Can I control my bowel symptoms myself? The experience of controlling defaecation dysfunction among patients with rectal cancer after sphincter-saving surgery: a qualitative study

Figures & data

Table I. Demographic and treatment characteristics of participants

Characteristics	n	%
Age(years)
≤55	7	19.4
(56,65]	15	41.7
(66–75]	11	30.6
≥76	3	8.3
Gender
Male	24	66.7
Female	12	33.3
Marital status
Married	22	61.1
Divorced	10	27.8
Widower	4	11.1
Education
Less than junior school	8	22.2
Middle and high school	19	52.8
College graduate and higher	9	25.0
Occupation On- job	13	36.1
Retirement	23	63.9
Economici status of family
Poverty	3	8.3
Simply having adequate food and clothing Well-off Rich	9 20 4	25 55.6 11.1
Time from surgery to interview(months)
(0,3]	6	16.7
(3,6]	9	25
(6,12]	12	33.3
(12,24]	9	25
Type of operation
Robotic anterior resection of rectal cancer	28	77.8
3D laparoscopic assisted anterior rectal resection	8	2.2
Distance between the anal margin and the lower margin of tumour(cm)
(2,5]	6	16.7
(5,10]	19	52.8
(10,20]	11	30.5

Table II. Interview guide

Interview questions

Is there any bowel symptoms existing after surgery? What are the most distressing bowel symptoms? How the symptom influence on your daily life? How do you cope with the defaecation dysfunction? What factors do you think could influence the bowel symptoms? How do you deal with these factors? How do you find the methods to manage the bowel symptoms? Do you think these bowel symptoms could be relieved by your management? Who do you want most to give you suggestions and assistance about managing bowel symptom and why? What do you think is the most difficult part in managing these symptoms and could you describe it in detail?

