Taking a Detour

It's a procedure many patients hope to avoid, and it can leave them feeling self-conscious, concerned about upkeep of their bodies and medical appliances, and worried about whether they can still pursue their favorite activities. But it’s quite possible to live a full and active life with a colostomy or ileostomy, experts and patients agree.

CAUSES > When cancer affects the bowel, doctors may need to remove it, requiring them to take out sections of the intestines and connect the remaining pieces. If the bowel does not function properly after the surgery, or if it needs to rest and heal, a surgeon will create an opening in the abdomen called a stoma. The end of the remaining bowel is pulled to the stoma. The surgeon rolls the intestine back on itself, much like the cuff of a shirt, and stitches it to the abdominal wall. A special appliance to collect the stool, usually a plastic bag, is attached and worn outside the body to collect waste.

STOMA PLACEMENT > The type, location and amount of the bowel damage, as well as the patient’s preference, will be factors in deciding which surgery is best for a specific person. Ileostomies connect the ileum, or the bottom segment of the small intestine, to the outside of the body. Colostomies do the same for the colon, or large intestine.

The particular location of a stoma in the lower abdomen should be based, in part, on the patient’s lifestyle, such as sports activities, as well as on body type. It should allow the patient to stand, bend over and twist without interfering with the appliance, and should fit inside clothing comfortably without limiting movement.

It should also be easily visible to patients so they are able to care for it. Another kind of ostomy is a continent ileostomy, or K pouch, in which waste doesn’t leak out into a bag, but instead must be regularly drained by the patient.

INCIDENCE IN PATIENTS WITH COLORECTAL CANCER > Between 5 and 15 percent of patients with colorectal cancer need permanent colostomies; additional patients live with ostomies temporarily after surgery, while their bowels heal, and later have the procedures reversed.

The number of ostomies has dropped over time due to improvements in the treatment of bowel diseases. However, if the colon is perforated or if a tumor is large and advanced, ostomies may be needed. They are also more likely if the cancer is near the rectum, because the small amount of available tissue and the proximity to the pelvis make it harder to reattach the sections.

POTENTIAL COMPLICATIONS > Minor and easily treated complications from ostomies include skin irritation or infection.

A more serious potential issue is hernia. The weakening of the abdominal wall where the end of the bowel is brought through the skin may allow additional parts of the bowel to move into this space, leading to bulging, pain, obstruction or difficulties with appliance fit. In most cases, laparoscopic surgery will be needed to repair the hernia.

Another potential problem is prolapse, which occurs when the bowel is pushed out through the stoma. It may be asymptomatic but can also lead to pain, obstruction or emotional distress if excess bowel hangs out. Typically, surgery is called for to shorten the extended bowel. Although it’s not common, patients with ostomies can also develop problems associated with colon cancer and surgery in general, such as bowel obstruction, and rarely can develop fistulae (openings between the bowel and other structures, such as the bladder or skin).

MANAGING AN OSTOMY > Patients must learn to cut and shape an appliance that goes over the stoma to protect it, and the surrounding skin, from stool. They will learn to choose from an array of available appliances and bags, change the appliance, empty and change the bags, tailor their diets to their new digestive systems, and recognize what the stoma should look like when healthy and when to seek medical attention for problems.

Patients will also learn from experience how best to live with and diminish any odors, noises or new sensations (such as warmth, which at first may be mistaken for a leak) caused by the ostomy.

Those with continent ileostomies, or K pouches, must learn to insert a catheter four to six times a day to drain the waste out of their internal pouch.

MAKING THE ADJUSTMENT > Since most patients are initially opposed to a stoma, many find it is an adjustment—sometimes an emotionally unsettling one—to adapt to the change in their bodies.

Still, for some, an ostomy opens up the opportunity for a greater range of activity. It may remove a painful blockage in the bowel, or end bowel control problems that had previously made it essential to find bathrooms on every outing.

Many who have ostomies are able to run marathons, swim, dance or engage in other exercise, attend social gatherings, work, and have sex.

And the fact that they have ostomies isn’t something they must share with everyone. There is now a wider selection of bags that hug the body, and ostomy appliances have built-in odor and gas controls.

Justin F. Blum, an ostomy patient, told CURE that he was able to remain on duty as a major in the Army after his surgery, meeting rigorous physical requirements and later moving up to the position of lieutenant colonel. In July 2011, Blum was named Army Cadet Command JROTC senior Army instructor for the nation.

“I decided early on that I wasn’t going to let a little bag get in the way,” he says. “It was either I control the ostomy, or the ostomy was going to control me.”