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Introduction

Spina Bifida and your bladder and bowels Managing bladder control from birth can help people with spina bifida avoid potentially serious complications. Read more
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The effect on bladder and bowels when living with Spina Bifida

Because most people with spina bifida find it hard to tell when their bladder and bowel are full, they often have trouble controlling the release of urine and stool.

These symptoms need to be managed from birth to avoid troublesome complications such as kidney damage, urinary tract infections and abdominal pain. The following section describes some solutions: 

Unable to empty the bladder

  • Clean intermittent catheter (CIC) (link to description)

If required CIC is typically introduced immediately after birth to prevent kidney damage. Initially the parents will have to do the procedure but when capable the child should take over the responsibility – typically from 8-9 years of age.

 

Leaking urine

  • Urisheaths (link to description)

Beyond four years of age wearing a diaper/pad may affect the social life and here urisheaths is a viable alternative for boys and men.

 

Chronic bowel leakage/incontinence

  • Peristeen anal irrigation (link to description)
  • Peristeen anal plug

Constipation in itself is very painful and beyond four years of age wearing a diaper/pad and smelling of faeces is likely to affect the social life.

 

Spina bifida in numbers

Spina bifida is a birth defect of the spine. The number of children born with spina bifida is declining due to a combination of more women taking folic acid supplements before and after conception and screening programs to identify the condition early in pregnancy.  In Europe, approximately four out of 10,000 children are born with spina bifida.

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Good to know

How can I deal with my bowel issues?

How can I deal with my bowel issues?

Issues such as bowel leakage and constipation are a common symptoms of conditions that cause damage to the central nervous system.

How to deal with bowel issues
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How can I deal with my bowel issues?

Nerves in the spinal cord control bowel movement and if they are damaged, the feeling of needing to empty the bowel and the movement of stools through the body are affected. As a result, it can be difficult to tell when your bowel is full, and you can also have trouble controlling the release of stools. This can lead to different types of bowel problems: 

  • Bowel leakage
  • Constipation
  • A combination of the two

 

Bowel leakage

Bowel leakage occurs when you are unable to control your bowel muscles. This can result in accidental leakage of stools or having to rush to the toilet. Bowel accidents can be a distressing experience and can also lead to skin irritations and bladder infections, all of which can greatly affect a person’s confidence and general well-being.


Constipation

Constipation occurs when stools in the bowel stay there for too long and become hard and dry. This makes it difficult to pass stools and results in the inability to have a bowel movement. Symptoms vary from person to person but the most common are straining, bloating and severe discomfort.

You may experience a combination of both bowel leakage and constipation – when softer stool or fluid leaks past hard stools stuck in the colon – often culminating in a bowel accident.

Whatever issues you are dealing with, it’s important to find a bowel routine that enables you to continue with your daily life in confidence.

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Manage your bowels with Peristeen®

Manage your bowels with Peristeen®

Peristeen is an innovative anal irrigation system from Coloplast for people who experience fecal incontinence or chronic constipation. Using Peristeen minimizes the likelihood of involuntary bowel leakage.

Learn more about Peristeen®
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Manage your bowels with Peristeen®

How does it work?

Peristeen empties the bowel by introducing water into the bowel using a rectal catheter. It is performed while sitting on the toilet. The water is then emptied from the bowel, along with the stool, into the toilet. The lower part of the bowel is emptied so efficiently that most users only have to irrigate every other day.

Used routinely, Peristeen may help reduce the physical discomfort and mental worry of bowel leakage and constipation, making it easier to take part in social activities, go to work or travel.

The benefits of using Peristeen:

  • Prevents bowel leakage and constipation for up to two days
  • Enables you to decide when to empty your bowels.
  • Lets you choose what time of day you want to irrigate, so it fits in with your lifestyle
  • Improves quality of life

 

And that’s not all…

By minimizing the risk of bowel accidents, Peristeen minimizes the likelihood of skin irritations. It may also help prevent urinary tract infections and help reduce flatulence.

