Living with a urinary catheter

Feelings about having an indwelling catheter

Some people had been partially paralysed because of a spinal cord injury. Immediately after the accident a catheter had been put in to drain the bladder. Many were at first unaware that this had happened because they lacked feeling below the waist, but later realised that a catheter was unavoidable. Dave found that suddenly being told he was going to have a permanent catheter was ‘slightly disconcerting’ but he knew it was necessary. He could not self catheterise so understood that a suprapubic catheter was the best way to manage his incontinence. Others with spinal cord injury, such as Michelle, also talked about their reactions to having a catheter.
Others were given a catheter because of another condition, such as multiple sclerosis, and some spoke very positively about having a catheter. They recognised that a catheter solved problems of retention or incontinence. Emlyn, for example, went into hospital when his enlarged prostate blocked his urine flow. He had been ‘doubling up with pain’ and felt great relief from the catheter. Rob, who had cauda equina syndrome (a serious neurological condition), liked the catheter because it solved his problem of incontinence. It allowed him a fairly normal life. His wife Pat said that the catheter was a ‘small price to pay’. She was just glad that her husband was alive.
Many people’s feelings about having a catheter changed over time, they gradually got used to having one. Frances, for example, who had multiple sclerosis, was horrified when she realised at the age of 40 that she would spend the rest of her life with a suprapubic catheter and a drainage bag. But she soon felt that the catheter had improved her life. It made going out and travelling much easier. Alex said the catheter had ‘liberated’ her – she could go out for the day without worrying about needing the toilet and could also take long-haul flights.
Gordon needed a urethral catheter because his enlarged prostate obstructed urine flow. He didn’t like the idea of having a catheter but soon accepted it. Gavin, who had a suprapubic catheter, soon stopped noticing the tube in his abdomen and Alok said he soon accepted that having a catheter ‘was just another way of passing urine.’
Some people only accepted a catheter after changing from one type of catheter to another, such as urethral to suprapubic or vice versa.
Some people at first felt very negative about having a catheter, and described how they gradually changed their attitudes. Ann, for example, whose bladder problems followed radiotherapy after a hysterectomy for uterine cancer, said that when her doctors told her that she would need a catheter she felt that they were condemning her to death. However, four months later she was glad to have had the surgery. Peter also had very negative feelings about his urethral catheter at first, particularly when it wasn’t ‘working well’.
Hayley felt that there was stigma attached to having a catheter. She explained that people are brought up to regard anything to do with going to the toilet as a taboo subject. But now she accepts having a catheter and said that in some ways it has made life easier and is empowering.
Some people such as Carol felt ambivalent about the catheter. She had a urethral catheter for a few months because of endometriosis.
Other people said that having a catheter affected their self image. Vicky, for example, felt that she couldn’t have an intimate relationship because of her catheter.
Kenneth had a urethral catheter for eight years because he became incontinent after surgery for prostate cancer. He never got used to having that type of catheter. He now has a condom catheter (a Conveen®). Looking back, he said that he hated having the urethral catheter and that it was a ‘blooming nuisance’.
Jack, who’d had a catheter since 2011, felt unsure about it. He had an enlarged prostate and didn’t know whether to carry on living with the catheter or have surgery to his prostate. Surgery would mean he could be catheter free but came with its own risks.
Several other people we interviewed said they felt embarrassed about having leaks, and sometimes people were concerned about other people’s reactions to their catheter and leg bag. Carol, for example, said that she sometimes worried that the urine in the bag might smell. Badg, who was in a wheelchair, thought it unlikely that other people would notice a bulge on his leg because of the height of the wheelchair. He said that able bodied people have ‘enough trouble looking down as far as your head if you are in a wheelchair, and they won’t have a clue’. However, Sara, who was also in a wheelchair, said that others did sometimes ask about the lump on her leg that appeared to be growing, but when she explained what it was they felt embarrassed and didn’t ask any more questions.
 
Most people said that they didn’t go round telling others about their catheter. They said that if others noticed the catheter or bag they didn’t usually make any adverse comments. Michelle recalled a ‘funny incident’ when a friend had emptied her bag for her in front of her children. Curious, her friend’s young children discretely pulled up Michelle’s trouser leg to find out where the liquid was coming from. Ann said that she thinks it is probably best to talk about catheters so that other people understand the problem, and Frances thought it was important to keep a sense of humour.

Last reviewed June 2015.

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