UROLOGICAL CARE SPINA BIFIDA AND TOILET TRAINING HYDROCEPHALUS AND TOILET TRAINING CONTINENCE ISSUES FOR ADULTS WITH SPINA BIFIDA clean intermittent catheterisation for children clean intermittent self-catheterisation for adults SPINA BIFIDA & URINARY TRACT INFECTIONS BOWEL & BLADDER INVESTIGATIONS AND PROCEDURES MITROFANOFF BLADDER AUGMENTATION aus – artificial urinary sphincter ACE – ANTEGRADE CONTINENCE ENEMA COLOSTOMY, ILEOSTOMY, UROSTOMY AND VESICOSTOMY

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The information on this website does not constitute medical advice for any individual. As specific cases may vary from the general information presented here, SBHI advises readers to consult a qualified medical or other professional on an individual basis.

UROLOGICAL CARE

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The urological care of children and adults with Spina Bifida has undergone several important changes in the last decade. The emphasis is now on early catheterisation of the child's bladder function and preventative infection treatment to preserve both kidney and bladder function.

Newborn Assessment

As soon as the neurosurgical condition is stable, an assessment should be made of the baby’s kidney and bladder function. A renal ultra sound may be used if there is evidence of deterioration or abnormality with either the kidneys or bladder, followed by blood urea nitrogen (BUN) and creatinine testing.

Continence Management - Infancy

Bladder: Assessment of kidney and bladder function is essential. The specialist may be a paediatrician, urologist or clinical nurse specialist. Your child’s bladder function will be tested to ascertain if urine flowing back to the kidneys or if the bladder is not empty completely. This could lead to urinary tract infections and deterioration of the kidneys. Many parents are now taught to do clean intermittent catheterisation (CIC) as a precaution when their child is very young. This ensures regular bladder emptying.

A Vesicostomy is sometimes preferred where the child is thought to be at risk of developing kidney damage. A Vesicostomy is a small opening below the child’s belly button from which the bladder will drain continuously into a nappy. This is usually a temporary measure used only if CIC is not possible.

Bowel: Babies with Spina Bifida can have altered nerve supply to their bowel which will alter their bowel function. The priority is to avoid constipation. In the early days, be aware of your child's bowel pattern. Aim to ensure regular soft stools which can be achieved by giving drinks of cooled, boiled tap water between milk feeds, once or twice daily, (especially in formula fed babies) and to maintain a good level of hydration. When mixed feeding begins, encourage foods with high fibre content, like cereals, prunes and other puréed fruits and vegetables like peas, beans and lentils. It is important to continue to encourage the taking of extra clear fluids. See Dietary Advice

Continence Management – Pre-School Children

These are the important years where the aim is to work towards social continence.

Bladder: Renal tract check-ups should be carried out at least once a year. Remember the importance of fluids such as water and juice (NOT fizzy drinks or caffeine based drinks such as tea). Encourage your child to drink at least 8 glasses of water a day (the aim is to increase fluid intake to 2 litres) and take a water bottle everywhere this will help to reduce the risk of urinary tract infections. Water or juice should be drunk at regular intervals throughout the day – NOT all at once. The last drink at night should be taken two hours before he last CIC, unless otherwise advised by your medical team. Cranberry juice is recognised as being useful in preventing urinary tract infections, in some children. One to two glasses a day is recommended.

Bowels: Encourage a well balanced healthy diet (see Dietary Advice). A high fibre diet will help to keep the motions soft and easier to pass. Avoid eating too much food which can cause constipation, like eggs and full cream milk. Introduce your child to the potty/toilet. Ensure that your child can sit safely and comfortably, supported or unsupported, with his/her feet placed on a firm surface. Regular emptying of the bowels should be encouraged. The best time is after breakfast or other meal times when natural bowel movement is most active. Maintain a high intake of clear fluids.

Continence Management – School Years

For the first time, working towards independent continence management becomes a prime objective. It is also a time when parents may have to involve others in the personal care of their child.

Bladder: As the bladder dynamics may change, it is important to maintain monitoring of the renal tract by your paediatrician, urologist or clinical nurse specialist. This should take place at least once a year. For many children, the need to catheterise during the school day is essential. Any special requirements to enable this to be carried out should be discussed with the appropriate professionals, and need to be written into an educational statement. Facilities should be available for children to carry out their continence management. These may include a larger toileting area with a sink and a lockable door to ensure privacy. The child's needs should be considered when organising residential holidays or day trips. The school should be informed of the need for extra drinks to be taken throughout the day and information of the condition should be made available to the appropriate school personnel.

Bowels: Soiling can be particularly distressing for children in school. It is essential to establish and maintain a good bowel regime to avoid this. Be careful with certain foods (See Dietary Advice). For example, if beans induce a bowel movement, only eat them for this purpose. Otherwise, "accidents" may occur. Other foods may cause constipation - which can interfere with bladder emptying and make urinary continence problems seem worse. Remember those extra fluids!!

Continence Management – Transition to Adulthood

Puberty may bring about changes in bladder and bowel function, and some surgery is best left until after this time. Queries relating to sexual activity will need to be answered and issues should be discussed with the consultant, specialist nurse or SBHI Family Support Worker. Regular reviews of bladder and kidney function often stop during the transition to adult services. However it is essential that investigations continue yearly, as renal function can deteriorate during adulthood. Discuss this with your GP, or contact your Family Support worker who can put you in touch with SBHI’s Continence Advisor if necessary.

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 SBHI Family Support Worker.

SPINA BIFIDA AND TOILET TRAINING

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Every child is different and it is advisable to watch for signs in the child’s development which may suggest he/she is ready to begin potty training, such as: awareness that they are passing urine or having a bowel action, waking from naps with a dry nappy, asking to have their nappy changed.

For children with Spina Bifida, bladder and bowel continence should be addressed at the same time and the way the bladder works should be assessed in infancy in order to protect the kidneys from damage. There are many tests that can be done to check that the urinary system is functioning as well as possible. The tests vary from a simple blood test to more invasive procedures. All tests performed are done with your consent and should be fully explained to you beforehand. You may not necessarily have all the tests and or procedures performed. For more information see the investigations section further down this page. Assessments should be done before starting toilet training and appropriate management should be in place.

Toilet training for a child with Spina Bifida is likely to be quite different from that of other children. Very often, damage to nerve pathways, which coordinate the bladder and bowel function and promote the sensations, mean that control cannot be learnt in the usual way.

Helping to Achieve Urinary Continence And Bowel Control?

