Background
Methods
Context and setting
Data collection
Analysis
Ethics
Results
Participant | Diagnosis | Gender | Ranges of age |
---|---|---|---|
1 | CD | F | Young adult |
2 | CD | M | Middle-aged adult |
3 | CD | F | Young adult |
4 | UC | F | Middle-aged adult |
5 | CD | F | Young adult |
6 | UC | F | Middle-aged adult |
7 | UC | M | Young adult |
8 | UC/CD | F | Young adult |
9 | CD | F | Middle-aged adult |
10 | CD | F | Older adult |
11 | CD | M | Middle-aged adult |
12 | UC | M | Young adult |
13 | UC | M | Older adult |
14 | CD | F | Young adult |
15 | UC | F | Young adult |
16 | UC/CD | M | Young adult |
17 | UC | M | Young adult |
18 | UC | M | Middle-aged adult |
19 | CD | M | Young adult |
20 | CD | F | Young adult |
21 | UC | F | Young adult |
22 | UC | M | Middle-aged adult |
23 | CD | M | Older adult |
24 | CD | F | Middle-aged adult |
25 | UC | M | Middle-aged adult |
26 | UC | M | Middle-aged adult |
27 | CD | M | Older adult |
28 | CD | F | Middle-aged adult |
29 | UC | F | Young adult |
30 | CD | F | Older adult |
31 | CD | F | Middle-aged adult |
32 | CD | M | Older adult |
33 | UC | M | Older adult |
34 | UC | F | Middle-aged adult |
35 | CD | F | Young adult |
36 | CD | M | Young adult |
37 | CD | M | Older adult |
38 | CD | F | Middle-aged adult |
39 | CD | F | Middle-aged adult |
40 | CD | M | Middle-aged adult |
41 | CD | F | Young adult |
42 | CD | F | Young adult |
Managing uncertainty
“I’ve never been a big eater, and sometimes it happens that I don’t want to eat anything. Then I just nibble on a bit of dry bread, and that’s it. It always helps me quite well. Even during the strongest acute flare, when I couldn’t eat anything.” (ID 21, female, 24, CD)
“There are many things, such as cabbage and beans and even lentils, which you should eat as little as possible or should not eat at all.” (ID 14, male, 72, UC)“I cannot tolerate mushrooms and curry or any extremely spicy or oily food.” (ID 31, female, 17, UC)
“About the food, there are actually no abnormalities with me. I have noticed, if I eat something greasy or something else that doesn’t suit me, then my stool gets more liquid, but if I then eat an apple or a salad then everything will be fine, just how it’s supposed to be” (ID 19, male, 18, CD)“No, I can actually drink and eat what I want. I can tolerate everything, I have no restrictions. (…) Spicy dishes are not a problem.” (ID 36, male, 28, CD)
“Things that I can tolerate when I’m feeling good are for example sweet peppers (…), but only if I am feeling OK. But then I still have trouble sometimes.” (ID 7, female, 40, UC)
“And lactose I have some problems with. Nothing serious, not a real lactose intolerance (…) but I feel better using lactose-free milk.” (ID 31, female, 17, UC)
“It’s actually funny, it works quite well, my body has a good feeling for what I can or cannot tolerate. So there are things like I’m actually eating a lot of vegetables and salad, but there are phases during which things I always totally liked, I’m now disgusted with, and then I don’t eat them, of course, any longer (…) the feeling can be wrong sometimes, but that’s really quite rare.” (ID 8, female, 31, UC/CD)“Well, if I say to myself: ‘I would like some nice gyros with french fries, and coleslaw, which you should not eat according to every diet recommendations brochures. If I have this craving, then I tolerate it well, it’s actually pretty funny.’” (ID 22, male, 54, UC)“What never was a problem at all is the cheeseburger from (fast-food chain). This is absolutely crazy, it doesn’t matter how bad I’m feeling, cheeseburger is never a problem.” (ID 4, female, 48, UC)
“Initially I was upset because I thought, “What have you done wrong this time?” Because after all the diet and what you shall eat and shall not eat, so you had a strict diet and you’ve done nothing wrong, you have been living healthy in the past weeks. You haven’t had any alcohol and yet that [means: the acute flare].” (ID 26, male, 42, UC)
“It is different for everybody, so there is, I think, in ulcerative (colitis) no special diet that is good or bad. But during the good phase, everyone can tolerate something different well or not.” (ID 5, female, 48, UC)“There are days when you can’t eat anything at all.” (ID 21, female, 24, CD)
“You actually have to try out everything for yourself. There are guidelines from the doctors, but basically you have to try out everything for yourself, what you can tolerate and what is not so good or what not at all. Because it is just very different.” (ID 14, male, 72, UC)“Yes, I came up with my own diet. So there are still a few things that I cannot tolerate, or I would not risk, I just no longer try.” (ID 29, female, 45, CD)“And then my gastroenterologist said to me: “Basically,” he said, “you need to try out everything, you have to find out what is best. If you crave something, you should eat it.” (ID 23, male, 54, UC)
“I know exactly what I can eat (…). I’m using a kind of traffic-light system. Red are things I never eat, yellow what I can eat when I’m feeling fine and green I can always eat. There is not very much green, though.” (ID 4, female, 48, UC)
“And then we (his doctor and himself) found out what I do tolerate, so really at the end I have eaten in the morning and evening: salami, bread, and an egg, and that was it, actually, with pâté. And that was all I ate the whole time. The whole seven months. It was always the same. I could not stand it quite soon. But everything else I was unable to eat.” (ID 35, male, 57, UC)“There was a time when I really only lived on bananas and cottage cheese (…).” (ID 29, female, 45, CD)
Eating: between craving and aversion
