Spina Bifida and Incontinence Condition
Spina bifida occurs when the spinal cord and vertebrae fail to develop properly in the womb. This ‘fault’ leaves a gap or a split in the spine. Spina bifida affects the central nervous system.
Spina bifida can be identified by a sac or cyst located on the back covered by a fine layer of skin.
There are several types of spina bifida including ‘Spina Bifida Cystica’, which is split into two main conditions
- Myelomeningocele – this is the most common and most serious form of spina bifida. The cyst will contain tissue, cerebro-spinal fluid, nerves and part of the spinal cord. The spinal cord is usually damaged or not fully developed. There is usually some form of paralysis or loss of sensation below the damaged area
- Meningocele – the cyst will usually contain tissue and cerebro-spinal fluid only. There may be some development issues with the spine but impairment will be less than those with myelomeningocele
‘Spina Bifida Occulta’ is a very mild form of spina bifida and account from around 5 – 10% of those affected by the condition. Usually people with this form of spina bifida show no symptoms or have very few problems.
‘Encephalocele’ is a sac that forms when the bones of the skull fail to develop fully. The sac may contain only cerebro-spinal fluid or part of the brain which will lead to brain damage.
Common conditions associated with spina bifida
- Mobility difficulties
- Bladder, bowel and gastrointestinal disorders
- Latex allergy
- Skin disorders
- Learning difficulties
- Sexual dysfunction
Why might a person with Spina Bifida become incontinent?
Most people that have spina bifida will have continence issues. For most the messages between the brain and the bladder and bowel are broken, which can result in loss of sensation or lack of sphincter control. Mobility issues can also contribute towards incontinence.
Common continence issues that people with spina bifida have are:
- Overflow incontinence
- Neurogenic bladder – which can lead to symptoms of frequency, retention, urgency and nocturia
To find out about treatments for incontinence associated with Spina Bifida and further resources, click the links above to navigate to the pages.
Spina Bifida and Incontinence Treatments
There is plenty that can be done to help improve incontinence in people with Spina Bifida. There are many conservative methods, which can help improve or it may be a case of adjusting your medication to help alleviate your symptoms. If conservative methods alone are not effective then there are many medications available. As a last resort, if incontinence symptoms are severe then you may be recommended surgery in order to improve your quality of life.
Diet and Lifestyle
It is important to keep the bladder and bowel as healthy as possible and that you eat a healthy, balanced diet with plenty of fibre and consume enough fluid (ideally water and around 6-8 glasses a day) in order to regulate the bowel and keep stools at the right consistency to avoid constipation. It is best to limit or avoid caffeine, fizzy drinks and alcohol as these can irritate the bladder. If you are suffering from urinary incontinence, it may appear to be counter-intuitive to drink more fluids but over time the bladder will adapt to the correct volume and less concentrated urine will cause less bladder irritation and cut the risk of bladder infections.
Bladder and/or Bowel Retraining
Bowel retraining and bladder retraining involves establishing your bladder or bowel into a regular routine and retraining your brain to hold on. You start by going to the bathroom when you get the urge to go and hold for 1 minute before sitting down. Gradually increase the length of time until the you feel more confident with your control. It is also helpful to regulate the times that you visit the toilet. This may alo help to avoid accidents. Make sure that this is at a time that is comfortable and allows enough time so that you don’t feel anxious. Some people also like to record a bladder/bowel diary to see if any foods or drinks affect function.
Creating a routine can help to avoid accidents. It can help to go to the toilet after every meal or every few hours and make sure you are eating and drinking at regular times. Limit drinks two hours before bedtime to avoid accidents overnight, it is important to make sure that you have had enough to drink during the day though.
Urodynamics will usually be performed on a yearly basis in order to check your bladder and kidney function. It is important that these checks take place as urine retention in the bladder can cause urine to backflow into the kidneys and damage the kidneys.
Urodynamic tests can include
- Urine tests
- Blood tests
- Ultrasound of the bladder and kidneys
- Cystogram – an x-ray scan where a dye is injected into the bladder via a catheter
- Cystoscopy – a fine telescopic instrument is inserted into the urethra and up into the bladder
There are many products available that can help you to feel more comfortable and will protect clothing and furniture. These products may be helpful to those who suffer from mobility issues coupled with urgency.
Incontinence pads and pants – these are available in a variety of sizes and absorbencies and can help to draw fluid away from the skin
Male continence sheath – these can be worn over the penis and attached to a leg bag. These are particularly useful at night
Bed pads and mattress protectors – these can help to keep the bed clean and dry. There are also covers and pads available for chairs
Visit the Bladder & Bowel Home Delivery Service for more information and to order these products. Our caring, specially trained advisors can help you decide which option is most suitable for you.