The age at which a child begins to work toward urinary continence is individualised based on their physical capabilities and social situation. It is practical to consider urinary continence by the time a child enters school. While this is a realistic goal, it may not be appropriate for all children. In order to gain urinary continence it will be important to adhere to a consistent program. This program may include medications, intermittent catheterization, and possibly operative reconstruction. When a urinary continence program is initiated, it should be continued while the child is in a structured school environment.

It is practical to consider bowel continence at the same time or before a child is working toward urinary continence. It is essential for a child to maintain an appropriate stool consistency which can be achieved by a diet that includes plenty of fluid and fibre. Some children benefit from fibre supplementation. Even when the stool is of normal consistency, some children need to have assistance in eliminating the stool from their rectum and colon.  There are various techniques recommended including digital manipulation, rectal suppositories, enemas and washout therapy.  When enemas are employed, only the very terminal end of the colon is washed free of the stool leaving the bulk of stool in the remainder of the colon.

BLADDER TRAINING

Toilet training should begin at around two years of age. The toilet should be comfortable and not damage pressure areas (the skin on the buttocks and the backs of the legs). A young child with Spina Bifida may have difficulty balancing when sitting. The potty or toilet should provide a stable and secure position, with a comfortable, supportive seat. If necessary, there should be rails or something for the child to hold on to, to give stability to the upper body. The child should be able to place his/her feet flat on the floor or a box/plinth. An occupational therapist should be able to help with equipment if the child has poor sitting balance.

A child who is using clean intermittent catheterisation can also be encouraged to sit on the toilet and pass urine, although it is not always necessary. It is essential to continue with the catheterising regime as well.

Do's and Don'ts for healthy kidneys, bladder and urinary tract

• Encourage the drinking of plenty of liquids, especially water – start with 8 glasses a day - the aim should be 2 litres per day as your child increases in age. This should be taken at regular intervals during the day with fewer intakes in the evening and at night, and not all in one go. Fluid intake is extremely important in reducing UTIs (see Urinary Tract Infections) If this routine and habit is started early it will hold well for adolescents and adult continence management.
• By drinking sufficient water each day, this will keep the system well flushed, especially in hot weather when a lot of fluid is lost through sweat. By not drinking enough water, the urine becomes dark and concentrated and can become a good breeding ground for germs and cause infections.
• Not only will regular fluids keep the system well flushed it also helps with concentration which is extremely important particularly for the school aged child.
• Cranberry juice (one or two glasses per day) can help prevent E. Coli bacteria and can assist with keeping kidneys clean and flushed
• Avoid fizzy drinks and don't drink too much tea, cocoa or cola as caffeine stimulates the bladder muscle.

BOWEL TRAINING

Bowel management and training should start in babyhood to be effective, as hard stools can stretch the colon or bowel over a long period.

The aim of bowel continence training is to achieve a regular bowel motion, to avoid 'accidents' and to be clean, healthy and comfortable.

Training starts with the pre-school child and may take many years and a lot of perseverance, working with the child's continence advisor.

Bowel training depends on developing a habit of opening the bowels as near to the same time each day as possible and clearing a large amount from the bowels each time. Do not allow constipation to develop. Ideally, the faeces should be firm and formed.

Watch for times in the day when the child opens his/her bowels to see if a pattern emerges. The bowel is more active after meals, especially breakfast. Sit the child on the toilet at these times and encourage her/him to push down gently sometimes this can be difficult for very young children so to encourage this push motion you can use blowing bubbles or blowing into a glass of water with a straw. Also the knees of the child should be slightly above the hip bone this can be made easier by the use of a footrest.

To encourage this, try tickling to get the child to laugh or the child could blow a party toy (not balloons and always under supervision) and the effects of gravity will also help. Even if there is no result, continue to sit the child on the toilet after meals. However, the child should not sit on the toilet for longer than 5 minutes.

All programmes will involve sitting on the toilet even when there is no sensation (feeling) of a need for bowel action. If it becomes a normal part of the daily routine from early childhood, it is less likely to become a major issue later on. If this is unsuccessful, it may be necessary to seek advice from your continence adviser. Encourage the child to clean her/himself with tissues and attend to clothing, as far as possible.

Do's and Don'ts for a successful Bowel Program:

Dietary

• Fibre is important in the diet to establish a soft stool and prevent constipation.
• Foods rich in fibre include cereals, whole-wheat bread, potatoes, fruit, vegetables, and pasta.
• Keep dairy content low - milk, cheese, yoghurts.
• Omit sweets, chocolate, crisps, and general junk food.
• Allow one small treat per day, including fruit.

Fluid Intake

• High fluid intake recommended.
• Avoid milk as a thirst quencher.
• Avoid drinks with high sugar content.
• Encourage fruit juices, water

Regular Toilet Habit

• The aim is to establish a regular time for bowel movements to occur.
• To work for accident free days.

Advice for parents

• Pick a time of day which suits both parent and child e.g. after evening meal.
• Sit child on the potty for no longer than 10 to 15 minutes, 5-10 minutes after a meal.
• The child's knees should be higher than the buttocks. Use a footrest if using toilet.
• Teach the child to push by coughing or grunting to ensure abdominal activity.
• Praise the child if successful. If not, try at the same time next day.
• The use of suppositories e.g. glycerine, Microlax may be necessary to establish a routine.

Toilet training has many implications for a child’s development. For children with Spina Bifida, it is important to assess their needs. Then you can start a bowel and bladder control program. It is important to know that no one with Spina Bifida should live with uncontrolled bowel and bladder problems. Good health care and tailored programs can help.

For further advice; contact your Family Support worker who can put you in touch with SBHI’s Continence Advisor if necessary.

HYDROCEPHALUS AND TOILET TRAINING

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Potty training for the non-disabled child usually begins at around the age of 18 months to two years, and the child is usually ‘trained’ by day at around two-and-a-half years.

Every child is different and it is advisable to watch for signs in the child’s development which may suggest he/she is ready to begin potty training, such as: awareness that they are passing urine or having a bowel action; waking from naps with a dry nappy; asking to have their nappy changed.

Start at a time when you can spend a lot of time with your child, when your child seems happy and there are no major distractions or stressful events in his/her life (new brother or sister, divorce, moving, new carer etc).

A young child with Hydrocephalus may have difficulty balancing when sitting. The potty or toilet should provide a stable and secure position, with a comfortable, supportive seat. If necessary, rails (or something for the child to hold on to) will give stability to the upper body. The child should be able to place his/her feet flat on the floor or a box/plinth. An occupational therapist should be able to help with equipment if the child has poor sitting balance.

Many children with Hydrocephalus learn better when there is a routine. Before you begin toilet training, plan what that routine will be and stick to it until a habit is established (e.g. where the potty will be, what time to ‘try’, whether to use pants or ‘pull-ups’). Talk through each step of the routine each time, to reinforce it, being as consistent as you can. Watch the child for times he/she is most likely to have a bowel action, eg after breakfast, and try those times first.

