Everyone's bowel movements are different.

People often think constipation is about opening your bowels less often. It is more than that. You may be constipated if you:

• pass hard or lumpy stools

• need to strain

• feel like your bowels haven't emptied completely

• find it difficult to pass a bowel movement

• open your bowels less often than is normal for you.

Even if you open your bowels every day, you may still be constipated if your bowel movements are difficult or uncomfortable to pass.

Paying attention to changes in your bowel routine can help you recognise constipation early.

Many people living with MND experience changes to their bowel habits.

MND can affect the nerves that control bowel movement, making it slower or harder for the bowel to work.

Constipation can happen at any stage of MND. It is usually caused by several changes rather than one single problem, including:

• moving around less

• weaker muscles that help empty your bowels

• eating or drinking less than usual

• changes to types of foods you are eating

• medicines that can slow bowel movements

• other health conditions

• changes to food (nutrition) when using a feeding tube.

Having a new feeding tube may cause a change to bowel movements in the short-term. However, a feeding tube can also support taking in more fluid and/or fibre to help manage constipation. Monitor changes and discuss with your dietitian and healthcare team.

Constipation can affect your comfort, your energy and your quality of life.

You might notice:

• bloating or stomach pain

• feeling that you want to vomit (nausea)

• you don’t want to eat and drink as much as you used to (reduced appetite)

• feeling full quickly

• feeling tired

These changes, particularly wanting to eat and drink less and feeling full quickly can affect how much you eat and drink. This may lead to weight loss.

Constipation can also affect how you feel emotionally. Some people:

• avoid going out because they worry about using the toilet

• feel embarrassed talking about bowel problems

• become anxious or frustrated

• need more support from family or carers.

If constipation is affecting your daily life, tell your healthcare team. They can help.

Establish a regular toilet routine

Going to the toilet at regular times can help train your bowels to empty more easily.

What you can do:

• Try to use the toilet at the same time each day

• Don’t ignore the feeling to open your bowels

• Allow enough time so you don’t feel stressed or rushed.

“Allowing time to sit on the toilet and not feeling rushed can help reduce stress. Being more aware of how much you’re drinking to make sure you take in enough water regularly is also helpful.” Carer of person living with MND

Drinking enough fluid

Drinking enough fluid helps keep stools soft and easier to pass. Not drinking enough can make constipation worse.

What you can do:

• Sip water regularly throughout the day.

• Drink the amount recommended by your healthcare team.

• If swallowing has become difficult, ask your speech pathologist or dietitian about drinks or thickened fluids that are easier to swallow.

Eat the right amount of fibre

Fibre helps stools move through the bowel, but the amount that is right for you depends on how much you eat and drink. Too much fibre without enough fluid can make constipation worse.

What you can do:

• Eat the amount and type of fibre recommended by your healthcare team.

• Include high-fibre foods, such as wholegrains, fruits, vegetables, and beans - if they are suitable for you.

• Talk with your dietitian about making changes to your diet and before taking fibre supplements.

“Using stool softeners and fibre supplements as required, and increasing fruit and vegetable intake as part of a pureed food diet can definitely help.” Carer of a person living with MND

Keep moving where possible

Movement helps keep your bowels active. Even gentle movement can help reduce constipation.

What you can do:

• include gentle movement or exercise into your daily activities.

• change your position often if you spend a lot of time sitting or lying down

• ask your physiotherapist or healthcare team what activities are suitable.

Review your medicines

Some medicines can slow your bowels and contribute to constipation.

What you can do:

• ask your pharmacist or doctor whether any of your medicines could be causing constipation.

• tell your healthcare team if your bowel habits change after starting a new medicine.

• don't stop taking prescribed medicines without speaking to your doctor or healthcare team first.

Some medicines and treatments may cause changes to your bowel patterns, including a shift from constipation to loose, watery stools or diarrhoea. Speak to your healthcare team for more information.

Speak with your healthcare team if:

• you feel worried about your bowel habits

• your bowel habits have changed

• you haven't opened your bowels for several days and this isn't normal for you

• constipation keeps coming back

• constipation is affecting your eating, comfort or daily activities

• you feel increasingly bloated or uncomfortable.

Seek urgent medical attention if you have:

• three or more days without a bowel movement

• severe stomach pain

• vomiting

• blood in your stool

• a swollen or hard stomach

• dizziness, or feeling light-headed or unwell as this could be a sign of dehydration.

You don't have to manage constipation on your own.

Your pharmacist can often be the first person to speak with. They can recommend suitable over-the-counter treatments, check whether your medicines may be contributing to constipation and advise when you should see your doctor.

Your healthcare team can help you find an approach that works for you.

Support may come from your:

• pharmacist

• GP

• dietitian

• speech pathologist

• physiotherapist

• nurse

• MND clinic

• MND Advisor

“As a carer, understanding what was going on and why, and how I could help my loved one made me feel better.” Former carer

If you think you are constipated, don't ignore it or hope it will go away on its own.

The right treatment depends on what is causing the constipation and how bad it is.

Your healthcare team may suggest:

• changes to what you eat and drink

• reviewing your medicines

• bowel medicine that you take by mouth (laxatives)

• medicine placed into the bottom/rectum (suppositories or enemas) to help empty the bowel, if constipation is very bad.

• Treating constipation is different from preventing it.

Once constipation has improved, your healthcare team may recommend an ongoing bowel management plan to help prevent it returning.

“The relief of a bowel movement after being constipated for a length of time is understated. The bloating, a "too full" feeling and the discomfort disappear. Unfortunately, the cycle can begin again.” A person living with MND

You may find these questions helpful at your next appointment.

• Could my medicines be making me constipated?

• What can I do to help prevent constipation?

• Am I drinking enough fluid?

• Is what I’m eating (my diet) right for me?

• Should I have a bowel management plan?

• Which laxatives are suitable for me to treat or prevent constipation?

• What should I do if constipation keeps coming back?

• When should I seek urgent medical help?

• How can my carer help me?

• I find I’m in a cycle of constipation and then diarrhoea from the fibre supplements. What alternatives are there to break this cycle?

• Is a natural solution or medication better?

• If I do choose to use a laxative what timeframe are we looking at before a bowel movement happens?

You may find these infographic resources helpful:

• How to prevent constipation (Fluid, Fuel, Flow)

• Simple guide to bowel health – recognising, preventing and managing constipation

You may also find these MND Australia resources helpful:

• Maintaining weight and nutrition

• Eating, drinking and swallowing

For advice based on your needs, speak with your GP, pharmacist, dietitian and/or your state MND Association.