There is much more awareness nowadays of how what we eat may affect our general health and well-being. Unsurprisingly therefore, food and diet were topics that many people with a chronic health condition commented on. However, food and food-related issues such as eating out, kosher food preparation or sharing festive meals at special occasions were of particular importance for those affected by Crohn’s disease. Therefore this summary will focus on their experiences.
Crohn’s is a chronic inflammatory disease of the bowel which interferes with the absorption of nutrients into the body. Its symptoms include abdominal pain, diarrhoea, rectal bleeding and weight loss. Its exact causes are unclear, but research suggests that both environmental factors and genes play a part. Treatments to control the inflammation include powerful drugs such as steroids and antibiotics, but importantly, the type and range of food the person eats can also help to control the symptoms.
Sylvia tries to manage flare-ups of the inflammation by going on a very bland diet and avoiding...
Sylvia tries to manage flare-ups of the inflammation by going on a very bland diet and avoiding...
Age at interview: 74
Sex: Female
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Can you say a bit more about what you do when you’re having a flare up in terms of your diet?
Yes. It would just be a very bland diet. One of the things is, they say that you shouldn’t have a lot of dairy products, but sometimes at times like that I will have milk. Just, not a lot, just a little, bread, milk, rice, things like that. Pasta without any sauce, tea, I … weak tea I find is quite soothing. So something like that, something very, very bland.
And how long would you carry on having that diet for?
For as long as I’ve got the discomfort, and normally it lasts for three, four days and then I sort of go back onto a normal diet, but you know, sort of sensibly. I don’t suddenly sort of start eating a lot of high fibre food and things like that. And I would also have white fish, but you know, steamed or something like that, or baked. So yes, stuff which is very, very bland.
Do you feel because you’ve had this experience with the Crohn’s and because you’ve had the colonoscopy and you could see the path through your intestine, do you feel that you’re much more sensitive to your body then you would have been otherwise?
Sorry much more…?
Sensitive to your body and you’re, you are very sensitive to how your body is reacting to how you treat it sort of thing.
Yes, oh yes, because you, you feel maybe you shouldn’t abuse it. Mind you once you’re feeling well, you’re sort of back to your normal diet. I like a glass of wine, maybe a couple of glasses but when I have the symptoms I don’t touch any alcohol at all. But I must admit I haven’t, you know, when I’ve felt well, I haven’t felt diet has irritated it at all. It’s just if I’m feeling off then it does.
Have you ever thought maybe I should change my diet continually or not?
No. Simply because I like tasty flavoursome food and to my mind the, you know, pasta, rice and that and even plain fish is okay, but not exciting, so… No so I’ve never thought and obviously if, if the doctors had told me that I would have to, I would, like initially when it was first diagnosed before the operation when they said go on a low fibre diet. I really stuck to that religiously and in the end it didn’t make any difference. But you know, clearly it had worked for a while, but no, I mean providing I feel well on my normal diet you know, if I’ve found I was getting more and more flare ups I wouldn’t do, and you know, this time the doctor hasn’t suggested seeing a dietician or anything so ….
Harvey has adjusted his diet over the years but nothing seems to help him put on weight.
Harvey has adjusted his diet over the years but nothing seems to help him put on weight.
Age at interview: 63
Sex: Male
Age at diagnosis: 56
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Oh I have changed my diet. I avoid lamb only because one time when I ate lamb, the day afterwards I had a blockage. I mean the lamb could have been innocent, but I don’t know. So I avoid lamb. I avoid any tough meat. Chicken’s alright. Most vegetables, citrus fruits I am a bit wary of. That happens a lot; gurgling. Eggs, I, I love eggs but I can’t, they don’t agree with me. They actually can cause quite a lot of stomach irritation and pain. If it’s in like scrambled eggs or omelettes, but cooked in a cake, that’s fine. That doesn’t cause any problem. So I avoid eggs. I have kind of adjusted to the things that I know are a bit dodgy.
Nothing seems to help me put on weight. Even the dietician, who tries, she says, “Well we’ll do a high fat diet again,” like I did in hospital. So she said, “You can eat as many doughnuts as you like, as many cakes and biscuits and bread.” It hasn’t helped, I haven’t noticed anything. If anything I’ve lost weight. You know.