Reinforce good behaviour ie, sitting on the potty, with praise. If nothing happens, say nothing. If it is acceptable to your family, take your child into the toilet when you or family members go, to reinforce what is expected.

It may take much longer than with other children, so be patient. Only stop as the very last resort, as children with Hydrocephalus can become used to wearing nappies through habit and this can be hard to break.

Once a good habit is established, you can gently vary the routine, to allow your child to deal with changes and become more flexible.

Children with Hydrocephalus may have relapses in toilet training when starting school; there is so much going on that the child may not listen to the body’s signals. They may need reminding to go to the toilet and may need showing several times where the toilet is. Classroom staff should be made aware of this.

CONTINENCE ISSUES FOR ADULTS WITH SPINA BIFIDA

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As the Spina Bifida population ages, there will be many people who have never had their continence issues addressed. This leaflet is intended to help this group to look at their bowel and bladder management.

Bowel

Most people with Spina Bifida will have bowel problems. These may include constipation, diarrhoea, and faecal overflow or be 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).

You may like to try a different way of dealing with your bowels:

• Establish a bowel routine. Start a new regime on an empty bowel. Get your GP to check for high up blockages. You may need to have a good “clear-out” before you start a new way of doing things. Regular emptying of the bowels should be encouraged. The best time is after breakfast or other meal times when natural bowel movement is most active.
• Eat a well-balanced healthy diet with plenty of fluid and fibre to help keep your motions soft and easy to pass. If you are unsure what constitutes a “healthy diet” speak to a dietician.
• It is important to exercise daily to the best of your ability as it helps to keep your bowels moving. If you are unsure what exercises you are able to do, ask your physiotherapist, or talk to someone at your local gym.
• Sometimes you will need to use a combination of diet and regular medication - do not worry about your bowel becoming “lazy”. If you need to take medicine then you need to take it. The medication prescribed will depend on what your bowel problem is. Medicines are used to soften your stool, to help your motions pass easily, to clear the bowel out, to stop diarrhoea and to make your stools more bulky.
• You may have always used manual evacuation (using your fingers to remove faeces from the lower bowel). This method is no longer widely taught; it is difficult with this method to remove enough faeces, so can lead to an overloaded bowel. It can also be difficult to get carers or community nurses to carry out manuals if you or your usual carer cannot do it (holidays, illness etc). For that reason it is worth considering another method.
• Gently stroking your anus (bum hole) with your finger can sometimes produce a bowel movement.
• Coughing or blowing your nose or laughing whilst sitting on the toilet may also produce a bowel movement.
• If you cannot manage to regulate your bowels, and still have episodes of soiling, enemas may be the next step. Again, there are various types of enemas available depending on your needs.
• Some people use a system, to completely clear the bowels out every 2-3 days. This is called a high bowel washout. A tube is inserted into your bottom and fluid is washed around the bowel. The tube is removed and the fluid and any faecal matter will exit the bowel.
• When all these methods have been tried without success, surgery may be the only option. Discuss this with your GP and ask him to refer you to a specialist. (See SBHI’s information sheets ACE Procedure’ and ‘Colostomy’)

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 ie giving anti diarrhoea medication, your bowel management will worsen. Also be aware that faecal overflow can be misdiagnosed as Irritable Bowel Syndrome and will need investigating.

It is never too late to change!

Bladder

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. 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 eg as in 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 (preferably yearly) Urodynamics to check bladder and kidney function (see SBHI’s information sheet “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 sheet 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, 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 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.

CLEAN INTERMITTENT CATHETERISATION FOR CHILDREN

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Clean Intermittent Catheterisation is a technique which is used to empty the bladder at regular intervals. This is done by passing a catheter (small tube) into the bladder through the urethra (passage through which urine leaves the bladder). You should be taught how to do this by your continence nurse. It is not a sterile technique, but it is a clean one, so it is very important to have good hygiene standards when doing the procedure.

There are lots of catheters available. If the catheter is “self-lubricated”, it means that after it is soaked in water for a short time it becomes slippery enough to insert. Some catheters are pre-lubricated, which means they have a slippery coating on them. With others, you will need to use a lubricating jelly to ease insertion. Your continence nurse will tell you how to use each type of catheter.

Catheters are available on prescription from your doctor. Some chemists will have to order the catheters for you, so make sure you have enough catheters to last while waiting for your next order to come in.

Tips

Try to avoid constipation because, if the bowel is empty, it makes it easier to drain the bladder properly. A high fibre diet can help. If your child becomes constipated, there may be wetting between catheterisations. Drinking at least 8 glasses of fluid a day helps to avoid constipation and urinary tract infections.

If your family are going to go on holiday abroad, it is advisable to ask your GP if you can have a letter for the Customs Officials stating that you have catheters with you. If you are in doubt about the water in the country you are visiting, it would be best to use bottled water.

Always remember to take enough supplies of catheters with you when going on holiday, either in this country or abroad. Remember to put them in your hand luggage if you are going on an aeroplane, as sometimes suitcases can get mislaid.

Potenital Problems

If your child’s urine becomes cloudy and smelly, they may have a urinary tract infection. Other signs of infection could be generally feeling unwell, headaches, and a raised temperature. Sometimes, if you are wet between catheterisations, this may also indicate an infection. See UTI’s on this page.

If you sometimes see blood in your child’s urine, don’t worry – it could be due to a slight irritation or infection and should clear within a few days. If it doesn’t, seek medical advice.

If you have any problems or questions contact your SBHI Family Support Worker who can put you in touch with our Continence Advisor

CLEAN SELF-INTERMITTENT CATHERISATION FOR ADULTS

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Clean Intermittent Self-Catheterisation is a technique which is used to empty the bladder at regular intervals. This is done by passing a catheter (small tube) into the bladder through the urethra (passage through which urine leaves the bladder). You should be taught how to do this by your continence nurse. It is not a sterile technique, but it is a clean one, so it is very important to have good hygiene standards when doing the procedure.

There are lots of catheters available. If the catheter is “self-lubricated”, it means that after it is soaked in water for a short time it becomes slippery enough to insert. Some catheters are pre-lubricated, which means they have a slippery coating on them. With others, you will need to use a lubricating jelly to ease insertion. Your continence nurse will tell you how to use each type of catheter.

Catheters are available on prescription from your doctor. Some chemists will have to order the catheters for you, so make sure you have enough catheters to last while waiting for your next order to come in. Many healthcare companies offer a home delivery service, whereby you send the prescription to the company and they send the catheters to your home. Ask your SBHI Family Support Worker for details.

