This leaflet is for caregivers of children who may require an antegrade continence enema (ACE). It provides information on the ACE in children, including information on the operation itself, alternative treatments and care given before and after surgery. The leaflet also gives advice and information about caring for your child’s ACE at home to supplement the advice given by your doctors and nurse specialists. Please keep this leaflet for reference as it contains information about continuing care and problem-solving at home.
An antegrade continence enema, commonly referred to as an ACE (but also referred to as a MACE), is a method by which the bowel can be emptied to help in the management of constipation and faecal soiling (that is, the leakage of faeces or poo other than during a bowel movement.) An ACE may be recommended when alternative methods fail (see section of alternatives below).
During the surgical formation of an ACE, the appendix (or a small section of the child’s small bowel) is used to form a channel (tube) between part of the child’s large intestine (bowel) called the caecum, and the child’s skin.
Text reads: 'An ACE allows the administration of a bowel washout through a small opening (stoma) on the abdominal (tummy) wall. Your child will sit on a toilet and a specialist catheter is passed in to the stoma. A bag of fluid is connected to the catheter. The fluid flows along the large bowel and empties out bowel contents via the anus in to the toilet. Once the washout fluid has all been given, the catheter is removed. Your child remains sitting on the toilet until no more stool (poo) is being passed (usually 60 minutes but may take longer).
The aim in most cases is for children to be independent in administering their washouts but this takes some time and planning to achieve and depends on the child’s age and mobility.
Constipation and soiling may occur in children for many reasons:
In most cases, constipation and soiling for any of the above reasons can be managed with alternative methods to the ACE (see section on alternatives below). Formation of an ACE is therefore reserved only for children for whom all other methods of treating constipation and soiling have been trialed over many months, with full commitment from the child and family, and yet symptoms have not improved.
Risks, complications and problems may occur at the time of surgery (rare), in the initial weeks after surgery when the indwelling catheter is in place and in the long term (more common).
Complications at the time of, and immediately after, surgery are rare but include:
Complications / problems whilst indwelling ACE catheters are in place are not uncommon and include:
Complications / problems in the longer term:
Alternative therapies for the management of constipation and soiling can be grouped as follows:
The decision to proceed with formation of an ACE is a significant one. Therefore you and your child will meet with a team of experienced specialists. They will assess your child in relation to whether ACE washouts are likely to be helpful in the management of their constipation / soiling and also, importantly, they will assess whether your child is psychologically ready for ACE washouts. It is not uncommon that surgery to form an ACE is delayed to allow the child time to be adequately prepared for their ACE washout regimen. Whilst this may feel frustrating, it is essential that an ACE is not formed until a child is psychologically ready in order to ensure willingness to use the ACE after surgery.
You and your child will meet with specialists including a paediatric surgeon, clinical nurse specialist and play therapist and may also meet a children’s psychologist and / or children’s dietician.
Once a decision is made that ACE washouts are necessary and that your child is adequately prepared for receiving ACE washouts, referral will be made to a local children’s community nurse. Your child’s school will be informed about ACE – this is usually via the community nursing team. Although ACE washouts will not be performed at school or impact on the school day, nonetheless it is important that the school team are aware of what an ACE is and the treatment your child is receiving.
It is important that you purchase some children’s pain killers such as paracetamol (for example Calpol) and ibuprofen before admission to hospital so that you have these available at home after discharge.
If your child has a cold, cough or illness such as chicken pox, the operation will need to be postponed to avoid complications. Please telephone us to discuss this with us (the telephone number is at the end of this leaflet).
You will be asked to complete a health screening questionnaire when your child is added to the waiting list; this will be completed over the telephone.
Blood tests will be required, and these are taken within four weeks of the operation date.
Bowel preparation (commonly referred to as bowel prep) involves the clearing of stool from the colon (large bowel) to prepare it for surgery and reduce risks such as infection and, in the case of ACE surgery, to prepare it for the commencement of ACE washouts. Initial ACE washouts can be painful if the colon is full of stool (poo) so, by emptying it before the operation, children are more likely to have an uneventful first washout which improves their willingness to continue.
