Most people with spina bifida have varying degrees of neuropathic bladder and bowel, when damage to the nerves interferes with normal bladder and bowel working.
The kidneys produce urine, which is collected in the bladder. When the bladder is full, the sphincter opens and the bladder muscle contracts to empty the bladder completely. This is under the control of nerves.
The priority when managing a neuropathic bladder is to preserve kidney function.
It is very important to manage continence well, and to have regular assessments from infancy through adulthood, to protect your kidneys and reduce the risk of kidney damage.
Early referral to a medical specialist for assessment of kidney and bladder function is essential. The specialist would ideally be a urologist or paediatric surgeon with an interest in spina bifida.
A bladder which does not work normally might:
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 particular risk of developing kidney damage. This is usually a temporary measure.
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, i.e. water. When mixed feeding begins, encourage a wide range of vegetables, fruit and cereals, and continue to encourage the taking of extra clear fluids.
These are the important years where the aim is to work towards continence as well as keeping the kidneys safe.
Renal tract investigations 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, one glass a day is recommended.
A varied diet containing vegetables, fruit and cereals will help to keep the motions soft and easier to pass. Avoid eating too many foods 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.
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.
As the bladder impairment may change, it is important to maintain monitoring of the renal tract by your 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 an educational statement, if the child has one. Talk this over with professionals like the specialist urology nurse, school nurse, continence adviser, or Shine specialist adviser.
Facilities should be available for children to carry on 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.
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, many people find that food and drinks containing caffeine, such as chocolate, cola and coffee, stimulate the bowel and can result in incontinence.
Remember those extra fluids!
It is very important to have regular assessments, at least yearly, to reduce the risk of irreversible kidney damage.
Puberty may bring about changes in bladder and bowel function, and some surgery is best left until after this time. Queries relating to sexual activity will need to be answered and issues should be discussed with the consultant, specialist nurse or a Shine specialist adviser.
Regular reviews of bladder and kidney function often stop during the transition to adult services. However it is essential that investigations continue yearly, as renal function can deteriorate during adulthood. Discuss this with your GP, or a Shine specialist adviser.
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 a Shine specialist adviser.
If you have spina bifida, you may experience a range of bladder and bowel issues - these vary considerably from person to person and are caused by damage to the nerves which can interfere with normal function. For more information about good continence care, from infancy through adulthood, click here:
Parents and carers often ask Shine for recommended books about continence so that their children can become continence confident. Shine, as well as other charities and organisations, have several publications to help children to understand their condition, click here for a book list.