Intermittent Self Catheterisation
If you are retaining urine and unable to empty your bladder effectively then you may be taught intermittent self catheterisation (ISC) as a method for emptying your bladder. This will also help to eliminate overflow incontinence. ISC involves inserting a fine tube into the urethra to drain urine out of the bladder. Cleanliness is a vital part of the preparation in order to avoid introducing infections into the bladder. There are various types of catheter, most are designed to be used once and then thrown away. Your healthcare professional we help you decide what is best for your needs.
To find out more about Intermittent Self Catheterisation click here.
If long term catheterisation is needed and you are not suitable for intermittent self catheterisation then you may be advised to have an indwelling catheter fitted. This involves inserting a fine tube through the urethra up into the bladder. This can be attached to either a valve or a drainage bag. The catheter will need to be replaced every few weeks. For more information on Indwelling catheters click here.
Some spina bifida patients are less mobile, this can lead to constipation, which then can in turn lead to overflow incontinence. To relieve constipation quickly, there are some over-the-counter laxatives that can be purchased. These can be used in order to avoid impaction of the bowel and any overflow incontinence as a result. There are a variety of laxatives available that act in different ways. Bulking laxatives such as Fybogel, which work in the same way as increasing fibre in their diet; osmotic laxatives, which work by softening the stool making it easier to pass, and stimulant laxatives such as senna, which encourages peristalsis and stimulates the gut to pass the stool. Make sure that you speak to your local pharmacist or GP about which type of laxative is best to use.
Enemas/ Rectal Irrigation
Rectal irrigation is also known as anal irrigation or trans-anal irrigation is a method that involves emptying the bowel by ‘washing it out’ using a specialised pump, water and irrigation tube. This is an effective treatment in the management of chronic constipation and faecal incontinence.
Enemas can be used to clear impaction from severe constipation and involves administering a solution such as water and sodium phosphate to clear the bowel.
There are several medications available which can help prevent spasms of the bladder muscle, which can help reduce urgency and frequency incontinence associated with a neurogenic bladder; they belong to a group of medicines known as antimuscarinic or anticholinergic drugs. Below is a list of some medications that may be prescribed and links to more information. These medications are not suitable for some people so it’s important to check that it is safe for a patient to take these.
Betmiga is an oral medication, which acts as a muscle relaxant and can be used to treat frequency and urgency if conservative methods or traditional anticholinergic medications haven’t worked. Some people experience side effects on this medication, you can find out how Betmiga works here.
Antimotility/ antidiarrheals such as loperamide, more commonly known as Imodium can be purchased over-the-counter. They work by slowing the gut transit making your stools firmer and pass less frequently. It is important not to use this medication if the person has diarrhoea with blood and/or mucus or has a temperature. Some people find that this type of medication increases pain and bloating in the stomach.
This is an alternative form of long term catheterisation and involves a small surgical procedure to place a tube directly into your bladder through your abdomen. Again you can attach the tube to a valve or a drainage bag. For more information of Suprapubic Catheters click here.
A mitrofanoff is a continent stoma that is created using a small piece of your appendix of small bowel to create an opening low down on your abdomen or through your belly button. The opening will be connected to your bladder and a catheter can be inserted into the opening as a method to empty the bladder.
Urostomy (Ileal Conduit)
The most common type of urinary diversion a is the creation of a urostomy or Ileal Conduit. This involves creating a stoma using a piece of your small bowel which will be attached to your ureters. This stoma will come through your abdomen and you will be required to wear a specially designed ostomy bag over your stoma to collect your urine. You can then empty your bag periodically throughout the day.
In instances of severe constipation and medication has found to have no effect, you can undergo a procedure called ACE (Antegrade Colonic Enema).
This procedure involves creating a continent stoma from usually the appendix but can also be from the small bowel. An small artificial opening in created low down in the abdomen or through the belly button. A catheter can be inserted into the stoma and a washout solution injected to carry out a controlled bowel movement. Further information on the ACE operation can be found here.
If you are suffering from severe faecal incontinence and your spina bifida causes significant mobility or dexterity issues then your surgeon may recommend a bowel diversion in the form of a colostomy. A colostomy involves making a small incision in the abdomen and then pulling through a section of your colon to the surface and sewn to your abdomen, creating an artificial opening called a stoma. Your stool will then be collected in a small pouch that attaches to your stoma. Colostomies can be temporary or made permanent. They are usually a last resort surgery if all other methods have not been successful.
Further information and downloads can be found in the help and information section. Living with a bladder or bowel condition or caring for someone with a bladder and bowel condition can affect you emotionally and socially; sometimes it can help to speak to others who understand your situation. The Bladder & Bowel Community Forum is available 24 hours today and will allow you to connect with those who share your condition. Start your own topic today or just follow one that interests you.