Now there was a period when my wife said I was looking quite gaunt. And I looked in the mirror and thought blimey, yes, you are. But I don’t, and my consultant that I see occasionally for a few minutes [laughs] will say, “You’re never going to be fat, Harvey.” And that’s it. You know, I don’t want to be fat. I just want to put a bit of weight on. But … really, realistically with the state of my intestines, I don’t think I’m ever going to put any weight on. It just goes through too quickly.
Some people with Crohn’s managed their condition by switching to a very bland diet - such as rice, potatoes and white fish – for a few days whenever they would experience a flare-up. Some would also use liquid food supplement to make sure they got essential nutrients whilst avoiding irritation to the bowel. However, the link between diet and symptoms was not straightforward and there seemed to be a lot of individual variation in terms of what people said they were able to eat. Most of them said there were certain foods that they tried to avoid as they were likely to cause a flare up of inflammation or make existing symptoms worse. The most frequently mentioned offending foods were tomatoes, citrus fruit and fruit juice, high fibre foods such as vegetables, other difficult to digest foods such as nuts and drinks such as coffee and alcohol.
Hinda's dietician told her it was okay to drink fruit juice, but she reacted very badly. She has...
Hinda's dietician told her it was okay to drink fruit juice, but she reacted very badly. She has...
Age at interview: 54
Sex: Female
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But when I do eat, I have to watch what I eat. I really don’t drink anymore at all. I used to love a drink. But most times that would set me off. Food, the funny thing is I can eat Indian food. Spicy doesn’t seem to bother me, but yet, if there was a, half a tomato in it, I would know straight away because there’s something in tomatoes and citrus fruit that really affects me badly.
Sorry, but no they didn’t give you any information. And even in the hospital they sent a dietician in to see me. She didn’t even really know very much because she was saying to me, you have to drink more. And I was saying, “Well drink what?” I couldn’t drink Seven Up, fizzy drinks. I couldn’t drink fruit juice. And she said, “Oh you can drink fruit juice. You can drink pineapple juice or prune juice.” Now I knew for a fact that I could not drink prune juice. And I had a feeling I couldn’t drink pineapple juice.
And the first night I said, well I said to my husband will you bring me in a carton of either or whatever. And he brought me in, I don’t know which one he brought me in, and I had like a tiny little glass of it. And the nurse came in to me about 11 o’clock at night, and I was in the loo. And she came back to me about 4 o’clock in the morning and I was still in the toilet. And she came in a good few times to see if I was alright. And, there I was. To be honest I was in a dreadful state. And I threw the pineapple juice down pan. That was the end of that. I don’t drink fruit juice or anything like that anymore.
The dietary advice from Rosalynde's consultant and dietician was unhelpful. She is now seeing an...
The dietary advice from Rosalynde's consultant and dietician was unhelpful. She is now seeing an...
Age at interview: 70
Sex: Female
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When you were given the diagnosis did the doctors give you enough information at that point?
No, nothing like enough. First of all I asked the consultant I saw what diet I should be on. And he said, “Oh it’s just trial and error.” Now it is trial and error to an extent but - because you speak to some people suffering from Crohn’s and they can have such and such, whereas you can’t - but there are certain things that most Crohn’s sufferers know don’t agree with them. I mean we, my husband and I always have fresh orange juice at breakfast and the first time I had it, I just wanted to die. It was so painful. Now when I’ve spoken to the other sufferers they say, “Oh yes, fruit juice is out.” Well that must filter through to the doctors. And potatoes are another one, wheat to a certain extent. I mean, you know.
I was then sent to a dietician. I had forgotten about that, who was absolutely useless, absolutely useless. I think a lot of people and I’ve certainly seen it from the web, are... combine losing weight with diet, even though it’s known that Crohn’s suffers generally are thin. I don’t know if you’ve found that.
Have you been to support groups?
No, no, I haven’t been to support groups. I have been to an alternative therapist. I hope my doctor doesn’t look at this interview [laughs] who is the acknowledged person/guru on Crohn’s and colitis. Her name’s [name] and she’s Swedish and she has given me a lot of help with diet and the way I go about Crohn’s. I go to her privately as well.
And you found her using the internet did you?
