The MACE and Cecostomy procedures are surgical solutions for bowel management. In a nutshell, the surgeon fashions a channel from the start of the colon to the outside of the abdomen so the patient can insert a catheter into the channel and flush fluids through it. Most teens and adults can administer these bowel flushes independently, and they can provide a better clean out of the colon compared to rectal enemas since the fluid flushes through the entire length of the bowel instead of just the descending colon. Below are descriptions of each procedure and comparisons.
For a Cecostomy, the surgeon inserts an artificial tube from the skin of the abdomen through to the cecum, which is the entrance to the large intestine. A couple weeks after the procedure, the surgeon places either a Chait Trapdoor or MIC-KEY button, which needs to be changed about twice a year.
MACE is an acronym for Malone Antegrade Continence Enema, which was named after Dr. Patrick Malone who popularized the procedure in the 1990’s. Some people also refer to the procedure as the ACE or the Malone. Instead of using an artificial tube, the surgeon creates a channel using the appendix or ileum (portion of small intestine) from the very beginning of the colon to an artificial opening called a stoma somewhere on the belly. Stomas rarely leak and are usually aesthetically unobtrusive.
About 30% of MACE patients experience stomal stenosis, which means the stoma restricts so the patient cannot pass a catheter through. In some cases, this can be solved by leaving a catheter or stent in the stoma for a prolonged period of time. If a catheter cannot pass through at all, it may require surgical revision. If the patient has recurring stomal stenosis, the surgeon may recommend inserting a MIC-KEY button or Chait Trapdoor in the MACE.
Above in the left photo, you can see a small child’s stoma placed in his belly button. Other times, surgeons place the stoma in the bottom right of the abdomen. The middle photo shows an adult’s MIC-KEY button. A chait trapdoor, pictured right, is smaller than the MIC-KEY.
Should we choose the Cecostomy or Mace?
It’s really an individual decision with your doctor. Some choose the Cecostomy because it can be a simpler surgery than the MACE, it’s reversible, and there’s no risk of stomal stenosis as with the MACE. Or they may choose the Cecostomy so they do not have to use the appendix–if the patient’s appendix has already been removed or used for a Mitrofanoff, or if the surgeon wants to save the appendix for a later Mitrofanoff. The downsides of having a Cecostomy are that having a MIC-KEY or Chait Trapdoor is more outwardly visible than a stoma, and the tube must be replaced about twice a year, with or without sedation.
Others choose the MACE because it is visually less noticeable on the belly, and there’s no tube to be changed. Often a surgeon can use the appendix for both the MACE and Mitrofanoff, so the surgeries are regularly done at the same time. The MACE can be a more invasive surgery than the Cecostomy, but it can sometimes be done laparoscopically–a much simpler procedure and easier recovery. The main drawback is for those who experience stomal stenosis.
What is the right age do do the MACE or Cecostomy?
Again, it’s an individual decision with your doctor. Many parents choose surgical intervention for bladder and bowel in the upper elementary years. By then, parents know more about their child’s bowel and bladder, the kids are able to have (limited) input, and young people usually adapt better to changes in routine.
Increasingly younger children (such as preschoolers) are having these surgeries to avoid incontinence in school, especially if the parents already know what bowel and bladder surgeries will be needed or if they don’t have good local support for doing rectal enemas first. One good reason to wait is if you don’t yet know what bladder surgery will be needed, if any. The appendix is usually the easiest material to use for both the MACE and Mitrofanoff, and surgeons like to try to use it for both procedures at once.
Bowel and bladder surgeries are often the most effective options for bowel management for teens and adults because they can be done independently. And parents often say they want to wait to do the surgeries until their children can make decisions about their own bodies. However, teenagers can be resistant to the idea of an elective procedure and to changing their routine, and the recovery can be more difficult for adults. Adults with Spina Bifida have a more difficult time finding doctors who are familiar with the surgeries. However, both procedures are absolutely options for teens and adults looking for bowel solutions.
Next: Bladder Surgeries