Advice and resources : Constipation in people with a learning disability

Constipation is when you are not pooing or are finding it hard to poo. It’s a common problem that affects people of all ages.

People with a learning disability are at higher risk of constipation than others, and communication problems can mean it is difficult for the people who support them to spot it and get treatment. Untreated constipation can lead to life-threatening complications, so it’s important to be aware of the signs and symptoms, and how to prevent and treat it.

Time to contact their GP surgery

If you’ve spotted one or more of the signs of constipation, you should contact the GP surgery to arrange an appointment. When you call the GP surgery, make sure the receptionist knows you are calling about constipation experienced by a person with a learning disability.

What causes constipation?

People with a learning disability can get constipated for the same reasons as anyone else, such as:

• poor diet (including not eating enough) and not drinking enough fluids
• lack of movement and exercise (not being active can slow down your digestion)
• side effects of medications (including some antipsychotics, antidepressants, and anticonvulsants)
• feeling anxious or depressed (mental health issues can affect your digestion)

These issues are more common in people with a learning disability, so they are at greater risk of getting constipated.

Some conditions linked to learning disabilities, such as Down’s syndrome or cerebral palsy, also put a person at higher risk of constipation, as well as common conditions like hypothyroidism, depression, and diabetes.

There is also some evidence that body shape changes and abnormal muscle tone can also increase the risk of constipation.

Environmental factors that can increase the likelihood of constipation include:

• not having the right toileting facilities or enough privacy
• changes in daily routine or care
• ignoring the urge to go to the toilet

Impact of constipation

Constipation might not seem like a big deal, and it's usually easy to treat if you catch it early, but if left untreated, it can lead to more serious problems.

Straining to pass bowel motions can cause rectal bleeding, which might be due to small tears in the anus (anal fissures), swollen veins in the rectum (haemorrhoids), or the rectum slipping out of place (rectal prolapse).

Symptoms of a serious problem caused by constipation can include:

• abdominal pain
• cramps
• bloating
• loss of appetite
• nausea
• overflow diarrhoea (when loose poo leaks around a blockage)
• faecal impaction (a hard mass of poo stuck in the rectum)
• faecal vomiting (vomiting due to a severe blockage)
• twisting of the bowel, which can lead to a lack of blood flow (ischaemia) and a severe infection (septicaemia)

In extreme cases, long-term constipation can be fatal.

Symptoms of constipation can be missed, sometimes due to a person’s behaviour being wrongly attributed to the person’s learning disability. Research shows a link between chronic constipation and behavioural problems, including self-harm, in people with a learning disability. This isn't surprising given how serious some of the symptoms can be, so It's important to consider physical problems like constipation if someone suddenly starts behaviour in unusual ways or acting differently.

Chronic constipation can seriously affect your quality of life. Besides the physical symptoms, there are also psychological impacts, like embarrassment, social isolation, and anxiety. Long-term constipation is also linked to urinary and faecal incontinence, which can increase social anxiety.

Tips to avoid constipation

We encourage a personalised approach that considers every part of the person’s physical and mental health.

While laxatives can help manage constipation, other methods should be considered first, as laxatives can cause diarrhoea and dehydration, which can lead to heart problems, kidney damage, and muscle issues. Long-term use of laxatives can also cause dependency and rebound effects that causes the constipation to worsen.

Carers may often feel helpless when the person they care for has chronic constipation, but there are practical steps you can take. It might take some time, but you can help a person with a learning disability improve their bowel habits and reduce or even remove the need for laxatives.

Diet and exercise

Constipation is mainly caused by a lack of fibre, dehydration, and inactivity, so lifestyle changes around food, drink, and movement are often needed.

Fluid intake:

A constipated person needs 50-60ml of fluid per day for every kilogram they weigh, and people who breathe through their mouth, sweat a lot, or drool may need more. Foods like soups and yoghurts can also add to fluid intake. When not constipated, adults should drink six to eight glasses of fluid a day.

Diet:

People with a learning disability in supported communities often have poor diets with not enough fruit and vegetables. Simple dietary changes can increase fibre intake, but it's recommended to do this gradually to avoid bloating and gas. A balanced diet should include whole grains, fruits, vegetables, and pulses. Adults should aim for 18-30g of fibre per day.

Exercise:

Lack of exercise slows down the natural movement of poo in the bowel, leading to constipation, and adults with learning disabilities often have low activity levels compared to the general population. Consider what physical activity the person can do to help their abdominal muscles work.

Toileting

To encourage effective bowel movements, it's important that a person is comfortable when using the toilet. Factors to consider include:

• a well-ventilated, warm, and clean bathroom
• enough space
• adequate privacy
• lack of distractions
• feeling well-balanced on the toilet seat

Research has shown the most effective sitting position for pooing is with your knees higher than your hips, leaning forwards with elbows on your knees, pushing out your abdomen, and straightening your spine.

Physiotherapists or occupational therapists can help provide appropriate toilet seating to encourage the best posture. A footstool can help them position their feet for balance and push with their stomach muscles.

Bowel habit retraining can be helpful for some people. They should be supported to sit on the toilet first thing in the morning after a warm drink or about 30 minutes after eating a meal. This should be done every day at the same time. Try to link the toileting plan with the usual time the person opens their bowels. Encourage them to sit on the toilet for 10 minutes and reward them if they open their bowels during this time.

It's important that an individual can respond immediately to the sensation of needing to open their bowels, so people with mobility problems should have help to get to the toilet when they need it.

Physical health and medication review

It's important to check for health conditions that can cause constipation, like depression and thyroid deficiency. These are usually treatable but can come on slowly and unnoticed.

People with a learning disability are more likely to take medications that cause constipation. They should be on the least amount of medication needed to manage their condition. Therefore, a medication review is essential in managing constipation. Any constipating medication should be adjusted, if possible.

Monitoring

Ongoing evaluation is essential to gauge if interventions are successful. A baseline measurement should be taken, and an objective measure like a poo chart should be used daily to monitor the effectiveness of the bowel programme.

It's important to identify what is working and what isn't. For example, increasing fibre intake can sometimes result in bloating but no improvement in bowel movements. An effective management strategy will result in softer poos being passed more frequently and with less effort. Waist measurements may be needed to monitor bloating where there are real concerns.

Monitoring is only useful if appropriate action is taken in response. There should be clear guidance on what action to take if concerns are identified.

Laxatives

Laxatives may be prescribed if lifestyle changes aren't enough to manage constipation, or while waiting for them to take effect. Long-term use of laxatives isn't generally recommended. Some laxatives can be habit-forming, meaning the bowel may start to depend on them, making the problem worse.

There is also some evidence that long-term use of stimulant laxatives can have carcinogenic (cancer-causing) effects. Guidance for laxative use in people with a learning disability is the same as for the general population and the instructions should be followed carefully.

Laxatives can become less effective over time. For many people with a learning disability, this leads to an additional type of laxative being prescribed. Ideally, the preferred treatment would be the lowest effective dose of one medication.

There is some evidence that people with a learning disability can be over-reliant on laxatives. If long-term use of laxatives is needed, other non-pharmacological approaches should always be considered. Sessions using muscular training, abdominal massage, and diaphragmatic breathing combined with laxatives have been shown to be more effective for chronic constipation than laxatives alone.

Resources

NHS England

Download the following PDF leaflets from the NHS England website:

• Are you worried about your poo? (Easy read leaflet)
• Trouble pooing (constipation) – tips for healthy pooing (Easy read leaflet)
• Let’s talk about constipation (Leaflet for carers)
• Poo matters (Information for families and carers)