Learn more about Peristeen or contact Consumer Care.

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Bladder care from infancy to adolescence Children with spina bifida have to empty their bladder using a catheter. As the child gets older, and in order to keep their bladder healthy, it may be necessary to change the product from time to time. Bladder problems for children with SB
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Bladder care from infancy to adolescence

The importance of a bladder emptying routine

A good bladder care routine is essential; both in terms of good health and for helping the child become independent faster.

The goal of good bladder care is to:

  • Prevent damage to the kidneys and infections in general
  • Be continent
  • Improve the child’s quality of life
  • Help them become independent

Taking responsibility

Once the child is confident emptying their bladder with a catheter, it’s time to let them take responsibility. A catheter that worked fine when they were younger may not be the best choice any longer.

When discussing product choice with a healthcare professional, it’s important to stress which product features are important to your child. You should also remember that it’s important any new product is a good fit with your child’s lifestyle.

The product should always be:

  • A safe and secure solution
  • Easy to use
  • A good fit for daily life

Safe and secure

Safety is the key factor when it comes to choosing a catheter. Consider the following:

  • Does it empty the bladder completely and in a fast/efficient way?
  • Does it come with an integrated coating to make it smooth, and is the coating well protected in the packaging during storage and transportation?
  • Does it contain anything that your child is allergic to or materials that can harm your child?

Ease of use

If the catheter is straightforward to use, your child will be able to take over responsibility faster while the time needed to empty the bladder will be minimised. Consider the following:

  • Is the catheter ready to use or do you need to bring/apply e.g. water or gel?
  • Is the catheter intuitive to use / have few handling steps?

Compatible with your child’s lifestyle

This has a huge impact on compliance – if a catheter does not suit the lifestyle of the child, the risk of not emptying the bladder 4–6 times a day increases and this can lead to infections and other severe conditions. Some things to consider:

  • Does the catheter’s size and shape help it blend in easily so that nobody will notice it in a bag or pocket, especially when out and about?
  • Will your child have to use several accessories (extension tubes, urine bags, application guides, etc.) and can it be difficult to assemble these?
  • The need for a helper. With some products, somebody with reduced dexterity will need a helper. Other products are more suitable for less dexterous hands and will naturally provide greater freedom for the person.

As the child becomes an adolescent, it may be harder to pick up on lack of compliance in terms of their bladder care routine as their contact with the healthcare system decreases. This can lead to an increased risk of infections so it’s important your child keeps up their good habits.


The more discreet the better

No young person wants to be singled out as different, so it’s important their catheterisation routine doesn’t attract unnecessary attention. The catheter should be discreet and fast and easy to use.

If a product is bulky, medical-looking or difficult to prepare, the young person may choose to skip social gatherings or even skip emptying the bladder when not at home, and thus risk damaging the urinary system.

There are a number of products available today that can help meet these needs. The benefits of this kind of product include:

  • Ready to use (no water or lubrication needed)
  • Non-medical look (colour and shape)
  • Intuitive handling (few steps and straightforward preparation)
  • Compact design (can easily and discreetly be brought along)
  • Set solutions (no need to bring additional accessories even if you can’t transfer to a toilet)

Coloplast offers a wide range of catheters, the most popular are called SpeediCath® and SpeediCath® Compact. [insert links to products]

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Frequently asked questions about bladder and bowel Spina Bifida can affect people’s control over their bladder and bowel. Here we detail some of the most commonly asked questions about this issue and provide some answers. FAQs on Spina Bifida

The bladder

 

Why does spina bifida cause bladder problems?

The bladder, which stores urine, is controlled by the nervous system. Because spina bifida causes nerve damage, bladder function may be affected. Some people find that they need to urinate more frequently or urgently, some experience urine leakage whereas others experience difficulty emptying the bladder.


