Participants. All 16 invited patients (9 women, 7 men, median age 67 [range 33–81] years), 12 from the university hospital and 4 from the county hospital, agreed to participate. Initially, the study involved 5 consecutive patients and after a slight break in the study 11 more participants also were consecutively included. They were contacted at the hospital before discharge or by telephone after hospital discharge. Nine (9) interviews were conducted by the first author, and 7 interviews were conducted by the second author. Time from stoma reversal to the interview ranged from 4 to 6 weeks. The participants’ demographics and clinical history are shown in Table 1.
Interview analyses: Life being controlled by the altered bowel function. The analysis of the interviews resulted in 3 themes and 8 subthemes (see Table 2). All participants described major concerns regarding altered bowel function. Loss of control over bowel function and uncertainty regarding how the bowel worked limited their social lives, which led to their entire lives being controlled by the altered bowel function.
Loss of control of bowel function. All participants reported an increase in defecation frequency compared to before the primary cancer surgery. It was not unusual to have to go to the toilet 20 times a day. This led to sores and wounds in the perineal area and caused pain, which sometimes prevented the patient from sitting down. Several patients also suffered from painful defecation.
Before the stoma reversal, participants received information that their bowel function would alter, but none described being prepared for this reality. Reactions of shock and surprise were frequently expressed by most of the participants. Constant feelings of rectal urgency were common and were described by 1 patient as constantly having a knife in your back, forcing you to go to the toilet. Fractioned defecation was described by all participants, causing prolonged time on the toilet.
No, but it’s a bit like, you can go to the loo and you think you’re done, you wash your hands and leave and say no, I have to go to the loo! And you keep on like that! And it’s really bothersome! I go to the loo several times, like five times in a row. — Participant 4
Several participants also suffered from frequent bowel movements at night, causing disturbed sleep and tiredness during the day. The participants reported an inability to hold bowel movements and feelings of incomplete bowel evacuations. Almost all participants experienced episodes of FI. The total loss of control over bowel function was compared to having bad stomach flu.
Before in the old days, when you could regulate your defecation a bit, wait for a bit, sit and wait, and so on. Can’t do that now! It’s uncontrollable, and I have to manage it in my daily life. — Participant 7
Uncertainty regarding bowel function. Participants were greatly troubled by their inability to predict how the bowel would behave. Bowel function varied on a daily basis with no systematic pattern. The bowel behaved differently than it did before cancer surgery and could no longer be trusted (the participants word choice). Function varied from obstructed defecation to daily episodes of fecal leakage. Not knowing how the bowel worked, loss of control regarding bowel function, and prior episodes of FI created feelings of uncertainty and anxiety.
So it’s like you don’t really dare to trust the system…so it’s…yes it’s clear that…it isn’t any fun to poo your pants. That’s the worst thing about it, I feel. — Participant 3
Not feeling comfortable with oneself and one’s body also was experienced. This also caused uncertainty, and the patients put a lot of effort and energy into getting to know their new bodies and trying to find some logic to the unpredictable bowel.
Being limited in social life. Altered bowel function and the need for frequent toilet visits restricted social life. Frequent urgency and the inability to hold bowel movements made almost constant access to a toilet necessary. Participants also described the need to shower after each toilet visit in order to feel fresh and clean. This, along with feelings of embarrassment about having to use the toilet with abnormal frequency within a short period of time, caused many of the participants to stay home instead of participating in social activities. Some had not left home at all during their first weeks because they did not dare leave the toilet. This made managing daily chores difficult and made patients dependent on other people. Participants expressed how they were unable to use public transportation, go see a movie, go for walks in the woods, or go to the gym.
My social life has been severely affected! I say no to all social events. — Participant 5
Striving to regain control over the bowel. Participants used different strategies to cope with the difficulties that arose due to their altered bowel function and focused on finding a way back to themselves and regaining control over the body. The participants coped by using their ability and knowledge, support from family and friends, and by being grateful and hopeful.
Using ability and knowledge. Most of the participants coped by using previous experience and knowledge in life and, in particular, their time with the stoma. Many tried to control bowel function by making dietary changes. Diets that had proven effective during earlier illness or operations and dietary advice from the time with their stoma were resumed, with questionable results. Foods such as onion or coffee were avoided by some of the participants. A common strategy was to totally refrain from eating, if something special was planned.
If something special’s going on then it’s better not to eat. I daren’t eat in that case because it feels safer to just completely refrain. — Participant 15
When participants tried to tell health care professionals about their problems, they were told to be patient. This response caused patients to assume the symptoms were untreatable and turn to other sources (eg, the internet) for advice on coping with their situation. Great insecurity prevailed about whether other patients also commonly experienced bowel symptoms. A lack of information from health care professionals caused the participants to distrust any information they did receive until it was proven accurate. Although they tried to the best of their ability to cope with the situation, none of the participants knew how to manage their altered bowel function satisfactorily. They expressed the thought that concrete tips and advice from health care professionals, mostly regarding dietary advice and bowel regulating drugs, would have been appreciated. Several participants used antidiarrheals that were prescribed while they had a stoma. One patient stated it was a turning point when he started to use antidiarrheals. The use of these drugs allowed him to leave the home.
