Supplement 2.
Participant Quotes that Exemplify All Study Themes and Sub-themes.
Theme and sub-themes Example participant quotes
Ambiguity in the view and perception of food and eating in IBD
Cure M2: “I've seen major benefits major changes from going just eliminating grain and corn out of my children's lives.
XXX is almost in 100% remission with Crohn's.”
M4: “The biggest thing that that program taught me was: food is medicine.”
J2: “Because honestly my goal is to teach her what's best for her body and hopefully one day when she's older and she can feed herself in the right way where she may not need medication because she can heal herself internally with the right foods.”
Cause M3: “I'm like this you know broken record. Like you can't eat that, you cannot eat that, you're you know you're killing yourself, you're killing him. It was me because I mean I won't eat that way. I've never eaten that way.
You just taste the stuff and you go what. Who makes this? And what's in it? I mean you don't know what they're putting in this. I mean it's just. And plus with the, you know it's a moneymaker. How can we make money and give me some of the cheapest stuff possible to make money for corporations. I mean then that's and that's where I'm at. A price tag for everything. I'm almost conspiracy theory thinking that people are keeping people sick just to keep medicine going.”
M6: “The standard American diet has been so ingrained. And I've told my kids I am sorry. I said all of your growing up, this is what I thought and this is what all the literature pointed to as what you should have. A diet, you know lots of grains, and a good number of vegetables and fruits, which we did, and then very, you know, kind of less meat. And that's pretty much how we ate all of our days. And now we've kind of flipped that upside down and I've just said, you know, I'm really sorry. I thought that was what was best for you, but I don't think that's true anymore. I think that if that were true, then we would be one of the healthiest societies in the world and we're one of the sickest. So there's got to be something wrong with that viewpoint.”
Symptom trigger M4: “Seeds irritate it. Hard things irritate it. Too much fiber, it scrapes your insides. ... It's actually scraping the lining of their stomach and their organs. So what's happening then is its getting irritated and then you eat and
then it's an autoimmune disorder, so then it's attacking itself even more. So it compounds the problem. So that's why the dietary needs are very important on a Crohn's patient. And then when you have a flare up, it's also very important because what your body is saying is this: hey I've got an infected area here. I'm hurting. So that's when you have to really pay attention to everything you eat. Spicy foods are going to irritate you like crazy.
You're going to feel like somebody just shoved a hot knife in your gut.”
J3: “There's not hardly anything she limits except dairy. She does still feel like dairy really is kind of a trigger. So it's not that she cuts it completely. She just really limits it. ... She would tell you that limiting some of the things like dairy, like when she over eats it, she does see problems from it, but eliminating it didn't stop the disease.”
Unrelated M1: “There was nothing that made him flare or made him go into remission. … Neither of my kids had any food triggers.”
M6: “He [her gastroenterologist] thought it would make no difference at all. And I cited the Seattle. Are you familiar with that? With the Seattle Children’s. I'm like you know because maybe she could not be on medication at all. How wonderful would that be? You know and he's like, it's only 10 patients. Or it wasn't even 10. It was like fewer than 10 patients. And so it's just you know anecdotal, it's not real science.”
J1: “Well he tolerates really everything that he did before his diagnosis, and probably better I would say.”
Challenges related to food and eating in IBD
Insufficient Nutrition Advicea
M1: “So, we saw a dietitian. Actually, we talked to her on the phone. … Not with his diagnosis, but the year before his diagnosis for ways to be able to get more protein and more iron in his diet.”
M2: “You have to use your resources and not just the papers. Literally, they gave me the paper of what XXX could or couldn't eat. I threw it out the window because I was annoyed because it goes from the American standard diet which is just crap. You are not supposed to have that many wheats, grains and legumes in your diet. You're not supposed to have that much sugar in your diet. I mean it's got to be more fats because your body runs on fat.”
M3: “XXX just he thinks everything that I say is nonsense. I need to get a medical professional to tell him what to do and what not to do. It's the only people he would listen to. He won't listen to me because I know nothing, you know. So I guess, I mean it's just he will do anything a doctor says. I mean, we did go to a dietitian and talk about things but he didn't really find her credible.”
M3: “No one's talking about diet but me, OK. Which is really kind of concerning.”
M4: “I do recommend for parents. There is a list of items that you can and can't eat. Do not give that to your kids.
What happened was she decided to go through that list of items mentally and decided she will eat five things.
She restricted herself to five things.”
M5: “I think we had a few [dietitians]. I think we talked to one, one time and they gave us a flyer. I googled a lot.