How can bladder problems affect health?

If your bladder is not emptied regularly, it can cause infections. These start in the bladder but can move back to the kidneys and cause renal damage. Even small amounts of urine left in the bladder can cause infections.

Alternatively, if you cannot control the urge to urinate, you may leak involuntarily. Finding a way to take control of your bladder issues can help you stay healthy and confident.


What can I do to manage my bladder issues?

There are a number of methods and products available, including catheters, urisheaths for men and absorbent products. [link to Products]. Contact Customer Care to get help finding the right product for your needs. [link to Customer Care]


What is a catheter?

The catheter is a slim, flexible tube that is inserted into the bladder through the urethra to allow the urine to drain.


Does it hurt to catheterise?

No. You might feel some pressure when the catheter goes in. If you experience discomfort or if it is difficult to slide in the catheter, take a short break. Try to relax by taking a deep breath or by coughing. Talk to your doctor or nurse if you find it painful.


Can I just empty my bladder in the morning and in the evening?

No. You should follow the schedule your doctor has given you. As a rule, the bladder should be emptied at least 4–6 times a day.


Can I drink less so that I don’t have to empty my bladder so often?

No. It is very important that you drink enough. This keeps the urinary system clean and healthy.


What if the urine looks cloudy or dark and smells funny?

You may have an infection. Talk to your doctor or nurse.


What if I get frequent urinary tract infections?

Using an intermittent catheter increases the risk of urinary tract infections. However, compared to other catheter types such as permanent (indwelling) catheters, intermittent catheters are less likely to cause urinary tract infections. There are ways to reduce the risk of urinary tract infections:

  • Drink more fluid during the day – the principle is simply to wash out the urinary tract, providing you continue to catheterise
  • Make sure that the bladder is fully emptied every time you catheterise
  • Increase number of daily catheterisations
  • Ensure you have clean hands and equipment when catheterising
  • Reassess your intermittent catheterisation technique (insert link to animation)

 

What should I do if I am still leaking?

Urine leakage may occur for different reasons:

  • A urinary tract infection may cause urine leakage and you should contact your doctor if you suspect you have one. Typical symptoms to be aware of include:
    • Dark-coloured and strong-smelling urine
    • Cloudy urine
    • Blood in the urine
    • Fever/sweating
    • Bladder spasms
    • Increased muscle contractions in your leg
  • If you catheterise less than four times per day, the leakage may occur because you do not catheterise often enough.
    • Consider catheterising more frequently to prevent the bladder pressure from building
    • Make sure your bladder is fully emptied every time you catheterise. Reassess your intermittent catheterisation technique (link to animation)
    • If you are catheterising more than seven times per day and still have problems with urine leakage you may wish to consult your doctor (see below)
    • You may leak because you have involuntary bladder spasms/contractions (not caused by a UTI).
      • Talk to your doctor about the possibilities of being prescribed some medication that will relax your bladder
  • If the leakage mainly occurs doing physical exercise, you should consider catheterising before you start to exercise. 

The bowel

Why does spina bifida cause bowel problems?

Nerve endings in the rectum help to alert people of the need to pass a stool when it enters the rectum. In people with spina bifida, this message may become lost or incomplete increasing the risk of bowel problems such as constipation, faecal incontinence or a combination of both.


How can bowel problems affect my health?

Bowel leakage and constipation can be very uncomfortable, and they also have a significant impact on our quality of life. Apart from the frequent physical discomfort and bloating, you may worry about having an accident in public.

Therefore it is important to find a way to manage your bowel issues.

 

What can I do to manage my bowel issues?

Bowel problems can often be improved by changing diet. There are also several types of medication that can help. Bowel irrigation can be used to help prevent constipation and faecal incontience. You can read more about bowel management solutions here (link to bowel emptying section)


 

What is bowel irrigation?

