How do you Know When to Avoid a Food / When You're Flaring?

[strawberrys78]

Hey everyone!

I was diagnosed with Crohn's about a year ago, after having symptoms for 2 years. I have a 20 cm gap of inflammation in my small bowel.

I'm having a really hard time trying to discover what I can and can't eat. I usually stay away from red meat because whenever I eat it I usually get sick. Same thing with anything greasy/fried, anything with melted cheese like pizza, lasagna or spaghetti, etc. However, apparently I wasn't watching it good enough because I landed myself in the hospital about a week ago for 6 days. I had a partial obstruction in my bowel. I had hardcore unexplainable pain, no diarrhea, everything was normal all day, I began throwing up and I couldn't handle the pain so I went to the ER.

So now I'm on prednisone, pentasa, ranitidine, flagyl, and trimebutine. I am trying to figure out what I can and cannot eat. I know it is different for everyone. One of my crohn's friends cannot eat dairy or wheat at all, but I always thought I could.

However, recently for some reason something is telling me that I should avoid dairy. I don't know.

How do you guys know if something is hurting you? Sometimes I'll eat something and it will give me tremendous pain and diarrhea, sometimes only pain, sometimes only diarrhea, sometimes I will just burp a lot, sometimes I will heat squishing and squirting noises and feel them or things moving below my belly button, sometimes I will get bloated. So what of those symptoms are normal? When should I get worried? If I bloat would that be considered something I should avoid even if I don't get pain or diarrhea from it?

I want to avoid another obstruction. Also, what classifies a flare? I haven't went a couple of weeks without getting sick in some form the past two years, weather it be any of the symptoms that I stated above, or back/knee pain, or extreme fatigue... does this mean that I am just going through one giant flare?

Thanks for reading everyone.. I'm really clueless when it comes to Crohn's, no one in my family has it (although my mom has MS), I never had to watch what I am eating and my parents never ate super healthy.. also it is hard being only 21 years old.

 

[Cross-stitch gal]

I'm sorry to hear that you are faced with this challenge and am afraid that finding out what you can and can't eat is more like a trial and error type process. :ybatty: You are totally correct though, each person is different.

It sounds like you already know a few things that you are to stay away from. But, unfortunately the others you won't figure out till you try them. Is there someone your doctor could suggest that you could go to for ideas? Sometimes, that might help. Good luck. :hug:

 

[strawberrys78]

I'm sorry to hear that you are faced with this challenge and am afraid that finding out what you can and can't eat is more like a trial and error type process. :ybatty: You are totally correct though, each person is different.

It sounds like you already know a few things that you are to stay away from. But, unfortunately the others you won't figure out till you try them. Is there someone your doctor could suggest that you could go to for ideas? Sometimes, that might help. Good luck. :hug:

Thanks!! I might ask my GI to refer me to see a dietitian. I researched online things that people with Crohn's disease should avoid. Like, they say that whole grains, dairy, nuts, popcorn, tomatoes, etc. are things that should be avoided because they are harder to digest and more likely to irritate the stomach, but I don't really know if I should be 100% avoiding them.. like I'm scared about doing damage to my body without me knowing it (because I certainly was not expecting a partial obstruction when I got one!!) Lol.

 

[Cross-stitch gal]

It is really hard to know what you can and can't eat. Especially if you've been on the same type of diet for awhile and then find out suddenly that you can't have the same foods anymore. This has happened to me before. So, I understand where you are going. I hope you can find some answers to help you. Please keep us updated on how you're doing.

 

[wondering]

I also find that when flaring, sometimes it doesn't matter what you eat and anything makes me feel sick. So while it's good to try to identify foods that you know bother you, it may not always be the food.

When I first got diagnosed, any time I would get sick I would blame it whatever I had eaten. It made me feel like I had control and if I could avoid those things then I would never feel sick, which is unfortunately not the case. Food definitely plays a role, so I agree with trying to identify triggers and I think meeting with a nutritionist is a great idea and personally found it helpful in the past. Just make sure to cut yourself some slack and remember that sometimes the disease will make you feel crappy no matter what you eat.

 

[strawberrys78]

I also find that when flaring, sometimes it doesn't matter what you eat and anything makes me feel sick. So while it's good to try to identify foods that you know bother you, it may not always be the food.

When I first got diagnosed, any time I would get sick I would blame it whatever I had eaten. It made me feel like I had control and if I could avoid those things then I would never feel sick, which is unfortunately not the case. Food definitely plays a role, so I agree with trying to identify triggers and I think meeting with a nutritionist is a great idea and personally found it helpful in the past. Just make sure to cut yourself some slack and remember that sometimes the disease will make you feel crappy no matter what you eat.

Thanks! Yeah, I know, sometimes I can do everything 100% on point and still get sick for no reason. I also suck at dealing with stress as well, which contributes to my condition a lot, I find.

Because certain things are identified as being harder to digest/irritable to people with Crohns (i.e: wheat, diary, tomatoes, nuts, etc.) should I avoid these things on a daily basis altogether? Or only when I'm going through a flare?