Every child that requires bowel prep will have an individualised care plan made for them and you will be given a copy of this before admission to hospital. Bowel prep is likely to involve the following:
You will be asked to bring your child to one of our children’s wards one to two days before the day of surgery to:
You will be asked to sign a consent form. On the day of surgery one parent is welcome to accompany their child when they go to the anaesthetic room to go to sleep for the operation and can also be present in the recovery area when they wake.
The operation is performed under general anaesthesia and, in most cases, can be performed using a laparoscopic (keyhole) technique. The operation takes approximately two to three hours.
Where the appendix is available and of sufficient length, the appendix is used to form the ACE channel. If your child’s appendix has previously been removed or is found to be too short, the surgeon will create the ACE from a section of small bowel.
The surgeon will remove or reposition the appendix (or section of small bowel) from its normal position, whilst maintaining its blood supply. The end of the appendix is opened up to form a channel (tube) with one end attached to the large bowel and the other end connected to the surface of the skin on the child’s lower right side (usually just beneath the level of their waistband).
The opening at skin level is called a stoma. A catheter will be passed into the stoma down the ACE channel and the balloon of the catheter inflated within the bowel. This catheter is referred to as an ‘indwelling catheter’ and it remains in place for four to six weeks whilst the wound heals.
You will be contacted via your mobile phone when your child is waking in the recovery area, so that you can be with them again. After a period of monitoring in the recovery area your child will be taken back to the ward or, if they require closer monitoring due to any underlying condition, to our children’s high dependency unit.
Your child will return from their operation with:
The nursing team will measure your child’s urine output carefully and will need to know the volume of any drinks taken.
Once your child has eaten a normal diet for a full day, an oil (usually Arachis oil unless your child has a peanut allergy) will be administered through your child’s ACE catheter. This is to soften the stool, lubricate the bowel and therefore prevent spasm during the first washout.
You will be taught how to look after your child’s ACE site at home including cleaning, how to perform ACE washouts, problem solving and reasons to call for advice.
The time from admission to discharge is usually seven to ten days in length. This includes the time for bowel preparation, surgery and recovery. One parent can stay over with their child.
At the time of discharge your child’s nurse specialist will arrange a date for your child to be reviewed, have their ACE catheter removed and be taught to perform intermittent catheterisation via their ACE.
The volume of fluid used for an ACE washout is calculated based on your child’s weight and is usually 10 to 20ml per kilogram of your child’s weight. For example, a child weighing 25kgs will require 250 to 500ml of fluid. Research findings inform us that when 0.9% sodium chloride is used as the washout fluid, the least changes are seen in the child’s blood electrolyte (salt) levels and the least side effects are seen.
In adults, tap water is more commonly used as a washout fluid and, in older children (aged over 10 years), short term use of tap water is acceptable for example when travelling on holiday. However, tap water used must also be suitable for drinking.
Sometimes, when washouts become ineffective, it is necessary for a laxative to be added to the washout fluid. Your nurse specialist and doctors will advise if this is necessary and how to administer this. Children who need some types of laxative to be added to their sodium chloride washout fluid require annual blood tests (more frequently if the child has altered kidney function).
Most children start with daily washouts but once they have achieved effective, pain free washouts without soiling, the frequency may be gradually reduced until your child receives their washouts on alternate days.
It is important to perform the ACE washouts at the same time of day for example consistently on waking, or consistently on getting home from school or consistently before bed as this helps the body to get into a routine and so washouts become more effective.
Whether or not your child will still need to take oral laxatives will be assessed over time by your child’s doctor and nurse specialist.
Follow the procedure for your child’s ACE washouts and document carefully the regimen used, time of washout, result and any leakage between washouts. Your nurse specialist will telephone you to discuss progress in these areas and use this information to fine-tune your child’s regimen.
Performing an ACE washout, using 0.9% sodium chloride or tap water, through the indwelling ACE catheter
ACE washouts begin on the day after the oil is administered (see section entitled ‘What will happen after the operation’).
At the time of the first washout a nurse specialist will talk you through the procedure whilst performing most of the practical aspects. On the second day, the nurse specialist will ask your child and you to participate as fully as possible and will offer support as needed. On the third day, the nurse specialist will be present but only intervene where needed. This allows you to gain confidence whilst learning to independently perform the washouts before discharge.
Remember that an ACE washout takes approximately one hour but may take longer.
