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 bladder and bowel working.

The priority when managing the neuropathic bladder is to preserve kidney function. If regular assessments are not carried out, irreversible kidney damage may result.

Early adult life

Early adult life 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.

IT IS IMPERATIVE THAT RENAL INVESTIGATIONS CONTINUE TO BE CARRIED OUT ONCE A YEAR. RENAL FUNCTION CAN STILL DETERIORATE.

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.

Explaination 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.

If you have a problem or query you can ASBAH’s Helpline on 0845 450 7755 Monday – Friday at local call rates or email via helpline@asbah.org.

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