No, my daughter found her. I think she may have found her, I’m not sure if she found her on the internet, but my daughter’s very into alternative therapy and not taking drugs. Maybe it’s because she’s got a mother whose work was in the pharmaceutical industry, but she, so she was, you know, “Don’t go on drugs for the rest of your life mummy.” I think I probably will be, but never mind, and she found out about this woman and has been nagging me to go. And I said, “Well there’s no point in me going until I feel, you know, controlled in some way by the medical profession, and then go,” which is what I’ve done. And I think she’s going to be good. I’ve only just started going to her so it’s no time. Her diet has been very good.
After almost 20 years of living with Crohn's Riva knows what she can and can't eat. She still...
After almost 20 years of living with Crohn's Riva knows what she can and can't eat. She still...
Age at interview: 34
Sex: Female
Age at diagnosis: 16
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I try to keep to a certain diet, that I know I can do, you know, with so many years of experience with it. Like almost twenty years of experience that I have with the Crohn’s, I know more or less what I can and can’t eat. Out of just trial and error, because no two people have the same, the same disease with Crohn’s. It’s very individual and I know people that can eat stuff that I would never dream of. You know, I’m just looking at it and I feel bad so I know what I can eat and what I can’t. At the moment I don’t eat anything. I’m on a liquid diet called Modulen that’s actually been proving very helpful for me at times just to calm the bowel down. And waiting for the tests.
And in terms of going out and eating out. Is it that you, I mean do you have trouble eating out. Do you know that there’s certain things you can’t eat?
I know there’s certain things I can’t eat. I just avoid them. Just go and eat what I can. I love eating. I love eating out. I’m a great fan of food and of cooking. I even tried a catering course once. But I just try and adjust the food to my condition. If I cook at home and it’s something that I love, and I can’t really eat it the way they have it in the restaurant, I’ll adjust it to the way I can eat it.
Can you give me an example of that?
Let’s say curry. There’s a lot of curries with lots of vegetable in, and vegetables with lots of fibre that I cannot eat. So I modify it, I put chicken instead of veg or tofu or something that I can eat. Create my own thing. So, no I don’t like compromising about food, but I have to, so I just try and make it as tasty as possible.
People differed in their views of how much difference they thought diet made to controlling their symptoms. Many people said they had received little advice from health professionals on the subject. They had found out which foods to avoid by trial and error. But the process of cutting out foods one by one to see whether it made a difference could feel very restrictive and frustrating in itself.
Linda would love to be able to find one food she could avoid that would make taking tablets...
Linda would love to be able to find one food she could avoid that would make taking tablets...
Age at interview: 50
Sex: Female
Age at diagnosis: 15
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No. Did you, have you found that changing your diet has helped?
No. I have never, it’s very frustrating, you always want to think to yourself, there’s one thing there, if I stop eating that I won’t need those tablets anymore, but it’s the process of eliminating the foods that could be upsetting you, to me I think is worse than the illness. I want to get on with my life, and eat sensibly and eat everything I want to. I do, there are some things that I’ve starting avoiding, but there’s nothing I’ve stopped eating. And I don’t really know how much of my avoidance is just a change in my taste and how much is a bit thinking perhaps this is inflaming my digestive system.
Sara's son didn't have a strong reaction to any food in particular. After his relapse, the...
Sara's son didn't have a strong reaction to any food in particular. After his relapse, the...
Age at interview: 48
Sex: Female
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They sent us to the dietician who helped us to re-introduce the food. The understanding that I got was yes, some foods trigger Crohn’s and by doing it this way we find out those. But when he had the relap… the relapse the second time they kind of said, “Oh don’t worry about the food so much. You can introduce them every day or something like that. Don’t worry. There’s been new research.” So things change. And I thought if there were new research my poor child suffered so much four months ago, you know.
But nothing, nothing actually triggered him, triggered it. Oh well I don’t know. We had this difference of opinion, shall we say, [laughs] with the consultant. As I said he didn’t have diarrhoea, which was helpful, but also unhelpful, because I think with other Crohn’s patients that I’ve spoken to, they know that if they eat say onions or something like that, they will be in the loo within half an hour. He never had that sort of thing. He never had a direct obvious result from any of the foods.
For some people, taking medication had made a big difference. Being on tablets meant they could eat a wider range of foods than previously. One man with an arterial feed had to hook up to his tailor-made nutritional fluid every couple of days to avoid dehydration. Getting all the essential nutrients into his body this way freed him up to be less cautious with what he could eat and drink by mouth.
