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.