Most catheters nowadays are “single use”. However, some people may need to use reusable catheters. A reusable catheter must be rinsed, dried, and stored in a clean paper bag immediately after each use. Change bags and catheter at least once a week.

Your doctor or continence nurse will tell you how many times a day you will need to catheterise yourself. It can vary from once a day for some people to 4-6 times a day for others.

If clean intermittent catheterisation is to be used on a child in school, make sure the school and person responsible for carrying out the catheterisation are properly trained to perform the procedure, and are quite clear about when and where it should be done. Furthermore, a school care plan must be in place. The continence adviser and school nurse will help with this.

Most people find it easiest to catheterise whilst sitting on the toilet.

Procedure

• List of equipment
• Catheter
• Mirror – may be useful for females
• Lubricating/anaesthetic jelly for males if used
• Disposable tissues – or baby wipes
• Unperfumed soap – the perfumed type may cause irritation
• Towel – kept for this purpose only
• Container for urine if not drained directly into the toilet
• Floor protection
• Very careful hygiene should be observed at all times.

Females

Collect everything you are going to need. Take off or loosen clothing as necessary. Gently wash genital area from front to back. Use disposable tissue and soap or baby wipes. Wash hands carefully, and dry them on a towel or disposable kitchen paper.

Part the labia and slide the catheter gently into the urethra, making sure not to handle the end which enters the bladder. The other end of the catheter should be pointing into the toilet or receptacle. When the urine has finished draining, slowly start to pull the catheter back out. If some more urine starts to flow, stop pulling the catheter and wait for the flow to stop. Continue doing this until the catheter is completely out.

Place the used catheter in a disposal bag and/or sanibin. If using a non–disposable catheter rinse it under a tap, dry on a paper towel and place in a clean paper bag for storage.

Males

Collect everything you are going to need. Take off or loosen clothes as necessary. Wash hands and then wash the penis, taking care to wash under the foreskin. Dry hands and penis carefully, using disposable paper.

Squeeze a little lubricating jelly onto a piece of paper and discard. Squeeze a little into the penis if using anaesthetic jelly or on to the tip of the catheter if lubricating jelly is used.

Gently pull back the foreskin and slowly insert the catheter, holding the penis upright. Do not touch the end of the catheter that is going into the bladder.

When the urine has finished draining, slowly start to pull the catheter back out. If some more urine starts to flow, stop pulling the catheter and wait for the flow to stop. Continue doing this until the catheter is completely out.

Place the used catheter in disposal bag and/or sanibin. If using a non–disposable catheter rinse it under the tap, dry on a paper towel and place in a clean paper bag for storage.

Tips

Try to avoid constipation because, if the bowel is empty, it makes it easier to drain the bladder properly. A high fibre diet can help and advice leaflets are available. If you become constipated, you may well begin wetting between catheterisations. Remember to drink at least 8 glasses of fluid a day as this helps to avoid constipation and urinary tract infections.

If you are going to go on holiday abroad, it is advisable to ask your GP if you can have a letter for the Customs Officials stating that you have catheters with you. If you are in doubt about the water in the country you are visiting, it would be best to use bottled water. Always remember to take enough supplies of catheters with you when going on holiday, either in this country or abroad. Remember to put them in your hand luggage if you are going on an aeroplane, as sometimes suitcases can get mislaid.

Potential Problems

Urine infections
If your urine becomes cloudy and smelly, you may have a urinary tract infection. Other signs of infection could be generally feeling unwell, headaches, and a raised temperature. Sometimes, if you are wet between catheterisations, this may also indicate an infection. Take a specimen of urine to your nurse/doctor who may give you some antibiotics to take. Drink plenty of fluid – at least one full glass every hour (preferably not coffee, coke or fizzy drinks). Cranberry juice can help to reduce the risk of urinary tract infections. However, cranberry juice is often contraindicated for people taking blood thinning medications (eg warfarin).

Do not stop catheterising!

Pain on catheterising
You may feel some pain when you first begin catheterising, but this does stop. However, pain can also be a sign of infection. If the pain persists and/or there is blood on the catheter when you take it out, seek medical advice.

Blood in the urine
If you sometimes see blood in your urine, don’t worry – it could be due to a slight irritation or infection and should clear within a few days. If it doesn’t, seek medical advice.

If you have any problems or questions contact your SBHI Family Support Worker who can put you in touch with our Continence Advisor.

SPINA BIFIDA & URINARY TRACT INFECTIONS

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Urinary Tract Infections (UTIs) are quite common in the Spina Bifida population. There are two types of UTIs: the bladder (cystitis) or the kidneys (pyelonephritis). These can present with no symptoms (asymptomatic) or with systems (symptomatic).

Signs of infection to look for are:

• urine looks or smells different e.g. a 'fishy' smell
• wet in between catheterisation when usually dry
• needing to go more often
• burning or stinging sensation
• blood in urine
• temperature, headaches, vomiting

When someone has cystitis, they generally need to pass urine more often than usual and if sensation is present they may have to hurry to the toilet (urgency). The urine looks cloudy instead of clear and may smell different from usual. Drink extra fluids and take your child to your GP or Paediatrician who may prescribe a course of antibiotics. Ensure that laboratory testing is carried out to confirm the presence of a UTI.

A much more serious situation arises in pyelonephritis in which the infection affects the kidneys causing a high temperature, tummy ache, backache, and sickness and may cause scaring to the kidneys.

Why UTIs are Common in Children with Spina Bifida?

Children with Spina Bifida often lack feeling and control of their bladder and bowel in the same way as they may lack feeling and control of their feet and legs. This is because the nerves in the spine connecting the brain to the bladder (or bowel or legs) have been interrupted, or disconnected, by the Spina Bifida. The result is that they cannot usually feel when their bladder is full, nor can they empty it properly. The bladder may still contain urine (the residual urine) after they have tried to empty it. The stagnant pool or residual urine left in the bladder gets smelly and easily becomes infected and over a period of time stones may develop (urinary calculi) as well. Bladder Infections may affect the kidneys causing pyelonephritis and kidney damage, making the child ill. This happens because the bladder does not empty out the infected urine. It may also happen with ureteric reflux when the infected urine travels up towards the kidneys.