Bowel irrigation is where water is introduced into the bowel using a rectal catheter. The water stimulates the bowel and flushes out the stool, leaving the lower half of the bowel empty. It is important to do it regularly to prevent constipation and the risk of bowel accidents.


 

How often should I irrigate?

For most people, every 1–2 days works well, It is important to do it regularly to prevent constipation and the risk of bowel accidents. It’s best to get into a regular routine, rather than changing too much. With time and practice you’ll find out what works best for you. If you are not sure, ask your doctor or nurse for advice.

 

What time of the day is best for bowel irrigation?

Try to get into a routine where you irrigate around the same time of the day. Eating and drinking helps the bowel’s natural movement, so about 30 minutes after a meal is a good time. But don’t be afraid to change the routine slightly to suit your day-to-day habits.

 

Can I travel with the bowel irrigation equipment?

Yes – remember to bring your irrigation system along with lots of disposable catheters as they may not sell them everywhere. If you are going to use the system abroad, use bottled or cooled boiled water in places where the tap water is not safe to drink. Remember in different time zones your body may take a while to get used to a new routine. You may also be eating different types of food, which can affect the bowel.

Does bowel irrigation hurt?

No, bowel irrigation does not normally hurt and is perfectly safe. However it may feel a little strange at first. If it’s uncomfortable when the water is pumped in, stop for a while and then continue. If you are in pain, stop irrigating immediately, deflate the balloon and remove the catheter. If the pain persists, contact your nurse or doctor for help.


Are there any risks or complications?

Some people experience minor problems, such as discomfort or a little bleeding. If the catheter is not inserted correctly, it can cause a hole or tear in the bowel. But this risk is very small if you follow the instructions you get from your doctor or nurse.

What should I do if I leak between irrigations?

If you experience bowel leakage between irrigations, the cause may be insufficient emptying of your bowel due to constipation or hard stools. Alternatively, you may be using too much water during irrigation. Contact your doctor or nurse to help you adapt to your bowel plan. A Peristeen Anal Plug may help if the problem persists.  (product link)

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Finding the right product Coloplast offers a wide range of products to help you manage your child’s bladder and bowel issues. Here are a few suggestions for what to look for when choosing the right product. Find the right product

References

 *Only for SpeediCath Compact female
**Only for SpeediCath Compact male

Bladder management

Products that can help manage bladder problems include: 

  • Catheters – for urinary retention (incomplete bladder emptying)
  • Urisheaths and urine bags – for incontinence in men

What to look out for when choosing a catheter

Finding the right catheter is very important in order to make sure that the bladder is emptied in a safe and efficient way with as little hassle as possible.

When talking product choice with the nurse or doctor, make sure you also explain about your life style, concerns, special needs, etc.

When choosing a catheter you should look for: 

  • Safety
  • Ease of use
  • How it fits you and your lifestyle

 

Coloplast offers a range of catheters. Here is a short description of the most popular ones.
SpeediCath® is:

  • Instantly ready to use – straight from the packaging
  • Intuitive handling – with no preparation required
  • Minimised risk of urethral damage due to hydrophilic coating of both catheter and eyelets

 

SpeediCath® Compact has all the benefits of the regular SpeediCath and more

  • Discreet – the most compact catheter for women and men
  • Non-medical design – so you can keep it your personal matter regardless where you are
  • More hygienic catheterization – with the easy grip handle*
  • Protection of the catheter and coating at anytime due to hard casing**

 

Bowel management

Products to help you manage your bowels include:

Transanal irrigation is a well documented technique for emptying the bowel. Water is introduced in the bowel via the rectum. The water is then emptied from the bowel along with the stools.

It enables you to empty your bowels on a regular basis, which helps prevent bowel leakage and constipation.

Peristeen® is a transanal irrigation system that offers predictable bowel management. As it only requires water, Peristeen is an effective alternative to other bowel management methods that call for the use of medication.