Crohn's Colitis Foundation - went through their stuff and you kind of put it all together. This is probably going to hurt. This one's okay.”
M6: “I wish I would have gotten support in improving XXX’s diet after her diagnosis because I thought I would get some. I was like well, we'll ask the doctor see what he thinks. He was like I don't think it matters. But I will say that when I went to the IBD conference and I felt like that was actually really informative. They had some empirical data that showed there is a relation. There is a correlation. So it was frustrating to me that I didn't get more support, you know when, when you when you do have empirical data. It's there. Why does it have to be let's just trust the medicine? Or I mean and I'm okay with saying well let's do the medicine but let's also see if you know or let's implement some changes to how you're eating and you know because I don't think there's a person on the planet who thinks that hamburger helper is actually good for you. You know what I mean. Or frozen pizza or whatever processed food is all throughout the grocery store. I don't think there's anyone who really believes that's good for you. Right. But it would have been nice to have heard that from a physician. Or not having him say in front of my kid, No. It doesn't matter. … I would have had someone else on my team.
Not just mom saying it.”
M6: “So I was not happy with the nutritionists I talked to at the hospital because I was like. We had one consultation with her and she recommended you know mostly grains and to limit. … I just remember that popcorn was on the list of good things for her to eat. And I'm like, how is that even possible that something so fibrous as popcorn would be good for her to eat? And it was basically the standard American diet from the government that I was handed to me. It was like there was no consideration made for the fact that she was a Crohn's patient. And when I tried to ask questions related to you know, well isn't this too fibrous or that too fibrous? ‘No, fiber is important. She needs fiber.’ I'm like, OK. But you talk to other Crohn's patients, those moms, they tell you. I'm trying to remember what it was, grapes or something like that. There was some innocuous fruit and I mentioned it at one of support groups and they're like, oh yeah my kid can't eat grapes.
Grapes make him sick.”
J1: “It kind of got a little confusing I think because it ended up so close to the weekend. So, we had a dietitian come and speak with us who was not the GI dietitian. She came and did the instruction on the low residue diet plan
with us and then maybe she was on vacation or something. I don’t recall, but they kept saying the GI dietitian will come and talk with y’all. And honestly, maybe she did and I’m not remembering. That could be it. But then after he got the Crohn’s diagnosis, we got moved to a different floor and so I think that’s where everything was much more of the whole team, consistent sort of messaging. It was, if you can tolerate it, you can eat it.
And I remember them all… the theme was: when you have a flare up, you’ll need to come back to the low residue diet, but if you are not having a flare up and you are not having symptoms, then it is really hit or miss.
Some people can tolerate milk and some can’t. So just play it by ear.”
J2: “Honestly, I wish I had just known about the diet beforehand or that it could have been so beneficial. I wish that that would have been presented instead of medicate, medicate. … The diet is such a huge key in this and I really don't think it's looked at as much as it needs to be.”
J3: “We saw the gynecologist and she said, ‘I’d like to do some sensitivity testing on XXX. Food sensitivities.’
And I was like, sure. I didn’t talk to her GI doctor about it, but we did go that route and then I took the results to him. Which at that point, we had already been dairy, gluten, corn and egg-free. When you eliminate dairy, gluten, corn and egg, there was so little she could eat. It literally was like fresh fruit and vegetables and meats, which are not low residue foods. And it was so hard. And so the first time we did see [her gastroenterologist]
she was starting to get really bad. He said, ‘I don’t want to go against what your gynecologist is telling you, but GI is my thing and I’m not a fan of this particular sensitivity test.’ And we had been doing it for probably 3 months at that time. All those things. And he said, ‘she’s losing weight, her GI problems are not improving and she’s starving.’ When we saw him, she was literally crying; she was like, I’m trying everything I can.”
J4: “Initially she was put on a pretty restrictive diet. So no raw fruits and vegetables, gluten free and dairy free. Her gastroenterologist gave us some lists but we have never seen a dietitian. Even when recently she was admitted with some liver abscesses and we even requested to see a dietitian we weren't able to see one. I’m not sure if it was a miscommunication. I don’t know. It really would have been nice for someone to just sit down with us and really kind of look at my daughter. You know specifically her height and weight, and her case, her disease and tell us what she can't have. This is going to hurt her. What she can have. What's good? Whether probiotics are important. I really feel like more could be done with diet but it's just really hard when you don't know where to look. When you go online you can find in one place tomatoes are wonderful and then in another place to avoid them. So there's a lot of conflicting information on the Internet.”