JP has experimented with diet in the past but now that he is on a different medication he feels...
JP has experimented with diet in the past but now that he is on a different medication he feels...
Age at interview: 45
Sex: Male
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And have you tried to change your diet at any point?
I did try and mess around with diet. Definitely when I was bad diet affected it. I mean there are some things, you know, you could, when the thing was active you would never digest mushrooms or sweet corn or things that are incredibly fibrous. But I don’t really need to now. As I say, I’m literally one hundred per cent well with it, which is ironic that have to be sitting with an abscess this morning.
Having a very short gut means Gareth mustn't eat what would normally be considered a healthy diet...
Having a very short gut means Gareth mustn't eat what would normally be considered a healthy diet...
Sex: Male
Age at diagnosis: 13
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I did, you know, I had problems with depression over the years as well. And some of that’s been pretty bad, but the last six or seven years since I’ve been doing stand up it’s just been the most productive period of my life and possibly the most healthy, even though to everybody, you know, to a layman, I would seem pretty unhealthy. You know, but I’m never going to be fat. My diet is, because of the fact that I have a short gut I mustn’t have a healthy diet, as in a conventionally healthy diet. So fibre is no good, because I have a short gut, I don’t need things to go through quicker. They already go through quicker then they should. So my diet is high fat, high sugar, if I want KFC five times a day, I can have it. If I want fried breakfast five times a day I can have it. And nobody’s concerned about my diet until I hit ten stone. I haven’t ever been ten stone. Unless I was on steroids when I was kid, you know, it just doesn’t happen. So I suppose one of the results is that I can eat crap food. But I always did eat crap food so no loss there.
Do you get hungry?
Yes, but I get hungry, but it’s, I think a lot of it is psychological. I mean obviously if my stomach, if I’ve been eating a lot, then my stomach is stretched and so therefore it is hungry and wants food. But if I got used to not eating, it would shrink. I wouldn’t be as hungry and I wouldn’t suffer for it. And I even have, because I don’t take in the full amount of weight from food, or nutrition from food. I actually have a liquid that I can connect to, that will, it’s soy bean liquid emulsion which is really fattening and I can hook up to a bag of that a week. I choose not to, because I try and eat something. But yes, I would just like, I would like view a few developments, you know, I’d like to see a cooler back pack, for my for my travels, you know.
Food and enjoying festive meals together play a big part in Jewish culture. For some of those affected by Crohn’s disease, participating in the traditional customs and keeping to the dietary laws was at times difficult.
Sara's son had a relapse just before his Bar Mitzvah which meant he was unable to eat any of the...
Sara's son had a relapse just before his Bar Mitzvah which meant he was unable to eat any of the...
Age at interview: 48
Sex: Female
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What happened was that his bar mitzvah was actually at Passover. So he was diagnosed at the New Year which is September time. And he was really working out, okay he’ll be on this medication, he’ll be off it, he’ll be into food and by the time his bar mitzvah comes he’ll be able to eat. And then he had the relapse in February and that completely threw him. He said, “I’m not going on it again. I’m not doing it. What’s the point?” And he was really, really angry. I mean you can imagine. It was absolutely terrible for him. Absolutely terrible.
And you don’t think that helped particularly, that second time?
It didn’t. It didn’t. I mean it sort of kept going, but I know he wasn’t well. So he was sitting there. I don’t know if you’ve any picture of a bar mitzvah.
No. Oh there’s a bar mitzvah in the Synagogue.
So okay that’s in the Synagogue, but you also have a sit down meal with a lot of people. He was sitting there [laugh] at the top table and he was eating a potato and I know this sounds really pathetic, but food becomes quite crucial, especially to a boy of thirteen and he’s sitting there, and everyone’s having a nice time and having this festive meal, and he’s sitting there eating a potato. That’s all he had, well actually he wasn’t supposed to have that, but I had to give him something to eat [laughs]. What do I do?