Many children with Spina Bifida do not know when they have a urinary infection. Because they lack feeling they do not suffer from the scalding pain which other children feel when they get cystitis, nor do they know their bladder is not emptying properly. UTIs should be confirmed with laboratory testing before treatment is administered. Treating children with antibiotics and extra fluids works more slowly if the bladder is not emptying. The best way to prevent urinary infections damaging the kidneys is to be sure that the bladder empties regularly and completely. One way of doing this is by clean intermittent catheterisation and by being vigilant with a hygiene program and following strict hygiene guidelines. (see “How to prevent UTIs)

How CIC Lessons the Chances of Urinary Infections

Clean Intermittent Catheterisation (CIC) means inserting a narrow tube (catheter) into the urinary passage (urethra) into the bladder. There are different length catheters available suitable for either boys or girls. The urine flows out of the bladder through the catheter into the lavatory, or into a container, until the bladder is completely empty and then the catheter is removed after complete emptying. This should be done 4 – 5 times a day. Regular drainage of the bladder will improve social continence and help to reduce UTIs.

Catheterisation should take place at least four times a day but for those who have a smaller bladder this may need to be increased to six times. With practice catheterisation becomes quite easy and may take less than five minutes. Twenty-five years of experience of intermittent catheterisation has shown that it reduces infections and prevents damage to the kidneys as well as improving those already damaged, if CIC and hygiene regimes are consistent.

How to Prevent UTIs

• Maintain adequate fluid intake by encourage your child to drink at least 4 cups a day and carry a drink bottle with them at all times. (The aim is to increase this fluid intake to 2 litres)
• Ensure regular complete bladder emptying
• Relieve constipation
• Ensure the use of appropriate catheter size and type
• Maintain a strict hygiene routine

Bowels
People with Spina Bifida are often constipated and pressure from an overfull bowel may add to the difficulty of emptying the bladder. They may also have poor control over their bowel in the same way as they have over the bladder. Since most urinary infections are caused by bacteria which normally live in the bowel, it is important to wash this part of the body carefully. Girls should be taught always to wipe from front to back and not from back to front.

Medicines
UTIs should be confirmed with laboratory testing before treatment is administered.

Antibiotics and other medicines are sometimes given in small doses for months or years to prevent urinary infections. They are mainly used for children who have reflux or for anyone with damaged kidneys to protect them from further harm. In spite of this, urinary infections may still break through and need a course of a different treatment.

Other Remedies
Many remedies have been used over the years to prevent or relieve urinary infections and two of these are worth mentioning: Vitamin C (ascorbic acid) and cranberry juice. Vitamin C acts by making the urine acidic and this discourages some of the bacteria which cause urinary infections. Cranberry juice helps to clear infections and debris after operations on the bladder (specifically e. Coli)

Key points

• In children with Spina Bifida urinary tract infections are mainly due to the bladder not emptying properly.
• Poor drainage from the bladder encourages infections to spread to the kidneys where they may cause damage.
• Good drainage is as important as fluid intake.
• Intermittent catheterisation ensures good drainage and protects the kidneys. It may also encourage social continence.

BOWEL & BLADDER INVESTIGATIONS AND PROCEDURES

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Urine Tests (also called urinalysis)

Urine Culture and Sensitivity (laboratory testing) – This is where a sample of urine is taken to see if there are any harmful bacteria (germs) growing in it. The same sample can be used to find out what antibiotics will kill the bacteria (sensitivity).

Blood Tests

Blood consists of plasma in which the blood cells are suspended. The most numerous cells are the red blood cells which help carry oxygen around your body. About a hundredth of the cells are white cells: their main job is to fight infection. Blood is taken for the following tests:

Full Blood Count (FBC)
This measures your haemoglobin (found in your red blood cells) levels to make sure you are not anaemic; the number size and shape of red cells, to make sure they work properly, and the number of your white cells. If there are more white cells than normal, it may be a sign of infection somewhere.

C-Reactive Protein
The level in the blood rises if there is an infection, and drops again when the infection passes. CRP can be high for other reasons, such as just after an operation.

Erythrocyte Sedimentation Rate (ESR)
This is another test that can be used to look for infection. It measures the rate at which red cells settle out of suspension in blood plasma. If they settle more quickly than “normal”, infection may be present, though as with CRP it can be raised for other reasons.

Urea and Electrolytes (U and E)
Urea is the main end product of protein breakdown and is excreted by the kidneys. Urea rises if renal function is impaired. Electrolytes are a common name for the body’s salt, such as sodium. If you are dehydrated, the sodium and urea may be raised.

Imaging Tests

Urodynamics
Urodynamics means the study of the pressure and flow of urine in the lower renal tract, (the bladder, and the tube through which you pass urine, called the urethra). A Urodynamics study helps to determine if current treatment is working, or if changes need to be made. The objective of a Urodynamics study is to reproduce complaints or symptoms. Video Urodynamics may provide additional information that helps to further understand the problem.

Urodynamics is used to answer three questions:

• At what pressure does the bladder store urine?
• Are there any abnormal dynamics such as over-activity or poor bladder compliance which can damage the kidneys?
• How does the bladder empty?

Urodynamics are classified in two different categories: non-invasive and invasive, and the procedure often varies among hospitals.

Prior to starting Urodynamics, a detailed interview must be done by the healthcare team. The interview is important because it gives vital information about medical history, home and school and the child’s willingness to understand and cooperate with treatments.

Non-invasive or simple Urodynamics
This test is done to evaluate urine flow and usually with a full bladder. The child will be asked to pass urine into a machine that looks like a toilet which can measure the rate at which the urine flows and the amount passed. At least two free voids (wees) are necessary to understand the flow pattern. Also, some hospitals stick patches on the outer thighs and buttocks to measure muscle contractions while urination takes place.

Afterwards an ultrasound image of the bladder will be performed. An ultrasound is a diagnostic test that uses sound waves to get an image of the bladder. It is used to measure the amount of urine remaining in the bladder. An ultrasound is done by gently moving an instrument (which looks like a microphone) over the lower tummy, which will be coated with a cool gel.

This appointment usually takes about half an hour, and when children are undergoing the procedure, parents usually stay in the room. No catheters are required for this procedure. Based on the results of the non-invasive study, the urologist will either be able to identify the treatment you require, or will need to perform invasive urodynamics in order to get additional information that is only available from more detailed assessment.

Invasive Urodynamics
This test requires the insertion of a catheter (into the bladder), in the urethra or if urethral sensation is present the suprapubic region. A suprapubic catheter is normally inserted under anaesthesia 24 hours before the urodynamics study is done. The catheter is used to fill and empty the bladder, and also to measure pressure in the bladder and urethra.

Another catheter is passed into your rectum (back passage); this measures abdominal pressure. When the test is finished the catheters are removed. The whole test takes between 1 hour and 1½ hour.

Since invasive urodynamics can cause anxiety, it is important to have a qualified and cohesive team of professionals. They will show you the testing environment before the assessment is done, answer any questions, and give detailed information about the test and what you can expect.

Bladder Scan
This measures the bladder volume, and can indicate whether the bladder is large or small. It is a non-invasive procedure which uses ultrasound waves. Gel is put on to your tummy and a small smooth instrument is pressed over the skin.