Lack of family cohesion
Spouse
M3: “When he refuses to eat, he can play the sympathy card with his dad and his dad will take him to a fast food restaurant. XXX knows how to play the game. So it's me getting my husband on board more than, you know, because he has that out right. When it's two against one it's really, really hard. It's really hard.”
Young siblings
Extended family
J2: “It was harder for my son because he was a bread and pasta kid. That's what he wanted to eat. And so when we were like sorry it's not going to happen because XXX can't have that. And in the very beginning because it was so new to all of us like we did, we stripped our house of everything. Like my Pop Tart kid was like where are the Pop Tarts? Where's the cereal? I'm like, sorry we're not having any of that in our house right now. ... And so I think he was the hardest to deal with.”
M6: “I mean the only other factor I think is sometimes with extended family they have a hard time seeing that it's possible that not having her on a mostly vegetable diet might be OK, you know. ... XXX had an argument with her. It can affect your relationships for sure.”
Expense J3: “I mean it was somewhat of a strain on us because of where we lived and how far we had to go to get the food.
You know and it is expensive. But someone that didn't have resources. You know, I wish insurance would help with that if there is research to support it.”
Feeding Challenges M1: “We were asking him what he eat. I mean, we would give him anything at this point. I didn’t care if he just ate cookies all day long. Just anything to get some kind of calories in him. And it was just all falling on deaf ears.
He would have nothing to do with it.”
M2: “So I mean you still have people who think they know everything even though they aren't considering the diet that we're on and they don't understand that it is a lifestyle change. It is a lifestyle choice and it's not for everyone.”
M4: “She couldn’t eat because it hurts. Like it felt like somebody was stabbing her in her abdomen when she ate.
And then when she did eat it would go through her and she’d have acid diarrhea and she was burning on her butt and bleeding sometimes. You know from the acid because the body couldn’t process it. So it was very difficult for her.”
M4: “I do recommend for parents. There is a list of items that you can and can't eat. Do not give that to your kids.
What happened was is she decided to go through that list of items mentally and decided she will eat five things.
She restricted herself to five things. ... So my advice to parents are when you start getting into the dietary stuff, stay in control of it. Don't let them read those parts of the paperwork because mentally they're going to go well I can only have this or I'm only going to grab on to this now. And then they eat something and they think it's hurting them, like they have a pain discomfort. It's on the list. Oh OK. And they think, no I can't have that and they throw it away when it's not even the food. It's typically the Crohn's just comes and goes but they're going to say it's the food.”
M6: “You know, that's the deal with Crohn's, you just can't tell. Is it really that… was she picky like that from [age]
two to eleven because of Crohn's or because there is something about food that bothers her stomach?”
J3: “People say, why can't you… like they'd go to a restaurant and it's a big group, and she's asking for gluten free menu and I think a lot of the girls, especially that she played club ball with that weren't her close friends, you know, felt like it was more of a trendy thing for her. And it wasn't. To us it was life or death. It was a matter of keeping her healthy.”
Lack of control M4: “It was hard, you know. And it sucks because you know I'm a parent but I'm also a military guy. I was in the Marines for eight years, so my first reaction is where's the bad guy? I want to kill him, you know. Yeah that's what we're trained to do, you know, and there is no bad guy. There is nobody to go, you know, beat on him or scream at him. There's nothing you can do so you feel completely helpless.”
Resilience in family functioning
Positive family cohesion
M1: “We would have [the protein drinks] in a cooler when we would have to go to games, when we would have to go to friend’s houses. Our friends had them stocked in their refrigerator at their houses.”
M2: “My husband is extremely supportive. He's very much my partner. He comes alongside of me when we have to do something that's beneficial for our babies. He came along side of me. ... And so this was just another part of our life that we had to transition to.”
J2: “Like her teacher at the end of the school year, she felt so bad for XXX. Like they would have popsicle days and I would bring what she could have, and her teacher told me, she goes, I fought hard. Our team left and right and she said, I will buy this specific kind for my classroom because it's what XXX can have. And she's like, for once I want XXX to be [tears] a regular kid and a have what everybody else has. And so I mean, that's huge for a teacher. I mean not just for a teacher, but for anybody to acknowledge that she... that we eat this way for a reason and do the things that we do for a reason and it's to keep her healthy. And for her to want to encourage that, I mean that that was huge.”
J2: “When we first made the switch, family was very accommodating. Like my side, well both sides really, like if it's a big thing, they try to be very accommodating and make her special XXX stuff. And I always try to take extra things just for her. Or if it's one of those like potluck kind of things, it's going to be XXX-friendly because I don't know what else there will be. So they were all really great with it. Because I did. Like I just told them, I said this is… I let everybody know this is what we're doing. This is not something that's going to change. This is how she's going to eat.”