A few people with Crohn’s disease had been told by health professionals that the high fat content of a traditional Jewish diet might be one of the reasons why the condition is particularly common among Ashkenazi Jews. This suggestion was met with some scepticism, as arguably not everyone of Jewish ethnicity eats the same fatty foods and many traditional Jewish recipes have been adapted in line with modern ideas of healthy eating to have a lower fat content. Research seems to confirm that certain molecules produced during fat metabolism – ‘free radicals’ - may contribute to inflammation in Crohn's disease. However, ‘free radicals’ are also produced when people experience stress or infection. Several people spoke of the importance of resting when they experienced a flare-up.
Sylvia was told of a link between Crohn's and eating a traditional Jewish diet high in fats. She...
Sylvia was told of a link between Crohn's and eating a traditional Jewish diet high in fats. She...
Age at interview: 74
Sex: Female
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I forget the professor’s name, but it was one year when they were doing a lot of, you know, we’re, we’re talking about the late 1960s now when they were doing a lot of research on Crohn’s, because I remember they had some medical students, and, I was, you know, sometimes they would show... ask them to come and diagnose a patient, and I was the patient, you know, because I had Crohn’s. And, he said to me, “It can be quite common with Ashkenazi Jews who do the diet, the chicken soup, the fats” and things like that. But I must admit I don’t know his, I don’t remember his name or anything.
And so were you brought up with quite an observant background?
Oh yes.
My parents were, they weren’t ultra Orthodox, but very Orthodox, and, we were brought up having a strictly kosher diet, celebrated all the festivals which, you know, food is often, well food is connected with all of them. So yes, it was a very traditional Jewish upbringing. My paternal grandparents, they were ultra Orthodox and so, it wasn’t until quite late on in my marriage, that I actually sort of even tasted non kosher food because we would never eat out of restaurants or anything like that. And even now, I have kosher food, you know, I buy kosher meat. I’m not Orthodox but I buy kosher meat. I keep my meat and milk separately. I don’t eat milk after meat. So, I follow all the dietary laws, except maybe my cooking is a bit healthier than my parents. I don’t use, yes, loads of fat and you know, if I make chicken soup, most of the fat’s gone and things like that. But I do keep, you know, kosher.
A couple of people spoke of the symbolic meaning of food and eating and the disruption Crohn’s had caused to these processes. One man who developed Crohn’s as a child described how his condition had affected the whole family. His parents had survived the Holocaust and themselves experienced long periods of starvation. Seeing their child unable to enjoy his food was especially difficult for them, and awareness of their unhappiness was difficult to bear for their son.
Marcel's father brought him a chicken into hospital and felt a lot of pleasure from finally...
Marcel's father brought him a chicken into hospital and felt a lot of pleasure from finally...
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It was difficult growing up with parents who all they wanted to do was stuff food through me. I mean the family joke that I didn’t enjoy my food, my brother and my father would hold me upside down and they’d pump food through me. And butter’s bad for you now, but my father, we always had toast in the morning, he’d smear about 2lbs of butter on one piece of toast, because in the Jewish region fat is good and it’s a Yiddish expression, schmaltz, you know, so he would put a half a pound of butter on a piece of toast and try and fatten me up. And I’d eat it.
Why do you think that, just to stop you medication or to ‘cure it’ in inverted commas then?
Well as I was in hospital and they told me I had Crohn’s and they put me on the pills, they worked. I remember phoning home and saying, “I hate this hospital food.” In my last days, my father went to Blooms and brought me half a chicken and it stank the whole hospital out and everybody fancied it. I think he had probably the best pleasure of his life watching me devour it. He turned up with a chicken and a.... Only a Jewish parent would do that.
But he probably ran all the way to Blooms and ran all the way to station and to [hospital] and then got so much pleasure watching me eat it.
I was out of the hospital probably within a week. Still seven stone, with probably not much more weight because I wasn’t enjoying the food that, when you’re in hospital and you see dieticians and they give you these silly diets, and they tell you because of your small bowel now, you have to eat food that’s skimmed, de-pipped because it would irritate my little bowel. I had to be careful of diarrhoea and other things.
So, my food then was tasteless and so therefore I didn’t enjoy it anymore, and then going to [wife’s] brother almost a month afterwards we made a barbecue steak and I remember the first time, thinking my God this is delicious and I was able to swallow it, and then seeing my own doctor, who said, “Eat what ever you want.” So gradually my parents saw me going to them and eating well and starting enjoying food. So I’ve made up for it since, and enjoy food with a relish now.
Last reviewed September 2015.
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