Cystogram
This is an x-ray examination where dye is put in the bladder through a catheter. This can be done to detect reflux (backward flow) of urine from the bladder up the ureters to the kidneys and urethral outline.

Special Considerations
Some signs may help adults learn children’s potential for bladder control. Those with the best chance for bladder control produce a good urine stream, are dry between urinating and have an urge to void. The chance for bladder control is much lower for those that leak urine constantly, never have a good urine stream or do not have an urge to void. There is no harm in toilet training any child as long as parents remain upbeat and realistic.

Toilet training for the bladder is the same as “normal” training except for intensity and age. Putting children on the toilet first thing in the morning and then every two hours during the day may increase dryness. Also, practicing “pottying” is helpful. This includes removing clothes, sitting on the seat, getting dressed, flushing and washing hands. Rewards can help with cooperation, voiding in the toilet and having accident-free days.

Clean Intermittent Catheterisation (CIC)
If timed toileting does not lead to dryness, CIC and drugs are needed. CIC involves inserting a small plastic tube into the bladder to drain urine. It is usually done every three to four hours. If a child is not dry between drainings, drugs may help with dryness. CIC and drugs do not lessen a child’s given ability for bladder control. Rather, CIC empties the bladder at intervals while drugs relax the bladder and/or increase the tightness of the sphincter. If using CIC with drugs does not result in dryness, surgery may be needed when the child is physically and emotionally ready.

For further information and support contact your SBHI Family Support Worker who can put you in touch with SBHI’s Continence Advisor if necessary.

MITROFANOFF

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This operation was designed to help people who are incontinent of urine or cannot empty their bladder completely via their urethra. Your surgeon will explain the details of the procedure, how it works and what will happen after the operation, both in the short and long term.

To create a Mitrofanoff stoma, the surgeon will take your appendix and connect one end to your bladder and the other end to the wall of your abdomen (tummy), either into the navel or lower down below the level of most underwear. This small opening (stoma) is used to pass a tube called a catheter, along the new channel into the bladder so it can be emptied. If you have already had your appendix removed, don’t worry. There are other ways of making a Mitrofanoff channel. One way is by using a tiny segment of small bowel. Some people also have their bladder enlarged at the same time as having the Mitrofanoff. (See separate information sheet on Bladder Augmentation).

You may be admitted to hospital a few days before surgery. This is to make sure you are well enough to have the operation. Also, sometimes it is necessary to empty the bowel and make sure it is clean before the procedure is started. A clean, empty bowel is especially important if you are having your bladder enlarged. This helps to prevent infections after the surgery. The bowel is usually cleaned by temporarily changing your diet to clear fluid drinks only (for one or two days) and by taking medicine that empties the bowel.

Although you will not be able to eat and drink immediately after surgery, you should be up and around and eating and drinking as usual after about 2 - 3 days. Your stay in hospital will usually be about 3-5 days. After the operation and when you go home, a catheter will stay in the stoma for up to six weeks, to drain urine from the bladder. You will then be asked to come back to the hospital and will be taught how to catheterise the bladder through your stoma. Many people will already know the basic principle because they have been using a catheter to empty urine through the urethra (the tube through which urine leaves the body) for some time.

The nurse or doctor will help you do your first catheterisation. Sometimes a washout is done at the same time. This just clears your bladder of any ‘debris’ which can cause problems by blocking the catheter. You can reduce the amount of this ‘debris’ by drinking a glass of cranberry juice every day. If you are on blood thinning medicines you should not take cranberry. If you are unsure seek medical opinion. Urinary tract infections sometimes occur following this type of operation (especially if you are not careful about keeping to a clean catheterisation routine), but cranberry juice is known to reduce the risk of these occurring.

Catheterisation via Mitrofanoff is not a sterile procedure, but is a clean one. This is how it should be performed. Make sure you have everything you need before you start.

• A clean or new catheter each time you catheterise.
• Somewhere to wash/clean your hands
• A toilet or container to collect the urine

Wash your hands and prepare your catheter. Gently introduce the catheter into your stoma, making sure you go far enough in to drain the urine. When the urine has stopped draining, advance the catheter about a centimeter further to ensure your bladder is completely empty. Then slowly remove the catheter, twisting it as you do so and throw it away. Some catheters can be rinsed and stored in a clean container, depending on the type of catheter that you have chosen to use. Wash your hands again.

As with any surgery, sometimes problems do occur. The stoma can occasionally become narrowed (stenosed). If it becomes difficult for you to catheterise your stoma, this could be the reason. If this happens it is important for you to contact your doctor or specialist nurse immediately. At this stage, if a problem is developing, it is fairly easy to correct. This usually means either leaving a catheter in for a few days or stretching the stoma, under a short general anaesthetic, (not as bad as you think!). Do not wait until you cannot pass the catheter at all, as this can often be too late and will need more major surgery to fix. Apart from problems with stenosis of the stoma, difficulties in completely emptying the bladder, and urine infections can occur.

You should also let your doctor or nurse know if you have any of the following:

• Blood in the urine.
• Smelly urine.
• A temperature causing you to shiver or sweat.
• Difficulty draining any urine.
• Urine leaking from your urethra or stoma, which hasn’t happened before.

Never leave catheterisation for longer than four hours during the day. Your bladder may overfill and there is a real risk that it could burst if you have also had surgery to your bladder neck.

If you have any problems or questions concerning your Mitrofanoff, you should ask your doctor or contact your SBHI Family Support worker who can put you in touch with SBHI’s Continence Advisor if necessary.

BLADDER AUGMENTATION

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You may have had bladder augmentation mentioned to you by your urologist as an option for managing your continence. You may be offered this operation because you need to pass urine very often, or feel an urgent need to pass urine. You may have recurrent infections, and your urologist may be concerned about your kidney function. The operation is offered after other, less invasive treatments haven’t worked.

The nerves which supply the bladder and bowel come from the sacrum. As this is usually below the level of the Spina Bifida lesion, most people with Spina Bifida will have bladder and bowel problems (Neuropathic bladder/bowel).

For some people, especially those with lumbarsacral lesions, the abnormality in the nerves to the bladder may cause it to contract and twitch before it has been filled with much urine, and the urine will be stored at pressures too high to be safe. It will result in frequency of passing urine, and feelings of needing to pass urine urgently.

Furthermore the contractions of the bladder may also not coordinate with the sphincter (the muscles around the bladder neck which keep the urine in the bladder, and open to let it pass out of the bladder). If the bladder muscle contracts against a closed sphincter, the urine in the bladder may be forced back up the ureters (tubes which drain the urine from the kidneys to the bladder) towards the kidneys, causing pressure damage to the kidneys. The bladder may also not empty fully if the emptying is uncoordinated; this will lead to recurrent urine infections, or bladder stone formation, putting the kidneys at greater risk.

