TABLE 3.

Illustrative Survivor Quotes for Each Category of Challenges

Category of Challenge	Quote
Negative psychosocial effects from surgery or ostomy	“I was a middle school teacher when I became ill… I often had to run to the bathroom between classes and sometimes during class. I retired early in part because the work-related stress became overwhelming.” (survivor with anastomosis) “My ostomy is a permanent fixture attached to my body. Having the thought I will never be normal again, and feeling I no longer really have control over a body function…. Constantly thinking of [the stoma] and worry what would happen next….” (survivor with ostomy)
Bowel and ostomy management	“If I’m going to a major league baseball game, I eat very little the day of the game—towards the end of a game, the beer drinkers are standing in a line to use the bathroom—I can’t take the chance to have to wait in a line.” (survivor with anastomosis) “Odor control is probably the biggest challenge. It requires frequent emptying when in social environments—taking care of what you eat and when you eat it as a control measure—using a fresh bag/wafer to minimize odor prior to a social event—having a bag break or split, or having the clip come undone is never fun in a public place.” (survivor with ostomy)
Late effects of cancer treatments	“Both my intestines and vagina were greatly affected by the radiation I had after surgery…. It’s possible to have a busy life, just not eating much during the day. That and a good attitude goes a long way.” (survivor with anastomosis) “I regret that my hernia, not my stoma, is obvious.” (survivor with ostomy)
Comorbidities and aging (other than rectal cancer)	“I am a self-employed artist, selling my products… at street fairs, markets and festivals. The most difficult problem I’ve had to deal with is incontinence. I can no longer work all day in my booth… and I’m often tired. Much of this difficulty may just be a function of getting older and I could blame my condition on the cancer operation but honestly I don’t know.” (survivor with temporary ostomy) “The greatest health challenges for me are related to diabetes, cardiovascular disease, and bilateral hip and spinal problems. The cancer is just another chronic condition along with the above.” (survivor with temporary ostomy)
Postoperative recovery	“Had a bad start, spent 8 days in hospital. Learned nothing about taking care of myself after surgery. Was sent to care home to learn more about things. No one knew anything about my condition. Had a meltdown. Couldn’t stop crying. A doctor… talked to me and got me out and sent me to an ostomy nurse (2 days later)… Finally got someone to take my stitches out so I could sit… had a lot of ups and downs but I’m still here.” (survivor with ostomy) “One of the biggest problems I had was the recovery time for healing and the amount of pain I had after surgery… I believe my recovery time was lengthened due to the fact that I returned to work too soon… but I could not afford to stay off work any longer.” (survivor with anastomosis)
Negative experiences in health care	“… The medical crew gave me no clue as to what to expect after surgery.” (survivor with temporary ostomy) “The greatest challenge I think is to get the attention of medical professionals and staff to see that quality of life issues are almost as important as the diagnosis/surgery/treatment/cure and recurrence of cancer.” (survivor with temporary ostomy)