Some tips on how to eat, or that I could have taken that loperamide could have helped me from the start when I had diarrhea at the hospital. So perhaps I wouldn’t have had those worst 2 weeks there anyway. That would have been [appreciated]! — Participant 3
Planning their lives around bowel function was common to all participants. They were forced to constantly keep track of public restrooms and only dared to visit places with access to a toilet. To reduce the risk of fecal leakage outside the home, toilet visits were made before they left the house in order to try to empty the bowel. Another way to cope with potential leakage was to use incontinence pads or carry a change of clothes.
You have to think about this all the time, about having access to a toilet. Because you don’t know like when and what time anything will happen. — Participant 2
In striving to regain control over the body, 1 strategy was to challenge oneself. This strategy was most commonly seen among the younger (33- to 42-year-old) patients. They chose not to accept limitations due to altered bowel function but instead tried to force the body into obedience. One way was to ignore feelings of urgency, hoping that they would pass without an episode of FI. Another way was to defy the fear of leakage by going for short walks close to home with the toilet only minutes away.
I don’t really accept this thing with sitting on the loo for 5 hours every day! It doesn’t work for me, I can’t have a life like that!... I take more of an attitude that my body has to adjust to what I think is right…”— Participant 4
Social support. All the participants found it important to have support from family and friends in order to cope with their altered bowel function. This included practical support, such as help with grocery shopping and doing daily chores such as cleaning the house and mowing the lawn. It also included emotional support (eg, having someone to share the difficulties in life, making them easier to bear). Because talking about bowel habits in public was considered taboo, it was even more important to have someone close to talk to.
My wife, of course… We know each other inside out and then, when you live together with the problems that one or the other has, and we’re very close, so we live with this together…this is what I need… she helps and supports me all the way… — Participant 7
A lack of support from health care professionals made support from family and friends indispensable. One participant said she could not share her own worries and difficulties with her family because they were sick and fragile and talking about her problems made them even sicker. This made her situation harder to bear and she felt all alone and abandoned.
I think you can get quite lonely after leaving the hospital…When I was released, I went out through a door and then I was completely alone. I was completely abandoned! I should have had much, much more support than I did… No one can manage by themselves! They can’t… — Participant 10
Being grateful and hopeful. Despite great difficulties with their bowel symptoms, the participants expressed how grateful they were to have gotten rid of the stoma. They endured their altered bowel function because they felt having a stoma was worse. Only 1 patient said she sometimes regretted having the stoma reversed, but she also expressed gratitude that the stoma was gone. Most patients considered altered bowel function a fair price to pay as they were now cured of cancer.
Oh God, I’ve been through cancer surgery – what should I expect? I’ve been lucky! I think I’ve got a little handicap and I’ll have to live with that…I’ve been given a second chance in life. And I’m going to take good care of it! —Participant 11
The participants dealt with the rough with the smooth aspects of life and were grateful to be alive.
Yes, I’m still thankful. That’s how I think in order to handle the situation…there’s so much else when you look and listen and see that is so much worse… like the opposite to life… — Participant 8
All the participants hoped their bowel function would improve. None thought their symptoms would last for more than 1 year. They chose to be patient and positive about the future.
A desire to be normal. Participants stated they had high expectations of getting rid of the stoma and being physically restored. However, the high expectations were as yet unfulfilled due to the symptoms of altered bowel function.
Yes, first I thought I would be ecstatic to get rid of the stoma, but I never was! But that was because this was so much trouble instead… — Participant 13
Getting rid of the stoma. The participants viewed the stoma as a barrier to being able to freely choose clothes and recreational activities. They felt it limited them; for example, while they had the stoma they refrained from swimming, exercise, and other activities that involved public changes of clothes. Many chose not to tell people they had a stoma because it was considered not normal. Living with a stoma meant not having control over bowel function, which forced many of the participants to be preoccupied with access to toilets. Life with a stoma was difficult for most of the participants, and they had been looking forward to the day when it would be reversed. Receiving the date for stoma reversal surgery felt like winning the lottery.
It was such a relief to get rid of that bag! …It’s so nice now to be able to bend, yes, the difference is like night and day. — Participant 12
Instead of having to cope with the stoma, patients were forced to use incontinence products, ointments, and nursery bags that are used for infants. This was perceived as returning to infancy.
I thought it would be completely different. That I’d be able to wear those small briefs again…that it would be like before, but it never is… — Participant 10
Restoration of body image. The participants had a strong desire to regain bowel continuity and have a normal bodily appearance. Many saw the stoma as a constant reminder of their cancer and the reversal as the end of a period of illness and the start of something new.
I feel healthier, more whole. The disease doesn’t constantly remind me of it. The bag reminded me about what I’d gone through. And I’m so damned happy not to have that because now I don’t often think about what I’ve gone through during the day anymore. That’s so nice. That means I’ve moved on a bit. — Participant 3
At the time of the interviews (4 to 6 weeks post stoma reversal), all the participants expressed relief that the stoma was gone, including gratitude that their bodies looked normal again. Only 1 participant said that if the symptoms persisted, he would consider having the stoma back.