The following are the steps to follow:
An ACE stopper is a small, plastic plug which has the appearance of a small plastic, blunt ended drawing pin.
An ACE stopper is used to prevent tract stenosis (narrowing) after the indwelling catheter is removed from the ACE tract. After a few months, children are encouraged to wean off using an ACE stopper as their use can result in increased faecal leakage onto the skin. If an ACE stopper is not being used, a catheter must be passed into the ACE tract twice daily to prevent stenosis of the tract (after a period of time some children can pass a catheter once daily only).
For the first week after surgery your child should not bath or shower. After then, while your child is fitted with an indwelling catheter, showers rather than baths are fine. Once the indwelling catheter has been removed your child can shower and bath as normal.
Can my child go swimming?Swimming can recommence once the indwelling catheter has been removed.
Is having an ACE and an ACE washout painful?Before surgery, your child’s anaesthetist will discuss initial pain management plans with you. After surgery, your child’s nurses, surgical team and the children’s pain team will review your child’s pain management regularly to ensure your child is comfortable and able to mobilise again as soon as possible. It is usual for children to receive intravenous painkillers initially and until your child is eating and drinking again. At the time of discharge children usually only require simple pain killers such as paracetamol and ibuprofen.
For many children the ACE washouts provoke new sensations as the fluid moves stool around the bowel. Some children describe this as painful. It is important that the fluid is adequately warmed before administration to help prevent painful bowel spasms and that the fluid is not administered too quickly.
Children and their families often worry that performing intermittent catheterisation will be painful. However, some children (for example those with spina bifida) may not have any sensation and, for those children who do have sensation, whilst they may feel the catheter as cold as it passes into the tract, catheterisation via the ACE is not painful.
Are my child’s activities going to be restricted if they have an ACE?Your child’s activities will be restricted while they have an indwelling catheter during the initial six weeks after surgery. To prevent the accidental dislodgement of the catheter we advise:
Once your child is having intermittent catheterisation via the ACE, there are no restrictions on activities.
Where will my supplies come from?For most patients, continuing supplies of equipment such as catheters and ACE washout equipment can be arranged via a home delivery company. In some areas the GP practices prefer patients to collect equipment from a specific pharmacy rather than receive it on home delivery. Your nurse specialist will inform you what is available in your area.
It is essential that you always have sufficient volumes of equipment at home remembering to:
It is important that all the doctors who take care of your child know that your child has an ACE. You should also tell the school nurse. They need this information to look after your child.
We also advise that you consider use of a medic alert bracelet for your child. A medic alert bracelet lets health care workers know of your child's ACE if there is an emergency.
Will my child always need an ACE?Children who have an ACE formed because of an underlying spinal problem will usually need their ACE lifelong unless they choose to use an alternative method of management (such as transanal irrigation) when they get older.
Children who have an ACE due to other underlying conditions, especially idiopathic or chronic constipation, may be able to wean off ACE washouts over a number of years and then have their ACE tract surgically closed. Surgical closure of an ACE tract is similar to the operation to remove the appendix. Please ask your nurse specialist or doctor if you have questions about this.
Discuss with nurse specialist either:
It is possible to get constipated even if using washouts daily.
If evening washout is missed, administer 1ml per kg of Arachis oil or equivalent (see above) the following morning then continue with evening washout as normal.
Following surgery, it is not uncommon for the stoma to shrink a little (stenosis) resulting in difficulty passing the catheter.
Your child will be re-admitted approximately six weeks after their initial surgery; the date for this will be arranged with you before discharge.
Once your child has commenced intermittent catheterisation via the ACE, they will be reviewed in the outpatient clinic approximately three months later. You will receive a letter in the post giving details of the appointment. Please ensure you telephone the clinic if you are unable to attend.
During your child’s hospital visits your child will need to be examined to help diagnosis and to plan care. Examination may take place before, during and after treatment. It is performed by trained members of staff and will always be explained to you beforehand. A chaperone is a separate member of staff who is present during the examination. The role of the chaperone is to provide practical assistance with the examination and to provide support to the child, family member / carer and to the person examining.
Clinical nurse specialists: 01223 586973 (08:00 to 18:00 Monday to Friday) Ward
Your child’s community children’s nurse
