Living with a urinary catheter

Going out locally

A long-term catheter is generally used because of a serious illness or disability. These conditions may make it hard to leave the house, but the catheter itself should not be a reason to be house bound. Indeed, having a catheter may make it easier for some people to go out. Pat, a carer we talked to, said that a catheter had helped her and her husband’s social life by solving his problem of incontinence. She and her husband could now go to the garden centre or the theatre, things they could not have done before. A catheter may also remove the pressure to find a public toilet at very frequent intervals.
The catheter had given some people the freedom to go to places where the toilets were far away. Frances, for example, said that she could attend outdoor concerts where toilets were few. She could discreetly empty her leg bag wherever she was sitting. Iain, on the other hand, liked to be close to a toilet in spite of having a catheter and a drainage bag. Having a catheter hadn’t stopped him doing anything he’d done before his illness.
Some people with a spinal cord injury worried that, while they were out, their catheter bag would fill up and cause problems, such as autonomic dysreflexia. This is a potentially life threatening condition that occurs when the blood pressure in a person with a spinal cord injury above T5-6 becomes excessively high. Vicky felt that, at times, her catheter and leg bag ‘ruled’ her life. If she knew she was going out, she stopped drinking an hour before leaving home, making sure she left with her leg bag empty. A few other people also drank less before going anywhere unfamiliar. Some, however, did not worry about this and described going to work, on holidays and taking part in social life, including sports. Some drove their own car while others went with a family member or professional carer.
Some people said that, if they knew they were going to be away from a toilet for more than two hours, they would make sure they were wearing a leg bag. Ian used a large night bag all the time so he did not have to worry about emptying it while he was out. Others recommended using a larger leg bag when going out, even if they used a smaller one ordinarily. Annie sometimes solved the problem of a full leg bag by emptying it onto the grass or down a drain. Badg sometimes emptied his bag in a dark corner of a car park if he couldn’t find a suitable toilet. Gavin, who has a suprapubic catheter, found it useful to go out with a spare length of tubing so that he could use any toilet.
Badg always planned his car journeys carefully. He carried a spare catheter and bags. He also took an empty bottle in the car in case his leg bag needed emptying. Alok also said that it is important to carry spare bags, especially if the user doesn’t have a bag with a tap at the bottom that can be opened.
Ann has a busy social life. She attends church and sings in a choir. She also belongs to a book club and walks her dog. Ann sometimes worried that other people would notice her leg bag. She tried different ways of securing it to her leg. She has gradually become more confident about going out and does not restrict how much she drinks.
Badg, who has a spinal injury, thought that able bodied people were unlikely to notice that someone in a wheelchair had a catheter bag. A few other catheter users, though, felt conscious of it and restricted in what they could wear.
Stuart broke his neck in 1997 when he was 47. He worked with an organisation that designed a leg bag emptying device powered by his wheelchair. This gave him more freedom in his everyday life (see ‘Drainage bags’). Others told us how their wheelchair or mobility scooter also made it possible for them to get out and about. However, Peter, who had multiple sclerosis, preferred to stay at home most of the time, as did Gordon, who was 96. Gordon’s daughter lived nearby and did his shopping.
Although some people had carried on with their usual social activities, Kenneth told us that the urethral catheter made some activities difficult. Sharon also found that her suprapubic catheter sometimes affected her activities because it caused pain. Her catheter and bladder problems, which followed a difficult forceps delivery, forced her to give up work.
Most places open to the public have toilets for people with disabilities, but some are too small for a large wheelchair.
People who practise intermittent self catheterisation or those who have bladder problems but don’t use a catheter may need to find a toilet quickly. The Bladder and Bowel Community have designed a card called ‘Just Can’t Wait’, which people can carry. The card clearly states that the holder of the card has a medical condition and needs to use the toilet quickly. It does not guarantee access to the toilet but most places that people visit are willing to help. To obtain this card see: Bladder and Bowel Community.
Practical tips when going out locally included:
  • find out where the toilets are when going somewhere new (and if they can take a wheelchair)
  • use a bigger leg bag when going out, if necessary, because it can hold more urine
  • take spare catheter supplies with you just in case

Some people we interviewed travelled long distance, even taking long haul flights to holiday destinations (see Travelling long distance’). 

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Last reviewed October 2018.


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