For the Caregiver: Life after Colorectal Cancer Surgery

Most patients with colorectal cancer undergo surgery to remove tumor tissue from the colon or rectum. But this lifesaving procedure can come with unwelcome side effects.

Most patients experience changes in normal bowel functions, including increased stool frequency, flatus (gas), cramping, urgency, and decreased continence. These problems are emotionally and physically taxing for both the patient and the caregiver.

Helping the patient cope with these issues often means lifestyle changes for the caregiver as well. Dining out, for example, may not be possible in the weeks and months after surgery as the patient adapts to bowel changes and the dietary limitations that go along with them. Travel may also be difficult for patients who are unable to stray far from a restroom.

“The caregiver can really help by being accepting and understanding that it’s going to take some time for things to get back to normal,” says Kate Murphy, director of research communication at the Colorectal Cancer Coalition and herself a 25-year colorectal cancer survivor.

Besides offering an extra dose of patience, caregivers can also play an active role in the recovery process. Helping the patient maintain a food diary, for example, is a good way to keep track of which foods are tolerable and which make symptoms worse. “It can be very discouraging for patients to try to figure out what to eat and how to manage a bowel that doesn’t always work the way that they expect it to,” Murphy says. “Really looking at what you’re eating and keeping track of it is important.”

For most colorectal cancer patients, bowel function eventually returns to normal, allowing both patient and caregiver to resume their usual activities. But for a small percentage of patients, surgery results in a colostomy or ileostomy, in which the upper end of the bowel or intestine is brought outside the abdomen and connected to a collection bag.

“Dealing with an ostomy takes time,” says Murphy, who had an ileostomy last year. The caregiver can help ease the transition by providing both practical and emotional support. Murphy stresses the importance of finding a good ostomy nurse, who can educate both patient and caregiver in how to properly care for the appliance.

Although they are usually focused on the needs of the patient, Murphy recommends caregivers reach out to others in the same situation through support groups and nonprofits to share frustrations and anxieties.