Managing bowel problems

The first step to managing bowel problems is to talk to a specialist. Try not to worry about talking to your doctor or a nurse about this. Health care professionals are used to talking about these issues and can help.

Who can help with MS bowel issues?

Health care professionals who can help with bowel issues are:

your GP. They can be the first step in getting help. They won’t be a bowel expert, but they can refer you to a specialist bladder and bowel service.
your MS nurse. They can give you information, advice and support. They can also refer you to a local bladder and bowel service.
your local bladder and bowel service
your District (or Community) Nurse. These nurses tend to work away from hospitals, often linked to GPs. They visit clinics, care homes or where you live. They can provide care like help with using equipment (such as for anal irrigation) or having a mini-enema if you can’t do this yourself

As well as these, you might also get help from your neurologist or a gastro-enterologist. That’s a hospital-based specialist whose work includes MS-related bowel problems. They work with bladder and bowel nurses and offer treatments and advice. Your GP or neurologist can refer you to a gastroenterologist.

Family and carers might also help with your bowels. Partners and family carers who need to help you take care of your bowels can be taught what they need to know by health care staff.

Some people have paid carers, often a Personal Assistant (PA) that they hire with their benefit payments. If you hire a PA, check they’ve had training to help with bowel issues. If your PA doesn’t have these skills, it’s your responsibility – as the person who hires them - to make sure they get them. Or find a PA with the right training.

Bladder and bowel services

Bladder and bowel services are sometimes called continence services. They’re based in a hospital, clinic or health centre. Your GP, MS nurse or neurologist can give you a referral. You can often contact them yourself.

In these services specialist nurses (or 'advisers') can assess your problem and carry out tests. They can give you information, support and treatments. They can get you any equipment and products you need.

The Bladder and Bowel Community can give you details of your nearest service. You can also speak to a specialist nurse. Calls are confidential.

Your first appointment

Before you see a bladder and bowel service or a bowel specialist, they might want you to keep a diary for a week. In it you record your symptoms, how often you poo (or try to), what the poo’s like, and what you eat and how much you drink.

At your appointment these are the kind of things they might ask:

describe your bowel symptoms and when they started
can you still feel when it’s time to poo?
how often do you poo?
what does your poo looks like?
do you strain when you poo?
describe the food you eat and how much fluid you drink
what's your medical history and what medication do you take (including laxatives)?
how physically active are you?
what support do you have at home?
how easy it is for you to move around (and get to a toilet in time)?
do your bowels affect your work or sex life?
do you need to use your fingers to help you poo?
do you also have problems with your bladder?

Describing your poo and your visits to the toilet

When you talk to doctors and nurses, the more detail you give, the better. This makes it easier for them to help you. Tell them:

if you find it hard to poo
how often and how urgently you feel the need to poo
how easy or not is it for you to wait before you poo
how often you spend on your bowel and toilet issues
if you leak poo
if your belly is swollen
how your bowel affects your fatigue and ability to move about

When doctors and nurses talk about poo, they use the Bristol Stool Chart. This chart can help you tell staff what yours are like.

See the Bristol Stool Chart at the Bladder and Bowel Organisation website

Examination

With your permission, the doctor or nurse might look at your bottom and belly. They might put a gloved, lubricated finger inside your bottom to check how well your sphincter and pelvic floor muscles work. You might need tests and scans to check how your insides are working.

You’ll also get help and advice with:

looking after your skin
products and treatments that might help, like pads or transanal irrigation systems
dealing with laundry and the problem of things smelling of poo

You’ll get a treatment plan. You or your partner/family carer will be taught anything you or they need to do as part of your treatment.

Getting into a regular toilet routine

The first step in managing a bowel problem caused by MS is to get into a toilet routine. This means:

schedule a regular time to go to the toilet, even if you don’t feel the need to go
your body’s urge to poo is often strongest within half an hour of waking up. So sit on the toilet for about half an hour around 20 to 30 minutes after breakfast
that's a good reason not to skip breakfast
or schedule a regular time after coffee or half an hour after a hot meal
make sure your toilet is fitted out so you can feel comfortable and stable
it’s most natural for us to squat when we poo. So you may find it helps to have something to rest your feet on, so your knees are above hip level
take your time (and have privacy)
but try not to spend endless time in the toilet straining
if your bowels don’t open, try again at the same time next day instead of trying through the day