Imagine sitting in the front row of a university lecture hall early one morning, surrounded by 200 fellow students. Suddenly you feel your stomach contract. You hold your breath and your body freezes. “If you don’t move, then you should be O.K.,” you say to yourself. But the bowling ball in your abdomen keeps moving ahead. The pressure grows and no matter how still you sit, you can’t prevent the inevitable. You panic, as you know that you will most likely pass gas and will pass feces along with the gas. Your throat constricts, your thoughts pound in your head, you grip your desk as you wait for the horror to happen.
For many people with spina bifida this represents a series of events that plays itself out all too often. Fecal incontinence can have devastating effects on one’s ability to live a full and independent life. This article explains it in the context of spina bifida and outlines the latest development to address this highly personal issue.
With spina bifida, nerves protrude through the hole left when the neural tube and vertebrae formed improperly during early fetal development. This damage leads to some level of paralysis below the lesion. Individuals with NTD’s such as spina bifida almost always experience bowel and bladder problems. Because the nerves that control bowel and bladder function are located at the bottom of the spinal cord, even those with lesions very low on the spine can have difficulties with bowel and bladder control.
Incontinence results from the disruption of a complex set of signals between the brain and colon. The anus functions like the starting gates at a thoroughbred horse race, for example. The person in charge of the race sends the message to the “gatekeeper” to open the gate and let the race begin. Similarly, peoples’ brains send messages to the powerful muscle in the anus, called the external anal sphincter, to contract tightly and keep in the solid waste products of our digestive system until they can be expelled at an appropriate time. Because persons with NTD’s have damaged or disconnected nerves, the message from the brain never reaches the anus. Individuals cannot sense accumulated stools in the anal canal, and they cannot contract the sphincter to contain the waste. The gate remains open and anything is free to pass. If the sphincter does not receive the message, the resulting spoil is not an “accident” but a natural yet uncontrollable event.
The unpredictability of fecal incontinence can lead to isolation. Children and adults may become hermits, never leaving their homes, and medical professionals hardly discuss this embarrassing issue. Therefore, children and adults lose, or never build, self-esteem and develop negative attitudes about themselves and their bodies.
Sharon Avey Morrison, a Registered Nurse at the Holland Bloorview Kids Rehabilitation Hospital in Toronto agrees. She explains that many persons with any spinal cord damage may have to endure lives of isolation, insecurity, and dependence on others for personal hygiene.
Several methods have been available for years to help control bowel movements: rectal enemas and suppositories as well as oral laxatives may be used. Often, these methods - with their unpredictable effects - frustrate the individual. What can one do?
The Percutaneous Cecostomy
In the mid 1990s, Drs. Barry Shandling and Peter Chait from the Hospital for Sick Children in Toronto introduced the Cecostomy Tube [C-Tube]. They believed that if individuals were supposed to live “accident free”, then there would have to be nothing in the last part of the colon to “accidentally ” be expelled. The only way to achieve this was to clean out the entire colon.
The colon (large intestine) makes up the last 1.5 meters of the digestive system. The cecum marks the beginning of the large intestine in the lower right part of the abdomen. A valve, called the colic valve, pumps the liquefied digested food from the small intestine into the cecum. From the cecum, the food slowly moves into the beginning of the colon. The colon divides into four parts. Food follows in an arch from the ascending colon in the lower right of the abdomen into the transverse colon right below the diaphragm, then into the descending colon in the left of the abdomen and finally into the sigmoid colon. The sigmoid colon connects to the rectum in the lower left abdomen. Food passes through the sigmoid colon into the rectum and remains there until it can be expelled through the anal canal. In the rectum, the digested food is solid because the body has extracted minerals and excess liquid from the waste, bulking up the feces.
Drs. Chait and Shandling, wanted to find a minimally invasive way to administer an enema right into the beginning of the large intestine, the cecum, so that the colon could be cleaned out. And so, the idea of the Percutaneous C-Tube emerged.
How does the C-tube work?
While the client lies sedated, a radiologist inserts a catheter through a small puncture in the abdominal wall into the cecum, with the aid of X-ray technology. For the first six weeks, the catheter remains in place through a small stitch as the puncture heals. Surgeons also place the stitch into the abdomen to allow the abdominal wall and the cecum wall to grow together and form a healed tract. Through this mature tract, the radiologist inserts a smaller and less invasive tube into the cecum. This second procedure likens to exchanging an earring in a pierced and healed earring hole, except that the client cannot exchange the C-Tube him or herself.
The C-Tube’s two different ends hug the abdominal wall. One end of the C-Tube looks like a piece of Excel gum. This end, called a “trap-door” contains a little flap that seals the hole of the catheter. The flap opens like a door and a special adaptor tube with a metal connector at its end fits into the opening hole of the catheter to administer the enema.
At the other end of the C-Tube, inside the bowel, the catheter coils like a “cork-screw”. The tail prevents the tube from popping out of the cecum.
Most individuals flush out the entire colon through the C-Tube every second to third day. The flushing or irrigation requires little effort and usually takes about one hour. Once the phosphate enema enters the cecum, it stimulates the bowel to contract moving the feces all the way to the anus in one simple step.
What are the benefits of the C-Tube?
Individuals with a C-Tube see the flushing of the entire colon as less invasive than when using rectal enemas. The person can sit on the toilet from the beginning to finish of the flushing. Because the C-Tube’s location on the right side of the abdomen, it more easily accessible than rectal enemas. So far, the Holland Bloorview Kids Rehabilitation Hospital and the Hospital of Sick Children in Toronto have seen great increases in self-esteem of children who have received the C-Tube. “Generally, kids chronically constipated have less appetite and energy,” remarks Avey Morrison. “The tube has secondary benefits for these children as well. I believe that learning at school increases because children can focus their attention away from their bowels.”
The C-Tube also takes pressure away from the bladder, preventing bladder accidents and infections. To date, no other method rivals the sense of independence an individual gains with the C-Tube. Recently, McMaster Chedoke Hospital in Hamilton adopted the procedure for adults, a population that has cried out about incontinence concerns for decades.
But for adults, as well as for most children, getting acquainted with the C-Tube takes time. The mechanisms behind the C-Tube are simple. However, the human bowel does not compare to plumbing. Many individuals spend months training their body to adjust to having a bowel movement at 7 o’clock at night, for example. Also, many individuals need to find the right amount of laxatives so that their feces remains soft enough to help the flushing, but not too soft to cause an accident and diarrhea. Physical and emotional adjustment to the fascinating and unfamiliar device requires patience and continuous problem solving.
After my experience of having accidents during lectures and during the day, I tried to control my accidents by taking laxatives and timing my “accidents” so that they happened at night. I spent my nights in agony because I couldn’t sleep and was constantly cleaning up after myself. Unfortunately, this still didn’t prevent accidents from happening during the day. I saw The C-Tube as the next logical step.
My adjustment to the C-Tube took eight months. I battled with constipation that made the irrigations very painful. Because of my constipation, I spent months searching for different laxatives that were not harsh and didn’t make me feel sick. I also struggled in training my bowel so that I could have a bowel movement only when I was prepared. Within the eight months, I reassessed my diet and paid close attention to which foods caused me to have softer stool and which foods were constipating. Was the struggle worth it? You bet! I could listen to my lecture and take worry free notes. My grades improved dramatically and I felt relaxed and comfortable when interacting with my peers. But I also noticed something else about my quality of life. For the first time I could sit in the kitchen enjoying a morning cup of tea instead of going into the bathroom to clean myself up yet again.
References available upon request.