“First you starve, because you are on an IV.”And then you start to loose it because you think about Nutella. And you want to eat a piece of bread or something because you starve and languish for weeks. (…) And then I eventually begged the doctor: Please, cut the crap out of me, I would like to go with my daughter for an ice cream. Because I lost so much weight and you get so crazy. (…) You get mad from hunger, although you are not really hungry, but you want to eat something again. This idea of food (…).” (ID 33, female, 48, CD)“If you spend several years in a hospital because of an acute flare, you start dreaming to be able to eat a mountain of french fries. Although I am not really fond of french fries or fried things. (…) Or just wish that you could eat a mountain of ice cream and that you could actually eat because you can tolerate it.” (ID 29, female, 45, CD)
“And I said to my husband “I’m still hungry” and he said “let’s put a pizza in the oven” and then he came up with the great idea to eat four toasts with a lot Nutella at 9 p.m. and I was feeling queasy (…) and on Sunday I had to go to the emergency room.” (ID 1, female, 30, CD)
“Yes, when I crave something (french fires) (…). But I knew: “You have to ‘pay the price’”, but I did not care. I was willing to risk the consequences.” (ID 29, female, 45, CD)“I like roast pork very much, but when it’s dry, you can forget it. There has to be a little fat. Or nice pork knuckles. So I treat myself twice a year. But I know exactly, the next two days I will have some problems. But I can’t give it up completely. I don’t do it every day.” (ID 24, male, 60, CD)
“So for me, it’s normal that I don’t eat all day and only in the evening. For me it is not bad at all, though.” (ID 9, female, 31, UC)
“Problems with my weight, because you are afraid to eat. Because I know exactly that every time I eat something, I feel sick and have to practically run to the toilet and have diarrhea again. (…) I try to eat only the essentials. Drinking is exactly the same. I hardly drink anything (…).” (ID 34, male, 58, CD)
“And of course, the whole thing makes it all very difficult, to maintain a normal weight. (…) And she [nutritionist] really helps me to find a way to get sufficient nutrients despite all and to keep the weight and maybe not to slip into a situation of malnutrition. This is of course a great danger here, when you suddenly no longer tolerate so many things.” (ID 15, female, 35, CD)
Being different
“Yes, the very fact that I cannot eat everything in a restaurant makes a visit quite difficult for me. I mean, it is possible, but it is difficult.” (ID 1, female, 30, CD)“Yes, last year was just complicated; in May, my son got married. There was a very big celebration and everything and I didn’t feel good and most of the food I could only look at. (…) If you can only eat a small amount of diet food, but everything else is impossible, and then you realize, there are just some things you cannot participate in anymore.” (ID 37, male, 60, CD)
“Yes, the issue with food is difficult. Even more so because even if I feel good, I have to reveal myself to others sometimes. You always have to explain. Recently, while at a barbeque, I do not know why, but I said: “No, I cannot eat this.” There was, I think, something like guacamole, and I say, “Yes, there are onions in it,” and one of the BBQ guests asks “Why? Onions are good. Why don’t you eat onions?”, but I did not wish to explain.” (ID 29, female, 45, CD)
“And I remember that before that I was diagnosed, there was a rumor in my family that I had bulimia or anorexia. Because I had to go to the restroom after the meal. Even If it was just to pee. But nevertheless, there was already a comment: ‘Oh, really just to use the toilet?’” (ID 44, female, 28, CD)
“And so I have to cook two meals at home because my husband likes it solid, with a lot of cream sauce, and I cannot (eat it).” (ID 1, female, 30, CD )
“We flew to Spain in February and I was a little bit concerned. Because of another country with different food. We thought if things get really bad, then we are going back. And everything was great, everything was beautiful, but after about three or four days I got diarrhea and it went on for days and I thought we would have to go home again (…).” (ID 1, female, 30, CD)
Professional help as a further source of uncertainty
“The doctor gave me some brochures like “cooking with ulcerative colitis” and “diet recommendations”. (…) And it was helpful in the beginning.” (ID 23, male, 54, UC)“She (alternative practitioner) helped me, we discovered things I couldn’t tolerate, and this means a lot.” (ID 37, male, 60, CD)“Then the doctor came in and said: “You are eating. What are you doing?” This was a surprise for me because the others (other doctors) in the rehab hospital always tried to persuade me to eat more.” (ID 7, female, 40, UC)
“So then he (the doctor) made a test: ‘Yes, positive’, he said: ‘Yes, well, seems you have a gluten intolerance, you should read up on it online and live accordingly. (…) So then I got the first nervous breakdown. (…) Because it is very dramatic, because you cannot shop for groceries like you used to and you cannot eat normally.” (ID 42, male, 42, CD)“They (the doctors) thought for a long time that I had gluten intolerance and should follow this diet. I remember, it was really hard for me as a child. (…) But when I learned that this wasn’t true, I remember, we had been waiting for the test results on the phone and I had a roll in my hand. As soon as my mom said, you do not have it, I ate this bread so gratefully. That was nice. That was a nice experience.” (ID 43, female, 28, CD)
“And the food (in the hospital) was an extremely greasy soup you actually shouldn’t give someone who just had a stomach operation, I didn’t understand, I had real strong spasms after eating and was feeling really bad.” (ID 3, female, 31, CD)“And then they (nurses) brought me something and I knew I could not eat it. I had specified it earlier, but it was still on the tray. I looked at this tray and just started to cry and was upset. I thought it was just so awful that I could not eat anything (…).” (ID 29, female, 45, CD)