Living with a urinary catheter

Finding information

Almost all the people we talked to had wanted information after having a catheter fitted, though how much varied. Most had known nothing or very little about catheters before their own experience. At one time or another they had wanted to know more about:
  • How catheters work and stay in place
  • How to keep the area around the catheter clean  
  • Which catheters and bags might suit them best
  • Different types of catheter valves
  • How to fix the catheter bag to the leg or to the stand
  • How often to change the catheter
  • How to prevent or get rid of an infection
  • What drinks were best
  • How to unblock a catheter
  • How to prevent leaking
  • How to manage pain caused by bladder spasms
  • How often to have a check-up with a urologist and an ultrasound scan
  • Having a sexual relationship with a catheter in place
People varied widely in how much they wanted to know and when. Several said that they hadn’t been told much, particularly at the time of their accident or when they had first needed the catheter. Stuart, for example, who broke his neck in 1997, aged 47, had lacked information. He was given a suprapubic catheter and spent almost a year in hospital.
Stuart had to pick up information ‘ad hoc’ after he left hospital. He said, for example, that no one told him that catheters come in different sizes and that various types of valves exist for leg bags. Stuart also said that no one mentioned sex. Several other people said they’d also had to ask lots of questions to get information when first fitted with a catheter but information was not volunteered.
Some people said that they had been given conflicting information. John Y, for example, said that he’d got conflicting information about whether or not it was a good idea to drink cranberry juice to prevent infections. Jack was originally told that his catheter should be changed every 12 weeks, but recently a nurse told him that it needed changing every four weeks. Roger also mentioned getting conflicting information.
Others had much better experiences. Gavin, for example, got information from health professionals and others in a similar situation, and said the advice had been ‘pretty consistent’. Alex said that she’d been given good information from her continence advisor and from her consultant. Ian had got excellent information in the hospital’s spinal unit and later from district nurses.
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When people struggled to get enough information from some of the professionals involved in their care, they either approached others with a similar condition and asked their advice, or they searched the internet for what they needed. However, Iain warned that the internet gives bad information as well as good. Other people went back to the specialist units where they had stayed as an inpatient for long periods. A few also looked at leaflets provided by the hospital, or looked at relevant books. Some people also sought advice from family members, carers, charitable organisations or their pharmacist.
Several women with Fowler’s Syndrome had found most of their information through a group on Facebook.
Some people don’t like using the internet or prefer leaving decisions about their medical care to their doctors. Ann had not searched for information about catheters on the internet and had, on the whole, had enough information. She would have liked to have been told that the drainage bag can slip out of the stand by the bed at night. This happened one day and she woke in a flood of urine. Apart from that, she was satisfied with how much information she had been given. Indeed, she said that too much information at first might have overwhelmed her. Later, her daughter-in-law, a nurse, advised her to use a sleeve to hold her leg bag in place.

More information about indwelling catheters can be found in the Bladder & Bowel Foundation booklet. 

Last reviewed June 2015.

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