According to a recent assessment of bowel dysfunction–related needs, the hardships for colorectal cancer (CRC) survivors continue long after leaving the operating room, and survivors desire more information and strategies to help cope with unexpected changes to their bowel patterns, researchers said at the 2015 Gastrointestinal Cancers Symposium held in San Francisco, CA.
“Many colorectal cancer survivors struggle with unpredictable bowel function continually for the rest of their lives” said Virginia Sun, RN, PhD, Division of Nursing Research and Education, Department of Population Sciences at City of Hope, Duarte, CA. “And many never find any set of management strategies” to help them with this situation.
The study included 37 CRC survivors who were within 1 to 3 months after sphincter-preserving surgery or anastomosis to complete questionnaires on bowel function, fecal incontinence, and bowel dysfunction needs. To further explore unmet needs, the study randomly selected 6 of these participants for personal interviews. The sample was taken from a single National Cancer Institute–designated comprehensive cancer center.
According to Dr Sun, the mean number of daily bowel movements reported was 5.5 (range 2-10), and many survivors reported problems with incomplete fecal evacuation and the ability to control gas.
“I was pretty much restricted to the home area…for almost a month after the operation,” shared one of the survivors interviewed for this assessment. “You are always thinking about it, at work especially,” said another survivor. “I am always on guard or on edge because of that.”
Given the severity of complications detailed, it should come as no surprise that lower quality-of-life scores were observed for the impact of fecal incontinence on lifestyle and coping behavior. Yet, many survivors reported feeling uninformed and unprepared to face these common changes.
“I think it would have been better if they just came out and said, ‘hey, the reality is…you’re going to have an accident,’” said one of the patients surveyed. “I think they have a general idea that it is going to affect 99% [of survivors], and they should come straight out and say it.”
Echoed another survivor: “They should give you a heads up ahead of time.…If you are going home from the hospital and they tell you this last minute, I don’t think that is very helpful because you are already being bombarded by other information.”
Despite the prevailing side effect of bowel dysfunction, Dr Sun observed that surgery remains one of the most common and effective treatments for CRC. However, the troubling fact remains that there are few evidence-based protocols to support positive adjustments to changes in bowel function.
Survivors desired more information on managing bowel function in an emergency as well as what type of food helps with bowel function, and they also wished for the opportunity to talk to others who share the same experience.
“They could have said, ‘you are going to have to dash to the bathroom, but we will have diapers or something for you.’ I [wish they] had a process of helping you get through that,” revealed another patient.
Of those surveyed, 39% preferred information on bowel dysfunction to be given before surgery, while 50% desired information prior to discharge. The majority of survivors (63%) asked to participate in a bowel rehabilitation/support program following surgery.
“Evidence-based interventions that are timely and personalized are needed to support positive adjustments to bowel changes following surgery,” concluded Dr Sun. “Survivors need more information on managing bowel function.”