Peristeen:

  • Prevent bowel leakage and constipation for up to 2 days
  • Enables you to decide when to empty your bowels
  • Improves quality of life

The Peristeen Anal Plug is a simple, safe and discreet aid for bowel leakage.

  • Comes in two sizes – small and large
  • Can be left in for up for 12 hours
  • Easily to remove by pulling the soft gauze string attached to the plug

Small in size you can pop it in your handbag or pocket.

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Tips, tools and guides

Bowel emptying guides

Underneath you can find video guides for children and adults on how to use Peristeen® for anal irrigation.

Helping children manage their bowels with Peristeen®

Helping children manage their bowels with Peristeen®

Learning how to empty their bowels is an important step in every child’s development. Using Peristeen® can help them feel more confident and give them the freedom to take part in social activities.

Watch the step-by-step guide for children using Peristeen®
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Helping children manage their bowels with Peristeen®

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Most children with spina bifida, especially when they are younger, rely on their parents to help them empty their bowels. Traditional methods to prevent bowel leakage and constipation include change of diet, suppositories, enemas, constipates, stool softeners and laxatives.


More predictable

Some children, however, find these methods of treating the bowels ineffective, as you cannot schedule when you will have a bowel movement, which often results in bowel accidents.

Bowel irrigation is one type of bowel care routine that ensures bowel movements are both regular and predictable. If performed regularly, it will make your child feel more comfortable and prevent problems such as bowel leakage and constipation.


What exactly is bowel irrigation?

Bowel irrigation is when water is introduced into the bowel via the rectum, using a rectal catheter. The water stimulates the bowel and flushes out the stool. The process takes about 30–45 minutes. After irrigating, the lower part of the bowel is empty. Bowel irrigation is performed every 1 to 2 days.

 

It is important to do it regularly as:

  • Regular irrigation prevents bowel accidents, simply because the lower bowel is empty of stool
  • Regular irrigation prevents chronic constipation as it encourages bowel movements, meaning they become regular 

 

Until your child learns how to irrigate himself or herself, you need to make sure that it is done correctly and safely. Find a good, regular routine that works and encourage your child to take an interest. They will have to do it themselves when they are older.

It can be a good idea to keep track of your child’s progress. For inspiration, why not download and print a the Bowel Emptying Diary (pdf, 1MB).

Coloplast offers a bowel irrigation system called Peristeen®.

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Getting started using Peristeen®

Getting started using Peristeen®

Using Peristeen® to manage your bowels can be challenging at first, but with the right training and routine, you’ll soon start to see the benefits.

Watch step-by-step Peristeen® guide for adults
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Getting started using Peristeen®

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Using Peristeen® daily or every other day, as recommended by your doctor or nurse, helps prevent bowel leakage and constipation. This means that you don’t have to worry about leakage and can feel confident to do things you want to do.

 

Take your time

Using Peristeen® will mean having to get used to a new routine, but the effort will pay off. Regular emptying of your bowels can make a big difference to your quality of life.

The three most important things to remember when getting started: 

  • Use Peristeen® regularly. Keep to the plan that your doctor or nurse has recommended. Regular bowel emptying with Peristeen® helps prevent leakage and constipation. It can also reduce the time you need to spend taking care of your bowels. 
  • Find a time when you can empty your bowels without being disturbed or rushed. The exact time that you empty your bowel is not critical, but try to keep to the same each day, so that you get in a regular routine. 
  • Keep in regular contact with your doctor or nurse during the first few months of using Peristeen®. They can help you with any queries you might have and help you adjust your routine if needed. You can also contact Coloplast Consumer Care for advice and support.
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Teaching children to empty their bowels using the Poo Game When a child shows an interest in emptying their bowels, you should start to involve them. A fun way to do this is to use the Poo Game – a card-based game that teaches your child the basic steps of bowel management. The Poo Game

Becoming independent

As children develop, they want to become more independent. This is a natural part of growing up. The same goes for the child’s toilet habits. When you feel your child is ready, you can start teaching them about going to the toilet and emptying their bowels.