Table III. The themes and subthemes generated from the results

Theme	subtheme	Selected quotes
Having motivation to control defaecation dysfunction	Driven by the physical burden of defaecation dysfunction	“I had to defecate once an hour before, and it later became better, once every 2 hours. 1am,2am,3am … that was the time I should get up for defecation. Of course, sleeping for a whole night was almost impossible for me, so I had to find all the possible times to go to sleep at daytime” “the first two months were really miserable to me that I can hardly control a little.When I felt to defecate and I stand up from the bed,at the same time, the stool is leaking out of the anus and the trousers were polluted at once.” “Absolutely the defecation got better, but ‘normality and health’ was far away from me. I was a little anxious to determine the effective methods to control abnormal defecation.”
	Driven by the physiological burden of defaecation dysfunction	“I have none of these functions now, so I have to make efforts to modulate the status, but I think the modulation will be a long-term project.” “15 months passed and the symptom is still existing … … Could you please tell me how long my defecation could return to normality as the status before surgery? Or it won’t return forever … … ” “It was embarrassed that I suddenly got the feeling of defecation at meal with my friends and I had no idea how to explain to them because I can hardly wait a minute in case that the stool may leak out at anytime, and that’s what I were the most ashamed of. I can’t image if the stool leak out in front of my friends ….” “Once I farted, and there was definitely some excrement coming out as well. I was scared about this, so I would rather hold my flatus for a while.” “I would go away from the crowd once I wanted to fart, or others might feel strange and wonder, ‘where did the foul smell come from’. In order to decrease the flatus I tried to reduce the amount of some foods in my diet.”
	Driven by the social burden of defaecation dysfunction	“I dared not to take part in the dinner with my friends and relatives and I was worried about whether I could find out the toilet once I want to defecate.” “I don’t need my friends to my home to visit me,specifically,I don’t want to see anyone else. For 1 hour’s talking,I may go to the toilet several times and that’s embarrassing.” “I went to the Disneyland with my grandson and everything seemed normal that day. However, the day after that day it turned worse suddenly so I guess if I have eaten something bad or unfit for my bowel in Disneyland. Seems that I still can’t go out for more activities.” “Her trousers and the sheet were contaminated everywhere by the stool that night. When I finished washing the sheet and came back to bedroom, the stool was everywhere again! I knew it was the bamboo shoots that caused the loss of control of defecation so I advised her not to take it anymore in the future.”
Using strategies to control defaecation dysfunction	Obtaining information support from others	“When I returned to the clinic for examinations after surgery, I asked the doctor how to cope with the bowel symptoms, and he told me that I could try to practice contracting the levator ani muscle.” “I asked him why my flatus was so much everyday and Doctor Xu told me that it was attributed to two much meat in my diet. So I came back home to lessen it.” “my workmate also suffered from this disease years ago, he told me that it was better to form the regular defecating habit-to defecate once at morning, once at noon and once evening. I am still making efforts in this way.” “some suggestions are given by my son and he found them on internet or somewhere else. Different fruits and organic vegetables were always sent to my house everyday which were ordered in the internet by him.” “I had always been bearing the symptoms of defecating nearly 10 times a day, and I had to find help from Chinese medicine. It has decreased to 4–5 times now, I guess that may be related to the Chinese medicine that I have taken within these two months.” “My wife cut the whole apple into pieces and made them easier for me to eat nearly every day; sometimes she even squeezed the fruits into juice for me. You know, fruit was not my preference in the past.”
	Dietary modification	“I have found that too much food with starch worsens the bowel symptoms; for example, noodles and sweet potato in particular led to much more flatus, and the stool leaked out of the anus with the flatus”. “Watermelon was found to aggravate symptoms on several occasions, especially in summer, so I shouldn’t eat too much”. “I thought banana and Chinese chives were helpful to me, as they made the defecation be smoother and easier for me”.
	Application of assistive medications and tools	“I put some tissues or pads under the ass just at night in case that bed and trousers were made dirty during sleep”.(C15) “when I go outside, I prepare some tissues on the underpants, like this tissue that I folded it at home.” “I had taken probiotics for one or two years before surgery, and it was helpful; now, the probiotics also help a lot when the stool is hard to defecate.” “sometimes I wanted to defecate, but however I make efforts it just wasn’t discharged … … I used to take probiotics when this situation occurred before and it really worked so I tried this medicine now.”
	Readaptation of the new defaecating habit	“I thought there was no need to moderate the defecation because in my opinion that was not illness but normality. We always said ‘once the belly has been cut, 10 years will be needed to repair it’. I thought there was no need to worry about it, and it is indeed recovering now.” “I tried and knew that there was a great chance to defecate meanwhile with the meal, so I just needed to discharge the stool before the meal and that situation wouldn’t happen any more.”
	Choosing activities helpful for controlling bowel symptoms	“That was really a little strange, I have found out that when I was working outside, the feeling of defecation never came to me, and if I spent the same time staying at home, I would have gone to the toilet several times. So I preferred to spend more time outside!” “Sometimes when I finished walking outside and went back home, the difficulties in defecating went away, and the stool could be discharged smoothly. Walking made defecation comfortable!” “I occasionally found out that after I finished exercising with certain equipment, the defecation became extraordinarily smooth that day, and only that particular equipment worked like this!” “I always found that when I kept the sitting position, the feeling of urgent defecation was lessened and I could control it. But once I stood up, I had to go to the toilet as soon as possible. So I knew I could drive a car to work by myself and that would be safer than taking bus or walking.” “once I started to walk, the stool came quickly and couldn’t be held on. So I just walked near the house.”
Facing barriers to controlling defaecation dysfunction	Confusion arising from conflicting information	“I asked the doctor how to manage the bowel symptoms, and he just told me there was no need to pay much attention to manage them because these symptoms would recover as time went by. But many other patients tried to control them by themselves and some methods seemed work. What should I do?”
	Overreliance on personal intuition	“Although doctors told me that foods rich in fiber were good for smooth defecation, like corn and celery, I thought these foods were so stiff that they may hurt my bowel or they may damage the wound in my bowel. I have never eaten them during these months.” “The old people in our family always told us the Chinese chives were stimulating food and that was also the rule from our old ancestors. I believed it without any suspicion, and it was forbidden in my diet.”
	Confusion caused by the different requirements for treatment and controlling defaecation dysfunction	“The more food I ate, the more frequent would the defecation be, and the anus would be more painful, but I also knew if I didn’t eat enough food then I couldn’t stand the chemotherapy any more. That would be fatal to me. That would be not good for my recovery. So I told the doctor once the chemotherapy was over, I won’t eat so much food anymore”
	Lack of self-discipline	“doctors told me to eat more vegetables and fruits in my daily life, I tried my best to do that at the beginning after surgery, but I really don’t like vegetables, so I gradually quit nowadays.”
	Constraints related to objective social and family factors	“Recently, I was taking meals at my relative’s home, and she prepared many dishes including too much meat. I couldn’t blame her, but I did not want to eat so much greasy food in case it caused more frequent defecation.” “my workmates often ordered so much dishes that I had eaten too much food unconsciously. I found that once I took meal with workmates at restaurant, I had to defecate more frequently the next day.”