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Spina Bifida

Continence management

Most people with Spina Bifida have varying degrees of what is known as a neuropathic bladder and bowel - when damage to the nerves interferes with normal functioning of bladder and bowel. The priority when managing the neuropathic bladder is to preserve kidney function. If regular checks are not carried out, irreversible kidney damage may be the result. Information is available on continence management in different periods of life.

Urinary tract infections are quite common in the general population. They can be mild when they only affect the bladder (cystitis) or more serious if they affect the kidneys (pyelonephritis).

Not being able to control your urine or faeces is probably one of the most difficult problems to face. The problem arises from not having control over the emptying of the bladder or bowels - the places where urine and faeces collect before leaving the body. Many people with Spina Bifida do manage to work out a routine which helps them stay clean and dry.

Download following ASBAH Continence Topic Sheets:
Adaptations for Toileting
Antegrade Continence Enema
Artificial Sphincters
Bladder Augmentation
Colostomy, Ileostomy and Urostomy
Toilet Training and Hydrocephalus
Toilet Training and Spina Bifida
Clean Intermittent Self-Catheterisation
Dietary Advice
The Mitrofanoff Procedure

Read more on:
Continence Management
Urinary tract infections
Controlling continence

Fact sheet:
Bladder continence
Bowel continence

Continence management

Bladder: Early referral to a medical specialist for assessment of kidney and bladder function is essential. The specialist may be a paediatrician or a urologist. A bladder which does not work normally may: cause urine to flow back to the kidneys; not empty completely. This could lead to urinary tract infections. Many parents are now taught to do clean intermittent catheterisation as a precaution when their child is very young. This ensures regular bladder emptying. Vesicostomy is sometimes preferred where the child is thought to be at risk of developing kidney damage. This is usually a temporary measure.
Bowel: Most babies with spina bifida have an abnormal nerve supply to their bowel which will alter "normal" bowel function. The priority is to avoid constipation. In the early days, be aware of your child's bowel pattern. Aim to ensure regular soft stools which can be achieved by giving extra clear fluids, ie water. When mixed feeding begins, encourage foods with a high fibre content, like cereals, prunes and other puréed fruits. It is important to continue to encourage the taking of extra clear fluids.

Pre School Children
These are the important years where the aim is to work towards continence.

Bladder: Renal tract check-ups should be carried out at least once a year. Remember the importance of fluids. At least 6 - 8 drinks per day should be encouraged to help reduce the risk of urinary tract infections. Ask about the choices for effective bladder management. Cranberry juice is recognised as being useful in preventing and treating urinary tract infections, in some individuals. For these people, one glass a day is recommended. 
Bowels: Encourage a well balanced healthy diet. A high fibre diet will help to keep the motions soft and easier to pass. Avoid eating too much food which can cause constipation, like eggs and full cream milk. Introduce your child to the potty/toilet. Ensure that your child can sit safely and comfortably, supported or unsupported, with his/her feet placed on a firm surface. Regular emptying of the bowels should be encouraged. The best time is after breakfast or other meal times when natural bowel movement is most active. Maintain a high intake of clear fluids.

School Years
For the first time, working towards independent continence management becomes a prime objective. It is also a time when parents may have to involve others in the personal care of their child.

Bladder: As the bladder impairment may change, it is important to maintain monitoring of the renal tract by your paediatrician/urologist. This should take place at least once a year. For many children, the need to catheterise during the school day is essential. Any special requirements to enable this to be carried out should be discussed with the appropriate professionals, and may need to be written into the educational statement. Talk this over with professionals like the specialist urology nurse, school nurse, continence adviser, or ASBAH specialist adviser. Facilities should be available for children to carry out their continence management. These may include a larger toileting area with a sink and a lockable door to ensure privacy. The child's needs should be considered when organising residential holidays or day trips. The school should be informed of the need for extra drinks to be taken throughout the day.
Bowels: Soiling can be particularly distressing for children in school. It is essential to establish and maintain a good bowel regime to avoid this. Be careful with certain foods. For example, if beans induce a bowel movement, only eat them for this purpose. Otherwise, "accidents" may occur. Other foods may cause constipation - this can interfere with bladder function and make any urinary continence problems seem worse. Remember those extra fluids!!

Statement of Special Educational Needs
It is important to ensure that your child's continence needs are clearly defined on the Statement. The annual review enables you to highlight any changes in your child's continence needs. It is important to have frequent communication between the school and the home. A notebook can be used to inform each other of any changes or problems which may occur.