 

[wondering]

Thanks! Yeah, I know, sometimes I can do everything 100% on point and still get sick for no reason. I also suck at dealing with stress as well, which contributes to my condition a lot, I find.

Because certain things are identified as being harder to digest/irritable to people with Crohns (i.e: wheat, diary, tomatoes, nuts, etc.) should I avoid these things on a daily basis altogether? Or only when I'm going through a flare?

It's probably different for everyone. I normally wait until I am sure I'm in remission but so far have been able to eat what I want! It was amazing to be able to eat salads again!

 

[strawberrys78]

It's probably different for everyone. I normally wait until I am sure I'm in remission but so far have been able to eat what I want! It was amazing to be able to eat salads again!

Omg I bet!! It's been soooo long since I've had a salad Pretty sure I have PTSD from them hahahah lol. I long for the day that I can have one!

 

[UnXmas]

I found this so hard because I don't react to specific foods. I react to fibre, and to the amount of food I eat, but I can eat some fibre, and obviously I have to eat a certain amount of food. I eat many calorie-condense foods to keep the volume of food I have to consume down but I also of course eat some low-calorie foods - fruit, veg, etc. With fibre, it's just a question of quantity.

Before I had an ileostomy, it took me months of trial and error to figure out that limiting fibre helped me. My reactions were not immediate - it wasn't like I'd eat a high-fibre meal and then feel bad - but after a few consecutive days of relatively high-fibre eating, my symptoms would worsen. I can't explain how I realised that: for so long I couldn't see it, and was misled by a lot of red-herrings where I assumed that because I felt bad, the food I'd just eaten must be to blame, but this wasn't the case. It just took a lot of time and experimentation. I can only recommend that when you're trying to figure out what you can and can't eat, don't jump to conclusions - look for consistent patterns, and don't assume that specific foods are to blame so much as the overall content of your diet over weeks.

Post-ileostomy, my reactions to fibre have become much more marked: as soon as I tried introducing the foods that are often poorly tolerated with an ileostomy, I got a blockage (which is much more serious than the increase of symptoms fibre would give me pre-ileostomy). So now I am eating tiny, individual portions of the foods that can tend to cause blockages, and never more than one in the space of a few days. The severity of my reaction made the food-symptom pattern very obvious in this case.

Some people with ileostomies can handle these high-risk foods fine, so it's not a straight-forward rule, it's still very variable from person to person. And I think this is what you have to remember, as it applies to people with Crohn's without ileostomies too: you will read that a lot of foods are potentially problem-foods: dairy, gluten, high-fibre, rich foods, alcohol, spicy foods - but these won't be problems for everyone. When you read online, take the advice you're given as foods to watch out for, but don't assume that just because they often cause problems, they will do so for you.

And most importantly: remember you'll get symptoms that are unrelated to eating, and that you may have times where whatever you eat will make you ill. Sometimes you'll feel ill after eating, and it will just be due to the fact that you've eaten and nothing much to do with what you actually ate.

I don't think you should worry about diarrhoea or symptoms like that - food won't cause long-term damage even if it causes you horrible symptoms for a while. I have to worry about blockages with the ileostomy, as these can be very serious, so I'm far far more careful with food now than I was before the ileostomy. Obstructions are also potentially serious, but I haven't heard of them being food-related in the same way that food and blockages with an ileostomy are. Was it confirmed that what you ate caused the obstruction?

Unless you know there is an association with obstructions, don't get over-worried about it - don't worry if you eat something that makes you feel bad, as it won't do lasting harm. Make sure you don't get scared of eating, don't feel you have to avoid everything that you read could be bad for you (because a lot of the information you find will be wrong, or will not apply to you), and don't worry if you make some mistakes. It takes a long time to find what suits you, and your reactions to food may change over time too.

 

[strawberrys78]

I found this so hard because I don't react to specific foods. I react to fibre, and to the amount of food I eat, but I can eat some fibre, and obviously I have to eat a certain amount of food. I eat many calorie-condense foods to keep the volume of food I have to consume down but I also of course eat some low-calorie foods - fruit, veg, etc. With fibre, it's just a question of quantity.

Before I had an ileostomy, it took me months of trial and error to figure out that limiting fibre helped me. My reactions were not immediate - it wasn't like I'd eat a high-fibre meal and then feel bad - but after a few consecutive days of relatively high-fibre eating, my symptoms would worsen. I can't explain how I realised that: for so long I couldn't see it, and was misled by a lot of red-herrings where I assumed that because I felt bad, the food I'd just eaten must be to blame, but this wasn't the case. It just took a lot of time and experimentation. I can only recommend that when you're trying to figure out what you can and can't eat, don't jump to conclusions - look for consistent patterns, and don't assume that specific foods are to blame so much as the overall content of your diet over weeks.

