldn’t pass urine in hospital and has had an indwelling catheter ever since.

Multiple sclerosis

Some of the people we spoke to had multiple sclerosis (MS),a neurological condition that affects more than 100 000 people in the UK (Multiple Sclerosis Society October 2018). Some of the first symptoms they’d had were urinary problems. When these got worse, the doctor recommended an indwelling catheter.

Some people with MS wore pads when their incontinence first started. Others were prescribed oxybutynin at first, then Intermittent self catheterisation (ISC), and finally an indwelling catheter. Oxybutynin is a drug which relieves urinary and bladder problems by reducing muscle spasms of the bladder.

Peter Z, who’d had MS since his 40s, collapsed at home and was taken to hospital where he had an emergency operation

Prostate problems

Prostate problems had led some of the men we interviewed to needing a long-term or permanent catheter. Derek’s bladder problems started when he needed to urinate frequently, including during the night. He was later told that he had an enlarged prostate. Like a few other people we spoke to, he’d been living with several other health problems too so was not considered fit enough to have surgery.

Gordon had an enlarged prostate soon after having a stroke at the age of 89. He’d been given a urethral catheter when he was in hospital. When it was removed, he found it hard to urinate and accepted that he needed a long-term catheter. Emlyn and Stewart both found it hard to urinate. Emlyn turned out to have prostate cancer. He was catheterised before surgery and has had a catheter ever since. Stewart had a prostate operation in 1987 but was unsure if an enlarged prostate was causing his urinary problems.

Other reasons for needing a long-term catheter

David was fitted with a long-term catheter after a major stroke, while Ann’s bladder problems started after a hysterectomy for uterine cancer. John Z became incontinent after surgery for bowel cancer.

Hayley was born with spinal muscular atrophy (SMA),a genetic disease that causes muscle weakness and a progressive loss of movement. From the age of 11, she went to the toilet only 3 times a day because of her mobility problems.

Some people needed a long-term indwelling catheter because of urinary retention (being unable to empty the bladder when you need to). Sharon’s problems started after the delivery of her daughter. She found it hard to pass urine so had a urethral catheter for 24 hours. In 2005, she found it impossible to pass urine and had a suprapubic catheter inserted, which she has had ever since. Some time before this, nurses at the hospital had tried to teach her to self catheterise but she’d found it hard to do.

After a lot of tests and investigations, some of the women we spoke to were diagnosed with Fowler’s Syndrome, the commonest cause of urinary retention in young women. Urinary retention in young women is not common but can be quite debilitating. It is caused by the sphincter’s failure to relax and allow urine to be passed normally. The urethral sphincter is the muscle that closes the urethra and keeps people continent. No neurological disorder is associated with Fowler’s Syndrome: up to half the women also have polycystic ovaries.

Sometimes people are unsure exactly why they have urinary retention. Faye had urinary retention after being very sick. She’s had no diagnosis but now lives with a suprapubic catheter.

Carol was diagnosed with endometriosis, which invaded her bladder and bowel. She had a urethral catheter for a few months to allow her bladder to try and heal after it burst. Unfortunately, her bladder didn’t heal because its wall was very thin after many operations. She lives with the risk of her bladder rupturing if it gets too full.

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Last reviewed October 2018.
Last updated October 2018.


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