Undergoing repeated colonoscopies – experiences from patients with inflammatory bowel disease

Figures & data

Figure 1. Enrolment in the study between April 2015 and November 2016. Included patients were approached with information about the interviews by letter (n = 25), at the clinic (n = 10) or by telephone (n = 7).

Table 1. Clinical characteristics and demographic of included patients (n = 33).

Sociodemographic data
Gender (n)
Women/men	18/15
Age (years)
Mean (min–max)	47 (20–77)
Clinical data
Medical conditions (n)
Ulcerative colitis	29
Crohn’s disease	4
Number of colonoscopies*(n)
3–5	8
6–10	6
11–14	14
>15	5

^* Patients’ own estimation of colonoscopies carried out during their lifetime.

Table 2. Example quotations from interviews to clarify themes and subthemes.

Theme and subtheme	Quotations	Respondent
Strenuous and life-saving
Necessary and interfering with everyday life	You have to take sick leave from work, and you will not get any payment. It takes a few days before you come back to normal again.	26
	It is a survival for me, that me, and you together. We have control. There is nothing to come in the way; this examination is necessary for me.	7
Experience and control	I like to buy things I may need to have at home for the bowel preparation, so everything is prepared.	8
	Once I have spoken with the health care professionals, and being confirmed, I have fewer worries.	14
Exposed and vulnerable
Shame	Once, I was criticized that my colon was not clean enough. I had the bowel preparation; it’s very hard when the appointment is early in the morning. You do your best and there is nothing more to do.	33
	You feel very exposed. You feel some liquids pouring out of you, and you know what’s pouring. You are lying in the examination room and not feeling on fleek.	3
Inferiority	You can’t do anything with the colonoscope inside.	3
	The colonoscopy was difficult; it felt like I had no energy and no patience, I just wanted to leave. I couldn’t drink more than half the dose of the bowel preparation and fainted. At the appointment next day I was very powerless and weak.	6
Uncertainty	It’s not entertaining to go through the colonoscopy, and it is painful too. The possibility of getting bad news is always on my mind.	20
	Every time you undergo the colonoscopy, you think, who is the doctor today?	19
Unpredictable
Respect and disrespect	The nurses do a wonderful job. They make you visible, appear in advance, and have a little chat to give you strength. The doctor appears shortly and performs the colonoscopy. You meet the nurses at every appointment. The nurses always feel very, very consistent.	17
	It’s the same every time I’ve been there. Everyone is so extremely stressed! Hurry, hurry; it’s like I am a piece of meat. They appear and soon they leave. There is nothing, no interaction at all.	29
Blame	The doctor found it complicated and had difficulties to perform the colonoscopy; I saw him sweating. I felt uncomfortable because he had a hard time.	6
	It’s always in my mind. She yelled at me because I held back the gases. It was so painful so the examination was interrupted and I had to come back to be anaesthetized and for examination of the entire colon. It was a very unpleasant experience.	16
Pain	I always say I want … ah, almost as much as I can get. I am already tired of the pain before the examination. I want to reduce the pain, as much as I can. Well, that’s the way it is.	8
	And you know that it hurts even if you get pain relief. It’s probably the worst part.	8
	When I get sedation, then I don’t find it difficult. It is just when the air is insufflating into the bowel. But it will end quickly.	25