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 PDF document is intended to help this group to look at their bowel and bladder management.
Most people with spina bifida will have bowel problems. These may include constipation, diarrhoea, and faecal overflow, or a combination of all three. You need to know what your faeces should look like - you need to aim for it to be firm but not hard, well formed but not knobbly.
If you have never been given appropriate advice about bowel management you will probably be wearing pads with all the accompanying difficulties (leakage, odour control, sore skin, etc.).
Keeping yourself constipated may seem like an easy option, but used over a long period can result in complications, including a condition called mega colon. It can also cause faecal overflow; you need to be aware of the difference between diarrhoea and faecal overflow - many people think that they have diarrhoea when in fact it is overflow. If this leads to incorrect treatment, i.e. giving anti diarrhoea medication, and your bowel management will worsen. Also be aware that faecal overflow can be misdiagnosed as Irritable Bowel Syndrome and will need investigating.
You may like to try a different way of dealing with your bowels (please see PDF document for hints and tips on different ways to deal with your bowels).
It is never too late to change!
You may not be able to achieve bladder continence until you have achieved bowel continence.
Hopefully you may have been seen by a urologist at some point in your life and will therefore understand the importance of achieving urinary continence. The priority when managing your bladder is to preserve kidney function. If regular assessments are not carried out, irreversible kidney damage may result. A bladder which does not work normally might:
  • cause urine to flow back to the kidneys;
  • not empty completely, and this could lead to urinary tract infections
Good bladder management should include:
  • Referral to a urologist with an interest in the neuropathic bladder (a bladder whose nerve supply may be interrupted, e.g. as with spina bifida).
  • Access to a continence adviser with knowledge of the neuropathic bladder.
  • An explanation of how good bladder management will protect your kidneys.
  • Regular urodynamics to check bladder and kidney function (see SBHI's information section ‘Bowel and Bladder investigations’).
  • Ability to recognise urinary tract infections and know how to deal with them.
There are several ways of managing urinary incontinence. Adults do not need to be sitting in wet pads.
Talk to your urologist or continence advisor about:
  • CIC or ISC (Clean Intermittent Catheterisation or Intermittent Self Catheterisation - see SBHI's information section on ‘Catheterisation’).
  • Medication to ‘calm’ the bladder (where appropriate).
  • Urinary sheaths (for men only) - a device similar to a condom with a hole in the end which is attached to a bag.
  • Long term catheters into your bladder via the urethra (tube that urine comes out of) or through a small incision in the abdomen (belly) called a supra-pubic catheter. Both types of catheter will need frequent changing either by the district nurse or at the hospital.
  • Various surgical options, some of which are not suitable for everyone. Ask your GP to refer you to a urologist to discuss your options. (It may be helpful for you to read SBHI's information on ‘Mitrofanoff’ and ‘Urostomy’).
Remember to drink at least one cup of fluid each hour during the day. Avoid ‘brown’ drinks (tea, coffee, cola, etc.), anything with caffeine, and fizzy drinks. 
Clear fluids are best - there is nothing wrong with tap water! To help avoid urinary tract infections drink a glass of cranberry juice each day, 2 glasses a day if you have a current urinary infection. Cranberry tablets and capsules are also available, but are less effective than the juice. NB Do not drink cranberry juice or take tablets/capsules if you are taking a blood thinning drug such as Warfarin or Aspirin.
Taking control of bladder and bowel continence is a big step towards achieving the independence that you hope for, expect, and deserve.

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