Post-ileostomy, my reactions to fibre have become much more marked: as soon as I tried introducing the foods that are often poorly tolerated with an ileostomy, I got a blockage (which is much more serious than the increase of symptoms fibre would give me pre-ileostomy). So now I am eating tiny, individual portions of the foods that can tend to cause blockages, and never more than one in the space of a few days. The severity of my reaction made the food-symptom pattern very obvious in this case.

Some people with ileostomies can handle these high-risk foods fine, so it's not a straight-forward rule, it's still very variable from person to person. And I think this is what you have to remember, as it applies to people with Crohn's without ileostomies too: you will read that a lot of foods are potentially problem-foods: dairy, gluten, high-fibre, rich foods, alcohol, spicy foods - but these won't be problems for everyone. When you read online, take the advice you're given as foods to watch out for, but don't assume that just because they often cause problems, they will do so for you.

And most importantly: remember you'll get symptoms that are unrelated to eating, and that you may have times where whatever you eat will make you ill. Sometimes you'll feel ill after eating, and it will just be due to the fact that you've eaten and nothing much to do with what you actually ate.

I don't think you should worry about diarrhoea or symptoms like that - food won't cause long-term damage even if it causes you horrible symptoms for a while. I have to worry about blockages with the ileostomy, as these can be very serious, so I'm far far more careful with food now than I was before the ileostomy. Obstructions are also potentially serious, but I haven't heard of them being food-related in the same way that food and blockages with an ileostomy are. Was it confirmed that what you ate caused the obstruction?

Unless you know there is an association with obstructions, don't get over-worried about it - don't worry if you eat something that makes you feel bad, as it won't do lasting harm. Make sure you don't get scared of eating, don't feel you have to avoid everything that you read could be bad for you (because a lot of the information you find will be wrong, or will not apply to you), and don't worry if you make some mistakes. It takes a long time to find what suits you, and your reactions to food may change over time too.

Thanks so much ! They told me at the hospital that the partial obstruction I had was due to inflammation. So I guess it isn't specifically from what I was eating. My plan now is to do "paleo" tweaked a little.. I am going to eat as natural and clean as I can, and limit my dairy and wheat, especially dairy because I have a feeling that might hurt me (got pain after eating frozen yogurt last week) however I am not going to cut it out altogether because it just isn't realistic for my lifestyle. There will be times that I just wanna have a sandwich made from whole wheat bread. Everything in moderation, I guess. I'm just going to try and eat healthy and I am using the app GI monitor to track my meals, pain and bm's. I was also told by the doctor at the hospital that pentasa isn't working for me and I will have to find another drug, it's looking like imuran or the other one similar with a 6 in the name.. I was on imuran before but got sick either from the drug or a blockage they didn't catch at the hospital so hopefully I don't get a bad reaction again! I guess I will just continue to try and eat healthy and hope for the best lol!!

 

[badbelly]

I've been struggling with this same issue! When I'm flaring any and all foods hurt, so I do a liquid/elemental diet.

A good nutritionist can put you on a plan where you start on very basic foods then they add new food groups in one by one to see what causes yous symptoms and what doesn't. You can also get a food sensitivity test (not the same as food allergy test) to test for everything at once. However the results aren't totally reliable.

 

[UnXmas]

I've been struggling with this same issue! When I'm flaring any and all foods hurt, so I do a liquid/elemental diet.

A good nutritionist can put you on a plan where you start on very basic foods then they add new food groups in one by one to see what causes yous symptoms and what doesn't. You can also get a food sensitivity test (not the same as food allergy test) to test for everything at once. However the results aren't totally reliable.

Be really careful about tests for food intolerances and sensitivities - most of them have no sound basis whatsoever. Stick to tests carried out by medical professionals and avoid those done by nutritionists and alternative health practitioners.

 

[strawberrys78]

Be really careful about tests for food intolerances and sensitivities - most of them have no sound basis whatsoever. Stick to tests carried out by medical professionals and avoid those done by nutritionists and alternative health practitioners.

Thanks! I was thinking about asking my GI to refer me to see a dietician.. But I think what I will do is eat as natural and clean as I possibly can and just take the food journal and if something healthy sets me off like a salad I will just reevaluate if that is something I should cut out. Gonna be so hard cause I love wheat and dairy.. Just wondering, is there a test they can do to check for intolerance to dairy? I never ever thought it hurt me before but lately I've been having my suspicions

 

[UnXmas]

Thanks! I was thinking about asking my GI to refer me to see a dietician.. But I think what I will do is eat as natural and clean as I possibly can and just take the food journal and if something healthy sets me off like a salad I will just reevaluate if that is something I should cut out. Gonna be so hard cause I love wheat and dairy.. Just wondering, is there a test they can do to check for intolerance to dairy? I never ever thought it hurt me before but lately I've been having my suspicions

Yes, your doctor can arrange for you to have a lactose intolerance test (lactose in in dairy products). You can also be tested for coeliac disease (reaction to gluten, found in wheat and some other grains). Apart from that I don't think there are any reactions to foods that can be tested for other than true allergic reactions, which you'd know if you were having.