An operation, bladder augmentation, has been used for a number of years now to improve the situation for people with this type of bladder problem (hyperreflexic bladder). By adding a piece of clean small intestine, the bladder capacity can be increased and the tightness of the bladder muscle can be reduced.

A bladder augmentation operation is major surgery with a hospital stay of around 10 days. The recovery period is long too; expect not to feel fully well for around three months. During the operation, your surgeon will make a cut along the top of your bladder, to form an opening like a clam shell (it is referred to as a clam cystoplasty). Into this space, a length of your small bowel, which has been cleaned, will be sewn to form a large patch, so the bladder will be larger and able to hold more urine. The contractions of this altered bladder will also be reduced, so the high pressures within the bladder, which can harm the kidneys, will be prevented.

After this surgery you will need to self-catheterise, even if you didn’t need to before, as the bladder will now not be able to contract strongly enough to empty. You may find a Mitrofanoff (a tube opening the bladder on to the abdomen which you catheterise) better; if you have had problems catheterising in the past, because it is too uncomfortable, or you can’t reach easily, talk to your surgeon before your augmentation. Your surgeon may tighten up the bladder neck to prevent leaking if you have a Mitrofanoff as well. This will mean you need to remember to catheterise yourself regularly; if you are worried about forgetting to do this, talk to your surgeon before the surgery. Talk to your SBHI Family Support Worker who can put you in touch with our continence advisor as there are aids such as vibrating wristwatches which can help.

Other complications

You may find that your augmented bladder produces some mucus; this can be improved by bladder washouts – your urology team will guide you through this.

There is a known but small risk of developing cancer in the bladder after this operation. It will be important for you to have check cystoscopies (telescopic examination of your bladder) at some stage to make sure everything is alright.

Remember, bladder augmentation is major surgery – expect a hospital stay of 7-10 days. The recovery period is long too; expect not to feel fully well for around three months. As with all major operations, make sure you understand what’s involved and whether this is the right surgery for you – your surgeon, SBHI Family Support Worker who can put you in touch with our continence advisor, are all there to help.

AUS – ARTIFICIAL URINARY SPINCTER

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What is it?

The artificial urinary sphincter (AUS) is a surgically implanted device for controlling urinary incontinence which has been in use since 1972.

Usually, when the bladder is full, the urge to urinate is felt because a message goes from the brain, through the network of nerves in our back (spinal cord), to the natural sphincter (muscle that keeps the urethra closed). When it receives the message, the sphincter relaxes and allows the bladder to empty. Afterwards, it tightens again, squeezing the urethra (the opening which allows urine to leave the body) to keep urine from leaking out of the bladder. Sometimes the “messages” aren’t able to get from the brain to the natural sphincter. This often happens because the nerve supply (communication network) is damaged, as in Spina Bifida. The bladder is then considered to be “neuropathic” and must be managed.

If the bladder is difficult to manage and urine continues to leak, the urologist may decide that an AUS is necessary. An AUS is fitted either to strengthen a small part of the urethra, or to squeeze a small part of the bladder neck (bulbar urethra). The device is made from silicone elastomer - a synthetic (non-latex) rubber so the body isn’t likely to become sensitive to, or reject the material. It has three main parts: a cuff, a pump and a balloon. All three parts are connected by silicone tubing.

How is it fitted?

The AUS is surgically implanted through an incision (cut) in the lower abdomen. In males, an additional incision is made just behind the scrotum on either the left or right side. The AUS is hidden inside the body with the balloon in the abdomen and the pump in either the left or right scrotal sac in males, or the labia in females. The cuff, which holds a small amount of water, is inflated and then gently wrapped around the urethra.

How does it work?

The inflated cuff applies gentle pressure to the urethra, helps to hold the urine in the bladder, and thereby improves continence. The pump has a soft curved end which can easily (and gently) be pressed to shift the water from the cuff to the balloon. When it is time to urinate (wee), the pump is pressed, and the pressure is released, relaxing the sphincter so the urine is free to be drained. The bladder can then be emptied by whatever means is normally used, for example clean intermittent catheterization (CIC - see leaflet). After a few minutes the fluid returns to the cuff, and the pump returns to its original shape. The bladder once again becomes continent.

When can it be used?

For the first month after surgery, the AUS is left deactivated, or switched “off” to allow the body to adjust to having the implant, and to allow swelling to settle. Within four to six weeks after surgery, the doctor or nurse specialist will activate or switch “on” the AUS and explain how to use it.

As with all surgery, very occasionally things do go wrong. Sometimes the cuff does not provide sufficient pressure on the urethra to stop urine from leaking out of the bladder and the cuff needs to be replaced with one that gives a higher pressure range.

Infection, pump failure and erosion may also occur in some people, in which case, the system would have to be replaced. Ejaculation may be a problem, but this can be overcome by changing the position of the cuff.

Who is it for?

Although the artificial urinary sphincter is a very effective way of maintaining continence when the sphincter is weak, it is used only when other methods fail or the urologist decides they are inappropriate.

Insertion of an artificial sphincter is an expensive operation, but if the cost of providing incontinence pads and protective bed pads, etc for a lifetime are taken into account, then this alternative method proves to be more cost effective in the long run.

Candidates for this type of surgery need to be carefully selected though because four-hourly emptying of the bladder is essential. Furthermore, the AUS is generally not advisable for boys before puberty, due to physical changes.

ACE – ANTEGRADE CONTINENCE ENEMA

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Many people who have Spina Bifida will suffer with problems of constipation and faecal incontinence. The Antegrade Continence Enema or ACE is a way of managing bowel emptying at a convenient time each day, and should reduce both constipation and soiling episodes.

The procedure involves sitting on a commode or toilet whilst a washout is given through a small opening or stoma on the abdomen. Because creating an ACE stoma requires an operation, the doctor will usually recommend it only when all other efforts to manage the bowel have been tried and have failed.

How does it work?

To create an ACE stoma, the surgeon will cut off the appendix, still with its blood supply, and connect one end to the large bowel and the other end to the wall of the abdomen at the navel or lower down below the level of most underwear. This small opening or stoma is used to pass a tube called a catheter into the bowel so that fluid can be introduced to flush faeces out through the anus. This is called an ACE washout. For people who have previously had their appendix removed, there are other ways of making an ACE stoma. For example, a tiny segment of small bowel may be used.

