Kurt Ullman

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.

 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.

 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.

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).

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.

 Since most patients are initially opposed to a stoma, many find it is an adjustment—sometimes an emotionally unsettling one&mdash;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.”

Articles

After ostomies, patients must adjust to their new bodies, but can live full, active lives.

Taking a Detour

For just over 21 years, Justin Blum dealt with ulcerative colitis. Finally, a combination of the colitis and colon cancer resulted in surgery and something he had tried to avoid, an ileostomy.

When cancer or other diseases affect the bowel, removing sections of the intestines may be needed. If the bowel no longer functions properly, or needs to rest and heal, an opening in the abdomen called a stoma is made. This allows waste to be removed from the body, usually into a bag.

“Surgeons most often cut away the cancerous part,” says Scott Steele, MD, chief of colorectal surgery at Madigan Army Medical Center in Ft. Lewis, Wash. “When possible, they prefer to reconnect the remaining pieces to keep as much natural function as they can.”

If this isn’t possible, 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 is attached and worn outside the body.

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.

Changes in treatment of bowel diseases have resulted in fewer stomas over time. However, stomas still may be used if the colon is perforated or if the cancer tumor is large and advanced.   Stomas are also more likely if the cancer is near the rectum. Steele notes that the small amount of available tissue and the pelvis make it harder to reattach the sections.

While complications from ostomies can occur, many, such as skin irritation, are minor and are easily treated.

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

Another issue is prolapse, 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.

Keeping a person as active as possible begins before surgery.

“It is important that a wound, ostomy and continence nurse (WOCN) get involved right off the bat,” says Steele. “They meet with the patient before surgery to educate them about life with a stoma. WOCNs also assess where to place the stoma, so it best fits the person’s lifestyle.”

Sheryl Frasier, RN, CWOCN, a department manager of the Wound, Ostomy and Hyperbaric Center at Kalispell Regional Medical Center in Kalispell, Mont.,  has patients bend over, stand up and twist from side to side to see where their natural waist is and to identify contours or creases that may interfere with the appliance.

“We want the appliance to fit inside clothes comfortably and have room to expand without limiting freedom of movement,” she says. In addition, a WOCN identifies a place on the abdomen where patients can see the appliance so they can take care of it.

   [Read "Life After Colorectal Cancer Surgery"]

After surgery, the nurse may inform the patient how to cut and shape an appliance that goes over the stoma. This protects it and surrounding skin from stool. Instruction will also include how to change the appliance, any diet changes, what the stoma should look like, and when to call the nurse or doctor if issues arise.

These nurses also help patients work with insurance companies. “A major issue for patients is how your insurance pays for these expensive items,” Frasier says. “We help connect them with an appliance supplier that their insurance company will work with.”

“Not only do you have a major disease, but you need to adjust to new self-image just like you did in your teens,” Frasier says. “You have to learn to accept and cope with your new body, and emotional changes are a part of that.”

“Most people have preconceived notions about a stoma and don’t want it,” says Steele. “What they don’t realize is that you can do just about anything with a stoma. I have patients who run marathons, work regular jobs and still have sexual intercourse. The bag isn’t an end to their daily lives.”

An ostomy often frees patients to do more. It may remove a painful blockage in the bowel. If they had bowel control problems, they no longer need to know where a bathroom is every minute or worry about having a bowel movement at a bad time.

And for many patients, a stoma is temporary. Over time, the bowel may heal, so it can be reconnected. For others, it will be permanent. In addition, stoma care has improved over the years. Ostomy appliances now have built-in odor and gas controls. There is also a wider selection of bags that hug the body so that one size no longer has to fit all.

“Today, a WOCN can help anyone find the right appliance that meets their needs, so they can lead a full and active life,” Frasier says.

“When I had my surgery, I was a major in the Army,” Blum says. “After recovery, I was able to meet the service’s physical requirements and stayed on active duty. I retired as a lieutenant colonel.”

He was so successful that he was selected the top national Army Junior Reserve Officers' Training Corps instructor in 2003 and again in 2011. A role that required, among other things, that he lead physical training for his group of high school students.

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

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

Advances in ostomy care and maintenance have resulted in more normal lives following colorectal cancer surgery.

Kurt Ullman

Taking a Detour

Improvements in Ostomy Care Lead to Fewer Limitations for Patients

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