Into Adult Life
During childhood, annual checks should have been carried out as a matter of course. Puberty may bring about changes in bladder and bowel routines, incontinence may get worse and management more difficult. Queries relating to sexual activity will need to be answered and problems should be discussed with the consultant, specialist nurse or ASBAH Specialist Adviser. Automatic regular reviews often stop when individuals move from childhood to adult health services. They may only be seen if problems arise.

Surgical Options
Surgical options for long-term management of the bladder and/or bowel, to achieve continence, may be appropriate at any age. However, they should only be considered when all other choices have been explored. If renal function is deteriorating despite expert medical attention, then surgery is often required to protect the kidneys.
If surgery is indicated, the individuals and their carers should have as full an understanding as possible of the procedure and any implications for future management.
Advances in surgical techniques and on-going research means that the surgical options are changing frequently. Your consultant may mention procedures which you do not understand. Ask for an explanation and seek further information from the specialist nurse at your hospital, or an ASBAH Specialist Adviser.

Explanation of terms

  • Kidneys - organs at the back of your body which make the urine.
  • Clean Intermittent Catherisation - an established technique used to empty urine from the bladder when normal voiding is impossible. A catheter (small plastic tube) is put into the bladder through the urethra and removed when the bladder is empty. This takes only a few minutes.
  • Vesicostomy - an opening from the skin into the bladder, below the navel, to allow the bladder to drain freely into a pad or nappy. Usually just temporary.
  • Renal - anything to do with the kidneys.

Urinary tract infections

Urinary tract infections are quite common in the general population. They can be mild when they only affect the bladder (cystitis) or more serious if they affect the kidneys (pyelonephritis).
When able-bodied people have cystitis, they generally need to pass urine more often than usual and they may have to hurry to the lavatory (urgency). Passing urine hurts or scalds and leaves them feeling sore and uncomfortable afterwards. The urine looks cloudy instead of clear and may smell different from usual. Because of the discomfort and inconvenience, they soon go to their doctor for advice. They are told to drink extra fluids and take the antibiotics prescribed and they get better within a day or two. Cystitis is the commonest kind of urinary tract infection and it does not usually make the person ill. A much more serious situation arises in pyelonephritis in which the infection affects the kidneys causing a high temperature, tummy ache, backache, and sickness. Fortunately pyelonephritis rarely occurs in people who can empty their bladders normally and so have good drainage from the kidneys.
But, in people with spina bifida who cannot empty their bladders well, it is quite a different story.

Why urinary tract infections are a problem in people with spina bifida
People with spina bifida often lack feeling and control of their bladder and bowel in the same way as they may lack feeling and control of their feet and legs. This is because the nerves in the spine connecting the brain to the bladder (or bowel or legs) have been interrupted, or disconnected, by the spina bifida. The result is that they cannot usually feel when their bladder is full, nor can they empty it properly. The bladder still contains urine (the residual urine) after they have tried to empty it. The stagnant pool or residual urine left in the bladder gets smelly and easily becomes infected and sometimes develops stones (urinary calculi) as well. Infections may spread to the kidneys causing pyelonephritis and kidney damage making the person ill. This happens because the bladder does not empty out the infected urine. It may also happen in children with reflux in whom the infected urine travels up towards the kidneys.
Many people with spina bifida do not know when they have a urinary infection. Because they lack feeling they do not suffer from the scalding pain which other people feel when they get cystitis, nor do they know their bladder is not emptying properly. Treating someone with spina bifida for a urinary infection with antibiotics and extra fluids works more slowly if the bladder is not emptying. The best way to prevent urinary infections damaging the kidneys is to be sure that the bladder empties regularly and completely. One way of doing this is by clean intermittent catheterisation.

How clean intermittent catheterisation improves urinary infections
Intermittent catheterisation means inserting a narrow tube (catheter) along the usual passage (urethra) into the bladder. The urine flows out of the bladder through the catheter into the lavatory, or into a container, until the bladder is completely empty and then the catheter is removed. By doing this several times a day the person is kept much drier, or even completely dry. Provided the bladder is not allowed to remain full, urinary infections are most unlikely to spread to the kidneys.
People should catheterise at least four times a day but those who have a smaller bladder or who drink a lot may need to catheterise six or even eight times. With practice catheterisation becomes quite easy and may take less than five minutes. Before starting intermittent catheterisation some people may have needed several courses of antibiotics for their urinary infections. But, after they start using catheterisation, their urine becomes quite clear once catheterisation has removed the stagnant pool of residual urine. They cease to get attacks of pyelonephritis even though, when their urine samples are examined, they often show a mild infection. These mild infections are better left untreated: they do not spread to the kidneys so long as the bladder is not allowed to remain full. Twenty-five years of experience of intermittent catheterisation has shown that it actually prevents damage to the kidneys as well as improving those already damaged.

