Continence

Bowel and Bladder Issues

Continence issues are common in people with spina bifida and hydrocephalus.

Many with spina bifida can experience bladder and bowel incontinence. People with hydrocephalus may experience bladder incontinence but bowel incontinence is less common.  

Bladder or bowel incontinence can be difficult to deal with and can really affect your mood and confidence, but they can be managed. It’s important to make sure you’re getting the right support to limit the effects of continence issues on your daily life – read on for some tips that may be helpful.

 

What are continence issues?

They’re problems with your bladder and bowel function.

• Your bladder is the organ that stores urine. It relies on nerves to pass on the message that it’s full, and other nerves to control when it empties.
• Your bowel is a long tube that carries food from the stomach to the back passage (anus). As the food travels along the bowel, it is digested, and the waste is passed out as faeces when you go to the toilet.

 

Bladder incontinence

• You may have a bladder that leaks constantly – this is sometimes called a “low pressure” bladder and it’s unlikely to damage your kidneys.
• If you have a “high pressure” bladder, a fault in the nerves can cause the bladder to contract before it contains much urine. You’ll pass urine frequently and get sudden urges that you need to go to the toilet. As the urine is stored at high pressure, this type of bladder incontinence can damage the kidneys over time.

 

Urinary tract infections (UTIs)

 UTIs are common and may need treatment, so make sure you know the symptoms. They may include:

• back pain
• nausea
• chills
• change in the appearance of your urine
• strong-smelling urine
• pain when you pass urine

If you have any of these symptoms, contact your GP.

 

Bowel incontinence 

• The nerves that run through your spinal cord also control the bowel and the sphincter muscles that keep faeces there.
• Bowel incontinence can involve periods of constipation, followed by diarrhoea or soiling.
• People with spina bifida often have damage to the nerve supply to the bowel, which means the time taken for food to move through the intestine is slowed down.
• Faeces stays in the lower part of your intestine for longer, becoming dryer and harder.
• You may not get the sensation that tells you it’s time to empty your bowel, causing leakage.

 

Why it’s important to deal with continence issues

Most people find it difficult to talk about continence problems. Try not to be embarrassed about speaking to your doctor, as there are lots of benefits to dealing with these issues.

• Bladder and bowel incontinence can have a big impact on your confidence and self-esteem. They can be a major cause of low mood and anxiety.
• They may get in the way of your daily life and relationships. Lots of people arrange their lives around continence issues, which can be very limiting – you may avoid going out and doing things you want or need to do. And it may feel challenging to get intimate with someone else when continence issues aren’t managed.
• If continence issues are getting worse, it’s possible other symptoms are also getting worse, and they can be a sign you need to see your doctor.
• There’s lots of support available to manage continence issues, so there’s no need to put up with them. You may have been managing in the same way for a long time, but other options may be more suitable for you now, so ask for a review.

 

Management options for bladder incontinence

The main aims are to protect the kidneys from damage, prevent infections and to

achieve dryness.

 

Medicines

These may include:

• antibiotics to prevent urinary tract infections
• medicines to help relax the bladder so it can store more urine

 

Clean Intermittent Catheterisation 

This is a method of completely emptying the bladder at regular times during the day

without the need for a catheter to be left in place.

A fine plastic tube (catheter) is inserted into the bladder via the opening through which we pass urine (urethra) and removed once the bladder is empty.

The reason for this is to prevent urine “refluxing” back up to the kidneys therefore helping to prevent damage. It also helps adults to be more independent as this can be carried out without any assistance in most people whilst sitting on a normal toilet or even in a wheelchair.

You will be taught to use this method by a specialist nurse until you are comfortable carrying it out. The nurse will also discuss the many types of catheters available and help find the most suitable.

 

Bladder augmentation

This is a surgical procedure in which a piece of bowel, stomach or ureter (the tube which carries urine from the kidney to the bladder) is used to enlarge the bladder. This allows the bladder to hold more urine at lower pressure, however clean intermittent catheterisation is necessary after this procedure.

 

Procedures to tighten the urethra

The urethra can be tightened by using a piece of the lining of the abdomen. Another method is to place an artificial sphincter around the urethra and pumping a valve which is placed in the scrotum in boys or the labia in girls which activates the sphincter. This causes water to fill up the sphincter and gently compresses the urethra, preventing leakage.

 

Continent diversion (Mitrofanoff procedure)

A channel, using the appendix, ureter, a piece of bowel or Fallopian tube is brought to the surface of the skin on the abdomen. It is a stoma which joins the bladder to the abdominal wall and is visible as a small opening on the skin with no need to attach a bag, although there is the option of covering it, for example when swimming.