The Poo Game

The Poo Game is a set of cards that you can use to teach your child how to empty their bowel. The cards can be used to play different fun games that can be adapted to suit age and skills. Simply print the cards, cut them out and you’re ready to play.

The Poo Game has been designed to help you and your child learn toilet habits in a fun way. It’s simple to use and as the child gets the hang of it, it’s easy to make it more challenging. Have fun!

Download playing cards (pdf, 1MB)
Download instructions (pdf, 1MB)


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Remember…

The Poo Game is meant as a training supplement, not to replace actual instructions for use. Consult a doctor or a nurse to get proper guidance or training in how to use the bowel flushing product you have chosen and always read the instructions.

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Self-catherisation guides

Underneath you can find video guides for wheelchair users also and for different product brands; SpeediCath®, SpeediCath® Compact, SpeediCath® Compact Set.

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Helping children empty their bladder Because all children are different, it’s important to choose the catheter that’s right for their individual needs. Once they’re ready, you can help them learn how to empty their bladder on their own. Help your child to empty their bladder

Using a catheter to empty your child’s bladder

You will need to help your child urinate until they are about five years old. Most children with spina bifida cannot empty their bladder naturally, so you will need to use a catheter, which is a thin plastic tube that is inserted through the urethra and into the bladder. It’s a simple and painless technique.

 

Why bladder emptying is so important

It’s important that you and your child both understand why bladder emptying is so important and that you get into a good routine.


The goals of good bladder management are to:

  • Prevent damage to the kidneys and prevent infections in general
  • Get continent
  • Improve the child’s quality of life
  • Help the child become independent

 

If your child’s bladder is not emptied regularly, it can cause infections. Even small amounts of urine left in the bladder can cause infections.

 

Getting started

Before starting bladder emptying you should always consult a doctor or a nurse to get proper instructions in how to use a catheter.

Together with the healthcare professional, you will decide what type of catheter suits you and your child best and you’ll make a plan for how often to catheterise. Typically the bladder needs to be emptied 4–6 times a day – but this may depend on fluid intake and physical activities.

As a supplement you can use the animated user guides on this page to give you and your child a practical overview on how to catheterise. Choose the one that suits your child’s profile the best:

 

Coloplast also offers a step-by-step instruction you can print and bring to the toilet (pdf, 1MB).

 

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Helping your child learn

When your child starts to show an interest – normally between the ages of three and five – you should start teaching them to empty their own bladder. Coloplast developed Wee Games to help you and your child learn how to do this in a fun way.

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Teaching children to catheterize using the Wee Game When a child shows an interest in emptying their bladder you can start to involve them. A fun way to do this is to use the Wee Game – a card-based game that teaches your child the basic steps of catheterization. The Wee Game

Becoming independent

As the child develops, it will want to become more independent. This is a natural part of growing up. The same goes for the child’s toilet habits. When you feel your child is ready, you can start teaching them about going to the toilet and emptying their bladder.


The Wee Game

The Wee Game is a set of cards that you can use to teach your child how to empty their bladder. The cards can be used to play different fun games that can be adapted to suit age and skills. Simply print the cards, cut them out and you’re ready to play.

The Wee Game has been designed to help you and your child learn toilet habits in a fun way. It’s simple to use and as the child gets the hang of it, it’s easy to make it more challenging. Have fun!

The game comes in a girl and a boy version.

 

Download Wee Game playing cards for girls, (pdf, 1MB) - instructions for girls

Download Wee Game playing cards for boys (pdf, 1MB) - instructions for boys

 

iconBefore use, always consult the ‘Instruction For Use’ document delivered with the products. 

 

Remember…

The Wee Games are meant as a training supplement, not to replace actual instructions for use. Consult a doctor or a nurse to get proper guidance or training in how to use the catheter you have chosen and always read the instructions.

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