Let's talk continence problems

A brain injury can affect every aspect of a person’s life. The resulting symptoms can be wide-ranging, from physical effects such as balance problems and dizziness, to cognitive, emotional and behavioural effects such as memory problems and anger.

However, there is an effect of brain injury that is rarely spoken about, even though it can have a major impact on people’s everyday lives.

Continence problems, or in other words, struggling to control when you urinate or empty your bowels, are a common issue after brain injury, particularly in the first several weeks.

For many, this loss of toilet control is a sensitive issue, and people can feel as though they have lost their dignity. Guidance published by NHS England suggests that people “suffer in silence” because they are too embarrassed to talk about the issue.

Fortunately, with time and practice, many people regain control of their bladder and bowel functions. However, for others, continence problems can be an issue that they will need to learn to manage in the long-term.

Types of continence problems

Neurogenic bladder – bladder contraction and relaxation are uncoordinated

Functional – physical disabilities or problems with cognition and communication preventing a person from getting to the toilet on time

Frequency – the need to pass urine or faeces more often than normal

Urgency – a sudden and uncontrollable need to pass urine or faeces at unexpected times

Nocturnal enuresis – the need to go to the toilet several times during the night or wetting the bed while asleep

Stress– leaking urine or faeces during physical movement or activity, such as coughing, sneezing, laughing, lifting or passing wind

Reflex – no sensation that the bladder or bowel are full, therefore passing urine or faeces without realising it

Retention – straining or difficulty emptying the bladder or bowels (i.e. constipation)

Overflow – the bladder or bowels over-fill and leak due to loss of feeling

Faecal impaction – if somebody is constipated this can also press on the bladder, worsening any bladder problems that may be present

Living with ongoing continence problems

For most people, these problems will resolve over time with appropriate treatment and professional support.

However, if problems do persist in the longer term, there is help available. With the right advice and preparation, continence problems can be managed.

Practical products available to help manage ongoing continence problems include:

High absorbency pads and pants

Washable or disposable seat pads to protect furniture

Washable or disposable mattress protectors and bed pads

Commodes (a chair with a removable potty under the seat)

Alarms to sound at regular intervals throughout the day and night

Catheters (a fine tube inserted into the bladder to drain urine) or other urine collection devices

Anal plugs

Case Study

I’m very careful not to drink too late at night or I know I’ll be up through the night. It’s horrible to constantly feel like you need to pee when you don’t, and that was the worst part of my brain injury.

Tips for living with ongoing continence problems

Following a daily routine with regular visits to the toilet.

Plan access to toilets in advance.

Disability Rights UK sell the RADAR National Key Scheme, which can give those struggling with continence problems access to locked public toilets across the country.

Bladder and Bowel Community also offer a ‘Just Can’t Wait’ toilet card free of charge for those affected by continence problems. The debit-sized card explains that the card holder has a condition which requires urgent access to the toilet and provides a discreet and clear way to communicate with others.

Headway Brain Injury Identity Card holders can also ask for continence problems to be added to the front of their card. 

Carry a ‘survival kit’ when out and about. It may include items such as a spare set of clothing, deodorising spray, disposable pads, scented disposal bags (for soiled items), anti-bacterial wipes and hand gel.

Reduce the amount of liquid you drink before bedtime to avoid problems throughout the night.

Keep a clear pathway to the toilet at all times.

Ensure good personal hygiene to prevent skin irritation and general discomfort.

Wear clothes that are quick and easy to remove.

Wash or dispose of soiled items safely and promptly.

Talk to people, as continence problems can affect mood levels.

Remember, the Headway helpline is available to talk Monday-Friday (9am-5pm) on 0808 800 2244 or helpline@headway.org.uk.

Caring for someone with continence problems

Continence problems can be one of the most difficult aspects of caring for someone with a brain injury. It is often unpredictable and can be physically and emotionally demanding.

In addition, many brain injury survivors will find it difficult to accept that they need help, especially if the help is from someone close to them.

Tips for carers

Watch discreetly for signs that the person needs the toilet especially if they cannot communicate this clearly. These signs may include fidgeting, pacing, getting up and down, or pulling at their clothes.

Make sure to give regular reminders to visit the toilet.

Check the person has finished on the toilet and not become distracted or forgotten to use it.

More information on this topic is available in the new Headway factsheet Continence problems after brain injury, which can be downloaded below or from our Information library. 

Case study

In the early stages after my husband’s haemorrhage, he was doubly incontinent. I took him to the toilet regularly and verbalised for him when I noticed him fidgeting that he might
need the loo so he could nod a response.

As his language and mobility improved so did our success at getting to the toilet in time.

Two years down the line and there has been a huge improvement. At night if he is restless, I put the light on and ask, usually once, maybe twice a night.