How to prevent urinary infections

It is always important to drink fluids to "flush out the kidneys", but this is less effective if the bladder is not emptying properly. It does however work very well in those who use intermittent catheterisation and do it frequently enough.

People with spina bifida are often constipated and pressure from an overfull bowel may add to the difficulty of emptying the bladder. They may also have poor control over their bowel in the same way as they have over the bladder. Since most urinary infections are caused by bacteria which normally live in the bowel, it is important to wash this part of the body carefully. Girls should be taught always to wipe from front to back and not from back to front.

Antibiotics and other medicines are sometimes given in small doses for months or years to prevent urinary infections. They are mainly used for children who have reflux or for anyone with damaged kidneys to protect them from further harm. In spite of this, urinary infections may still break through and need a course of a different treatment.

Other remedies
Many remedies have been used over the years to prevent or relieve urinary infections and two of these are worth mentioning: Vitamin C (ascorbic acid) and cranberry juice. Vitamin C acts by making the urine acid and this discourages some of the bacteria which cause urinary infections. Cranberry juice helps to clear infections and debris after operations on the bladder. If enough is given, cranberry juice may also help to prevent urinary infections.

Key points

  • In people with spina bifida urinary tract infections are mainly due to the bladder not emptying properly.
  • Poor drainage from the bladder encourages infections to spread to the kidneys where they may cause damage.
  • Good drainage is as important as fluid intake.
  • Intermittent catheterisation ensures good drainage and protects the kidneys. It also makes incontinent people much drier.

Controlling continence

Wouldn't you like to be in control?
Not being able to control your urine or faeces is probably one of the hardest problems you face. The problem arises from not having control over the emptying of your bladder or bowels - the places where urine and faeces collect before leaving your body. Many people with spina bifida and hydrocephalus do manage to work out a routine which helps them stay clean and dry.

There are lots of reasons why your bladder needs to be emptied regularly. Most important is the need to prevent infection and to keep your kidneys healthy. A routine which works well will keep your skin dry and so help stop pressure sores. And remember, it's not very pleasant to smell of urine - either for you or those around you.

Helpful hints

  • Drink plenty of fluids to keep your urine clear and your kidneys healthy.
  • Don't have too many drinks which contain caffeine such as coffee, tea or Coke. Caffeine upsets the bladder which may lead to more infections. Drink fruit juices, particularly cranberry juice - they are better for you.
  • Drink less beer, wine and other alcoholic drinks. If you drink too many of these, they can play havoc with your bladder management. If you drink too much alcohol, you may forget to empty your continence bag and this might leak - causing you and your friends a lot of embarrassment. When you go drinking with friends, order low-alcohol lager or wine. These give the taste without the alcohol.

Different ways to empty your bladder properly can include:

  • Using a catheter. Some people use a catheter (or tube) to empty their bladder every three or four hours. You may hear this called Clean Intermittent Catheterisation (CIC).
  • Indwelling catheter. This stays in the bladder all the time and drains into a bag.
  • Penile sheath (for boys only). This fits over the penis and also drains into a bag.
  • Medicines from your doctor.
  • Operations. There are several different operations available to help bladder control. Ask a continence adviser or your doctor if you want to know more about these.

Emptying your bowel will help stop you from becoming bunged up or leaking on your underwear.

Helpful hints

  • Drink plenty! This helps keep the faeces soft, so going to the toilet is easier.
  • Eat a high-fibre diet - lots of fresh fruit, vegetables and cereals.
  • Exercise helps to keep your bowel fit!
  • To help you go at your usual time, sit on the toilet after a meal or hot drink, take a big breath and push hard. A continence adviser could explain this more fully to you.

Different ways to empty your bowel properly could include:

  • Enemas or suppositories. These have to be prescribed by your doctor or continence adviser. They are put inside the bottom as high as possible and help to get things moving.
  • Medicines from your doctor.
  • Sometimes just stroking the entrance to the bottom can help you get the urge to go to the toilet.
  • High bowel washout. Your continence adviser will show you how to put a special tube into your bottom and then put water up the tube to help the faeces come out.
  • Operations. There are several operations which may help control your bowel. Ask a continence adviser or your doctor if you want to know more.

Daily Check List to Improve your Bladder and Bowel

  1. Always drink lots of fluids. Cranberry juice is good for you.
  2. Try not to drink too much coffee, tea and Coke.
  3. Make sure that your bladder empties properly.
  4. Eat a good diet. If you don't know the right kinds of food, ask.
  5. Do some exercise every day.

Continence links

Continence management and spina bifida - http://spinabifida-incontinence.info/sitemap.htm

European Society for Paediatric Urology - www.espu.org

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