Before the operation, you may be admitted to the hospital for a few days. This is to make sure you are well enough to have the operation, and to empty the bowel. Although you will not be able to eat and drink immediately after surgery, you should be up and on a normal diet after 1 or 2 days. This is when the washouts will begin. A soft catheter that is left in the stoma from surgery will be used. A solution is flushed along the bowel by gravity whilst you sit on the toilet. The solution and contents will empty into the toilet. The hospital stay will last 5 to 7 days. After discharge from the hospital, the catheter will stay in the stoma for 4 to 6 weeks, to allow it to heal. You will then be asked to come back to the hospital, and will be taught to catheterise the stoma so you can do your washout and then be free of a catheter until the next washout. Once the catheter has been removed, there is no leakage from the stoma as it is designed to be leak-proof.

Who is it for?

This method of bowel management is not a “quick fix”, and requires a great deal of commitment and hard work to establish a reliable washout routine. Once a good routine is achieved, it will work only if it is carried out regularly. Initially, this may need to be daily and the whole process may take as little as 30 minutes, or as long as 2 hours. The average time though is an hour. Once you establish a good routine, you should be clean between washouts. Remember that it takes a little while for the system to settle down, and the amount and/or type of washout fluid may need to be changed. Your nurse specialist will help with this. For some people, things seem to work out quickly and they soon become accustomed to doing the washouts.

What complications can occur?

There can be times when things do not go well, for instance if you have to take antibiotics, or you get a tummy upset. There are ways of overcoming these problems and with experience you will learn how to cope with them.

For a few people, complications do occur. Sometimes the stoma becomes narrow (stenosed) and it is increasingly difficult to pass a catheter. This can be overcome by passing a catheter every day even if the washouts are not done daily. Sometimes it is necessary to have further surgery to solve these difficulties. Some people choose to wear a small soft plug or stopper in the stoma to prevent it from getting tight. Occasionally infections occur, and they may need to be treated with antibiotics.

Before choosing this method of continence management, you should consider whether you could give the time commitment, and have the motivation it takes to make it work for you. Generally, ACE is not considered suitable for children under the age of 5 years, as it can be very difficult to encourage them to sit on the toilet for the length of time required.

Talk to your doctor or continence adviser and decide together if this is the way forward for you. Most people who have chosen the ACE procedure have gained immensely from it. They can do things they thought were impossible before, such as swimming and even having sleepovers!

Are there other options?

Some hospitals now offer a variation of this procedure that does not require a formal stoma to be created. However, some form of small tube called a PEG or Button device is left in place at all times. The tube is inserted under general anaesthetic either using a laparoscope or a colonoscope. This is a “pull through” method whereby a piece of the bowel is pulled to the surface of the skin, and the button or PEG tube is inserted. Once this has healed, washouts can be given whilst sitting over the toilet. The washouts work in the same way. The big advantage of this procedure is that it is easy to stop just by removing the tube. For some patients, the tube can be placed into the left hand side of the bowel. This usually means shorter washout times. This option will not be suitable for everyone however, so it must be discussed with your medical team.

COLOSTOMY, ILEOSTOMY, UROSTOMY AND VESICOSTOMY

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This information is an introduction to having an ostomy, and should be used as a brief guide to having a stoma, or ostomy.

“Stoma” simply means opening. A stoma allows access to the bowel or bladder via an opening on to the abdomen. The contents of the bladder (wee) or bowel (poo) then empty into a special bag that sticks on to the abdomen (tummy), and fits around the stoma. This is emptied or changed regularly as necessary. A stoma is one way of managing continence, but usually other methods would be tried first. Stomas may be temporary or permanent.

Colostomy

A colostomy is where a small part of the colon, or large bowel has been surgically diverted onto the surface of the abdomen. The waste passed is usually fairly solid. This is the usual type of bowel stoma seen in neuropathic conditions such as Spina Bifida. A neuropathic bowel is one where the messages sent from the brain to the anal sphincter are not received because the network of nerves (the spinal cord) is damaged. This can be a very good method for people to manage their bowels independently. Particularly if care issues pose a challenge.

Ileostomy

An ileostomy is where a small part of the ileum, or small bowel has been diverted on to the surface of the abdomen. An ileostomy will work more regularly and the waste will be more fluid. This type of stoma is less common in neuropathic conditions such as Spina Bifida.

Urostomy

A urostomy is where the ureters, the two small tubes that drain urine from the kidneys to the bladder, are diverted onto the surface of the abdomen. These tubes are so tiny that they have to be transplanted into a small piece of bowel which forms the stoma. The urine drains continuously into a special bag (appliance) which is then emptied regularly.

Vesicostomy

A vesicostomy is where the bladder is diverted through a small opening directly onto the surface of the abdomen. This operation is only carried out in babies where the kidneys are under pressure and at risk of damage. A bag is not necessary because the urine drains straight into the nappy. This is always a temporary stoma.

Preparation for Surgery

People undergoing surgery to form a stoma will need some preparation before the operation. This will depend on the type of surgery and the consultant carrying out the operation.

You should expect to be able to discuss the surgery fully beforehand and ask any questions you may have. You should be introduced to your specialist nurse who will be supporting you and will explain what will happen during the hospital stay. This nurse will teach you how to look after your stoma before you go home, and will make sure you know who to contact if you need help or advice after you go home.

After Surgery

Some food and drinks may cause excess wind or looser motions. You may need to experiment and find out what affects you. It is best to eat a normal diet if possible. If you have an Ileostomy, some foods can cause a blockage if you don’t chew them well. You may need to avoid pulses, dried fruit, nuts, coconut, and popcorn. Some foods like tomato skins and pips may pass into the bag unaltered. You can ask your stoma nurse for a diet advice sheet.

If you had a Urostomy, you must make sure that you drink enough liquid. Drinking cranberry juice is helpful in preventing infections. However, it is not recommended if you take blood thinning medications such as warfarin or coumadin. Some foods like beetroot may colour your urine, but won’t cause any harm.

Looking after the Stoma

Whilst you are in hospital, the nurses will teach you to look after your stoma. They will teach you how to empty and change the stoma bag and how to care for the skin around the stoma. There are many different stoma bags, and your stoma nurse will help you to find the one that is best for you. Your nurse will also explain how to store your stoma bags at home, and how to dispose of them.

You will be given some bags to take home, and after that, further supplies are available on prescription. You can then get the products from your local chemist; or you can use a home delivery service if you find it more convenient. This service won’t cost you anything. You won’t have to pay prescription charges for stoma products, but if you are over 16 years old, or under 60 years old, you will need to apply for a Prescription Exemption Certificate. You can get a form to apply for this from your doctor or chemist.

If you have a stoma or are considering surgery, contact your SBHI Family Support Worker who may be able to put you in touch with other people who have had a stoma operation, they may be a useful source of information, advice, and support.

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