J2: “For the most part people seem to adapt to us more so than we have to adapt to them.”
J3: “I mean we have a wonderful family. I mean they would… grandparents, aunts, uncles, cousins were, you know, I mean they're still eating their stuff but like oh yeah they're just very supportive. I wouldn't say they would eat just like she did. Like Thanksgiving or Christmas or whatever, have all the food and you have XXX's food. But they were always, how do we need to do this for her? You know, so yes we had, I mean, we couldn't have asked for more support.”
J4: “Her brother had no trouble [with the diet]. So XXX is about 5’4” and 100 pounds and has struggled for that 100 pounds, and [her brother] is 6’1” and 200 pounds. So he's the older brother and he's the big brother and he's such a sweetheart and just was always worried about her. He really doesn't like it when she's sick. He's always been kind of protective and so he really just looked at the diet changes as something he could do for her because he felt that it was really unfair that she has all of this and he hasn't been sick at all.”
Control M2: “I think that I am a MacGyver in the kitchen. I can make anything I need to make everybody happy at my table. So my goal, and I knew would land on me. That's why I wanted to do it first. I had to come up with different ways to make spaghetti. So spaghetti squash was now my noodle. Zucchini, zoodles, were now my noodles. And you know coming up with organic pasta sauce.”
M4: “Sushi saved her. Sushi. She, we found a little sushi diner place, called actually called Sushi Diner and it was right around a corner from [the hospital]. And I decided to go take her to try it out because it was fish and some rice and some things that weren't, I was talking with the doctors, and things that weren't really going to hurt her. … But it was great. You know it was something that she could eat. It didn't bother her. And that's what she needed. She needed confidence and ability. She could have foods you know and move forward. And that helped a lot.”
M4: “You feel helpless but you're not helpless. And by not being helpless I mean that educating yourself and understanding the dietary needs, the medical needs and helping your child no matter how painful and they don't want to. Helping encourage them and pushing them along to do the things they need to do are going to be the main difference between getting over it, and, not completely, but getting to a point where there's healing back up or going to surgery and a colostomy bag. And the last thing I want was my daughter to have that. So I pushed super, super, super hard. Every way I could to get them to keep it happening.”
M6: “One thing that we've talked to XXX about, and really my husband has done a good job of talking to her about this, is you know it costs about thirty thousand dollars a year for the infusions. So right now we have great
insurance and you know, we only pay six thousand of that. Something like that, right. One fifth. But one day you're going to be an adult, and you're going to have to work for a large company. Right. So these are your options. Either, you know, you have to be pigeonholed into a large company that has a good insurance program so that you can change biologics if you need to or get whatever medications you need to. Or, you know, work yourself to figure out what foods contribute and hope that the medical community comes along with that idea and then one day you can just live without medicine. Wouldn't that be great?”
Hope M2: “I think when you are dealing with that much stress that it builds character and that strength has to come from somewhere and I give all glory to God because there's no way that I could have through that by myself. So he was obviously right there and we just did it. We didn't think about it. We didn't talk about it we didn't feel sorry for ourselves about it. Every now and then we'd have a pity party. You know we'd watch a movie. We'd ball and we punch each other in the arm and get back up and do it again. So yeah, but I wouldn't go back.”
J2: “And so I just put my faith in and jumped in and you normally don't see a change in diet like anything within for like a month because your body has to get rid of all the junk. So I did it on it on a Tuesday and I decided on a Wednesday we decided OK. I said I'm cutting all of her junk. She's going to be like strictly like no sugar and none of it. The next day [her stool] was fully formed. Completely normal and I was like, sorry God. I'm sorry I was like running from this for so long.”
Positive attitude and perspective
M2: “So yeah it's just like anything else. You set your mind to it. You say this is what we're doing because this is what works and then we go for that. You know instead of focusing on, oh we can't have this or we can't have that. Or whatever that was. That was the main point at the beginning. Like oh we're not going to be able to eat this. We're not going to be able eat this. And I would always try to spin it with, well that's kind of awesome that we're not eating that anymore because look at the ingredients and it really did force them to start looking at the ingredients.”
M5: “I kept copies of the list of things that were OK so that any time she had to go somewhere. OK, here's what she can have. This is what she can't have. Which, it wasn't as difficult if you think about it one day at a time. If you think, oh my gosh, she's never going to have this, it was daunting. But I mean. Yeah we just learned to work around it.”
