As the spina bifida population ages, there will be many people who have never had their continence issues addressed. This leaflet is intended to help this group to look at their bowel and bladder management.

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Continence Issues For Adults With
Spina Bifida
As the spina bifida population ages, there will be many people
who have never had their continence issues addressed. This
leaflet is intended to help this group to look at their bowel
and bladder management.
Bowel • Establish a bowel routine. Start
a new regime on an empty bowel.
Most people with spina bifida will Get your GP to check for high up
have bowel problems. These may blockages. You may need to have
include constipation, diarrhoea, and a good “clear-out” before you start
faecal overflow or be a combination a new way of doing things. Regular
of all three. You need to know what emptying of the bowels should
your faeces should look like – you be encouraged. The best time is
need to aim for it to be firm but not after breakfast or other meal times
hard, well formed but not knobbly. when natural bowel movement is
most active.
If you have never been given
appropriate advice about bowel • Eat a well-balanced healthy diet
management you will probably with plenty of fluid and fibre to help
be wearing pads with all the keep your motions soft and easy
accompanying difficulties (leakage, to pass. If you are unsure what
odour control, sore skin etc). constitutes a “healthy diet” speak
to a dietician.
You may like to try a different way
of dealing with your bowels: • It is important to exercise daily to
the best of your ability as it helps to

2. Continence Issues For Adults With
Spina Bifida
keep your bowels moving. If you are • If you cannot manage to regulate
unsure what exercises you are able your bowels, and still have episodes
to do, ask your physiotherapist, or of soiling, enemas may be the next
talk to someone at your local gym. step. Again, there are various types
of enemas available depending on
• Sometimes you will need to use your needs.
a combination of diet and regular
medication - do not worry about • Some people use a system to
your bowel becoming “lazy”. If you completely clear the bowels out
need to take medicine then you every 2-3 days. This is called a high
need to take it. The medication bowel washout. A tube is inserted
prescribed will depend on what your into your bottom (anus) and fluid
bowel problem is. Medicines are is washed around the bowel. The
used to soften your stool, to help tube is removed and the fluid and
your motions pass easily, to clear any faecal matter will exit the bowel.
the bowel out, to stop diarrhoea
and to make your stools more bulky. • When all these methods have
been tried without success,
• You may have always used surgery may be the only option.
manual evacuation (using your Discuss this with your GP and ask
fingers to remove faeces from the him to refer you to a specialist. (See
lower bowel): although this is not Shine’s leaflets ‘ ACE Procedure’
a method that is widely taught, if it and ‘Colostomy’)
works for you there is no reason to
change. Keeping yourself constipated may
seem like an easy option, but used
• Gently stroking your anus over a long period can result in
(bottom opening) with your finger complications, including a condition
can sometimes produce a bowel called mega colon. It can also
movement. cause faecal overflow; you need to
be aware of the difference between
• Coughing or blowing your nose diarrhoea and faecal overflow –
or laughing whilst sitting on the many people think that they have
toilet may also produce a bowel diarrhoea when in fact it is overflow.
movement. If this leads to incorrect treatment

3. ie giving anti diarrhoea medication, • Referral to a urologist with an
your bowel management will interest in the neuropathic bladder
worsen. Also be aware that faecal (a bladder whose nerve supply may
overflow can be misdiagnosed as be interrupted eg as in spina bifida).
Irritable Bowel Syndrome and will
need investigating. • Access to a continence adviser
with knowledge of the neuropathic
It is never too late to change! bladder.
Bladder • An explanation of how good
bladder management will protect
You may not be able to achieve your kidneys.
bladder continence until you have
achieved bowel continence. • Regular (preferably yearly)
urodynamics to check bladder
Hopefully you may have been seen and kidney function (see Shine’s
by a urologist at some point in your leaflet “Tests and Procedures Used
life and will therefore understand To Check Function of the Urinary
the importance of achieving System”).
urinary continence. The priority
when managing your bladder is to • Ability to recognise urinary tract
preserve kidney function. If regular infections and know how to deal
assessments are not carried out, with them.
irreversible kidney damage may
result. A bladder which does not There are several ways of managing
work normally might: urinary incontinence. Adults do not
need to be sitting in wet pads.
• cause urine to flow back to the
kidneys; Talk to your urologist about:
• not empty completely. This could • CIC or ISC (Clean Intermittent
lead to urinary tract infections. Catheterisation or Intermittent
Self Catheterisation – see Shine’s
Good bladder management should leaflet on catheterisation).
include:

4. • Medication to “calm” the bladder Remember to drink at least one cup
(where appropriate). of fluid each hour during the day.
Avoid “brown” drinks (tea, coffee,
• Urinary sheaths (for men only) – a cola etc), anything with caffeine,
device similar to a condom with a fizzy drinks. Clear fluids are best
hole in the end which is attached to – there is nothing wrong with tap
a bag. water!
• Long term catheters into your To help avoid urinary tract infections
bladder via the urethra (tube that drink a glass of cranberry juice each
urine comes out of) or through a day, 2 glasses a day if you have a
small incision in the abdomen (belly) current urinary infection. Cranberry
called a supra-pubic catheter. Both tablets and capsules are available,
types of catheter will need frequent but are less effective than the juice.
changing either by the district nurse NB Do not drink cranberry juice or
or at the hospital. take tablets/ capsules if you are
taking a blood thinning drug such
• Various surgical options, some of as warfarin or aspirin.
which are not suitable for everyone.
Ask your GP to refer you to a urologist Taking control of bladder and bowel
to discuss your options. (It may be continence is a big step towards
helpful for you to read Shine’s leaflets achieving the independence that
on Mitrofanoff and Urostomy). you hope for, expect and deserve.
Help us
Shine relies on people’s generosity and support so we can help our clients
who depend on us for help and advice - people with hydrocephalus, spina
bifida, their families and carers. To donate to Shine please visit
www.shinecharity.org.uk or call 01733 421329.
This information has been produced by Shine’s medical advisers and
approved by Shine’s Medical Advisory Committee of senior medical
professionals.
Shine - Registered charity no.249338
To see our full range of information sheets and to find out how to donate to
Shine please visit www.shinecharity.org.uk