With this method, urine is drained from the bladder several times during the day using a disposable catheter. It is like Clean Intermittent Catheterisation except that the urine is drained through the stoma. This is a major surgical procedure and requires a full understanding and discussion with the Urologist of what is involved before deciding on this method.

You may also wish to talk to someone else who has had this carried out and the SBH Scotland Support Team may be able to help with this. Contact the SBH Scotland Helpline on 03455 211 300 or you can fill in this form to get in touch with our services team.

 

Botox

 While it is not suitable for everyone and works best in bladders which show an overactive bladder muscle, Botox can help. A doctor injects Botox into the bladder muscle to stop it contracting.

 

Top lifestyle tips to manage your bladder issues

 

1) Drink plenty of fluids to keep your urine clear and your kidneys healthy.

 

2) 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

fresh fruit juices, particularly cranberry juice - they are better for you.

 

3) 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 catheterise which could cause

complications, or, if you have an indwelling catheter you may forget to

empty your continence bag and this might leak. When you go drinking

with friends, order low alcohol lager or wine. These give the taste without

the alcohol.

 

Management options for bowel incontinence

 

Medicines

These may include suppositories, enemas and laxatives. Laxative medicines may be important for encouraging bowel movements – some people think these can make your bowel “lazy” but in spina bifida, these medicines are often essential, although you should only take them if prescribed by your doctor.

 

Washout techniques

There are many techniques now available, involving washing out (or irrigating) the lower and middle part of the bowel. This means that the lower bowel is kept empty of faeces for 24-48 hours after the washout which helps to prevent soiling. Speak to your local continence nurse for further advice.

 

Anal plugs

Anal plugs are made of a soft material (foam or silicone) compressed to the size of a small suppository and covered with a thin, water-soluble film. It’s inserted into the anus and has a gauze string attached for removal. The film dissolves as it comes into contact with the warmth and moisture of the lower bowel, so the plug can expand and act as a barrier, preventing leakage.

You should make contact with your local continence service for more details.

 

Surgical procedures

 These may include:

·        Antegrade Colonic Enema (ACE) is a procedure where the appendix is brought up to the skin to act as a “tube” into the bowel. It looks like an extra tummy button and is known as a continent stoma, which means it does not leak and you don’t need a bag. A very thin catheter is passed through so the bowel can be “washed out” from above every 24 – 48 hours. This is usually done with salt water, but sometimes laxative medication is added.   

·        Colostomy is an opening (stoma) that connects the bowel to the surface of the abdomen. A bag is attached to collect faeces and gas, and you’ll need to change it regularly. A specialist nurse will talk to you about how to manage the stoma. Some people find regularly “washing out” the bowel clears the stoma and prevents the need for a bag.

 

Top lifestyle tips to support you with bowel incontinence

1) Drink plenty of fluids. This helps keep the faeces soft, so going to the toilet may be easier and you are less likely to get constipated.

2) Diet is important. Try to eat a high-fibre diet with lots of fresh fruit, vegetables and cereals.

3) Exercise can help to keep your bowel fit.

 

Looking after catheters and stomas

To reduce the risk of UTIs, make sure that you:

• wash your hands with warm water and soap before and after touching the catheter equipment
• drink plenty of water
• wash the area your catheter enters your body with water and mild soap every day
• always have your drainage bag on a lower level than your bladder

If you are getting persistent UTIs and you use a catheter, review your technique and reach out to a healthcare professional for support.

 

To clean a stoma site:

• use recommended products
• gently wash the stoma site with warm water using a clean dry wipe to pat the area dry thoroughly

 

How to get the right support

Make an appointment with your GP if you think any continence issues may be getting worse. Remember that you shouldn’t be putting up with symptoms such as a leaky bladder or constant trips to the toilet – if it’s getting in the way of your life, it’s time to get support.

Ideally, you should be under the care of a specialist, so ask your GP for a referral. Unfortunately, continence problems aren’t always prioritised. Plus, GPs may not understand that continence issues have a specific cause in spina bifida/hydrocephalus, or that conventional advice may not be effective.

Our nurses can support you to speak to your doctor and get the right care, contact the SBH Scotland Helpline on 03455 211 300 or you can fill in this form to get in touch with our services team.

 

How you can help yourself

• Get into a routine: Routine is important as it can help you structure when you use the bathroom. Using the toilet a half an hour after meals and every few hours during your day. Make sure you’re drinking and eating at regular times throughout the day and try limiting fluids a few hours before bed.
• Check your diet: Eating the right foods can also help with incontinence. To avoid constipation, you need foods containing fibre such as wholemeal bread, fruit, vegetables and beans.