J2: “So like, Mommy so-and-so is having a birthday party in class tomorrow and they're going to bring donuts. Can you get me a doughnut? Yes. I will go find you a special donut. Or they're having cupcakes. Can you make me cupcakes? Yes. And she loves it because at the school there is in the nurse’s freezer, there are special cupcakes just for XXX. So I think it kind of feeds that need for that attention. But yeah she's just I mean she's easygoing and she's a people pleaser and just very. Definitely my happiest of the three and the easiest of the three. So it's been good for her I think.”
J4: “Before and after with the diet changes, it's actually been really good for our family because we had to learn to plan. You know before it was just kind of, OK what do we have in the pantry, you know, as far as what to cook. But then the diet really taught us how to meal plan and how to plan out the week and go shopping to make sure that we have everything we need. Now the meals are all planned out; maybe not what order, but planned out for the week. And that's continued even though the diet changes have gone away.”
Parental perspective of FRQOL in families after IBD diagnosis
Positive M2: “Yes it's more expensive. But the quality of life that I get out of that is way better.”
J2: “She didn't feel good but that girl… here it comes [tears]... she's amazing because she never threw a fit. I just I told her… like the kid loved sweet tea. Loved it. And I said we're going to try something different to get your tummy fixed. We're not going to drink sweet tea anymore. We're not going to do this or anything like that. And she was like OK. Whatever you say. And so like, this was our place. We would come to [this restaurant], and you get sweet tea at [this restaurant]. That's what you do. And now she knows. She's like no. She called it un- tea for the longest time. So she would get her un-tea and her grilled chicken. … like it was me that was worried about it and worried about her being able to eat or not eat. And I mean she just every time. Like even her teachers are like, who is this kid that she like she doesn't care that all these other kids are eating goldfish crackers or Pop tarts or doughnuts or cupcakes and she's over here with something different. She just handles it like a pro.”
J2: “But XXX was fine. I mean she just knows. She's like I can't eat those. That will hurt my tummy. I'll be OK.”
J4: “When she was put on the restrictive diet, the whole family switched. No kid should have to have this diagnosis in the first place. That is already hard enough. We didn’t want her to feel different, or have to have different things from the family, and so we all just decided to do it. We might eat a little differently… everyone else when we were at work, but at home we just switched the entire family. All the same foods. And honestly we just didn't really see much of an impact. My memory is that it just didn’t have a big impact on our quality of life. It was hard and expensive, but luckily we had the means. My husband had just gotten a promotion and we were living in a smaller house, so we were able to do it pretty easily.”
Negative M6: “In the past, food was much more an indulgence and celebratory ... So it's almost like a hot air balloon coming down to the ground - woosh. Now food is nourishment. Let's enjoy it as much as we can, you know, but it is a process for me of learning how to... there is a lot more effort that I put in to making it more enjoyable. You know a lot of effort went into the other stuff too, but shoot, I could go into the discount grocery store and buy a
baguette, and that would be like fireworks going off in the household. Or you know, go buy a thing of ice cream and it's in the freezer and it's like we're living in luxury. ... Less. I don't want to say less enjoyment, but I think less enjoyment. I don't want to say that, but I think it's true that there is less enjoyment around the food.
But there's still enjoyment around the table because we have one another. But that kind of has to be your attitude. You can seek the enjoyment in your food. But I did feel like, Oh no, it's time to eat.”
Researcher: “With how picky he has always been, if diet were a bigger deal from the get go, what would that have been like?”
J1: “.... It would have been excruciating.”
J3: “When you eliminate gluten, dairy, corn, and egg, there was so little she could eat. It literally was like fresh fruit and vegetables and meats, which are not low residue foods, you know. And it was like. It was so hard.
And so the first time we did see him when she was really starting to get really bad, he said I know you're doing everything you can to help her and you're just grasping every direction. And he said I don't want to go against what your Gynecologist is telling you, but he said GI my thing and so he said I'm not a fan of this particular sensitivity test. And we had been doing it for probably three months at that time. All those things. And he said she's losing weight, her GI problems are not improving, and she's starving. When we saw him she was literally crying. She was like I'm trying everything I can. You know and she was she was so strict. … It's hard and that's why for a while I really did just have to say I'm going to stop listening to anybody except him, and even though I was like, I feel like diet is so important because it can treat so many other things in life. But I'm listening to him. I'm having to choose. Because I've got people all around me, even different doctors like her gynecologist and stuff telling me this, and you know just people all around you talking about it you know and trying to help you through it. And I was like I'm going to go by exactly, do exactly what he tells me. And she improved and it was, you know was drug induced remission or whatever but she has a quality of life that she did not have. I mean her quality of life was in the tank.”
aAt least one example quote provided for each participant.
