Food/remission

[monroe]

food/remission

okay, im still fairly new to crohns, and the more i talk to my cousin and doctor the more confused i get about food, diets, and flare ups.

first what exactly is a flare up completely?

second, my doctor put me on entocort 3 1/2 weeks ago, he says it should of knocked me into remission to where i can eat anything and have no abdominal pain and i shouldn't be running to the bathroom. i am now waiting to take a bone density test and be put on a immunosurpressant because the entocort isn't working. my cousin on the other hand(24 y/o diagnosed when he was 19) says there will always be certain foods you have to stay away from because flare ups can occur at anytime ..so whos right? does remission mean you can eat whatever you want or will there always be foods you have to stay away from?

kinda sucks not being able to eat anything but broth and boiled chicken right now lol.

 

[My Butt Hurts]

Once you are in remission you will probably be able to eat things that you couldn't tolerate when you were feeling sick, but it's best not to overdo it. You have to treat your insides well all the time, not just when you feel yucky.
That being said, what bothers you will vary. Just like everyone on here responds to meds differently, everyone on here responds to trigger foods differently too. Some of us can eat dairy, some of us can't. Some of us are fine with fruit, some aren't. The only thing that I know for SURE bothers me is beans, apple cider, onions, and spicy food. Others on here might have no problems with those.
So.. basically the answer about food is - you'll just have to test it and see.

 

[teeny5]

I can eat a lot more for sure when I feel better. But, I still cannot eat beef, really greasy fried foods, and spicy foods.

 

[monroe]

thanks! i cant eat beef, greasy&fried foods, fruit, whole wheat/whole grain food, or anything with a lot of dairy. so far thats all i know. i'm going on liquids for a day or two just because i had the worst flare up last night and my whole body is just killing me. I thought i was dying lol.

 

[Crohns08]

I can eat fried foods which is against my diet (SCD) but not how you would normally fry something. I believe which use corn powder with seasonings in peanut oil I believe. I only have this once a week to once every two weeks. Just depends on when I get fish. Sometimes we use the nutflour on the chicken, that is so good!

 

[monroe]

Yumm, its sounds good! I'll have to look up some sort of recipe for it. I dont really have a diet, sounds bad i know ..but if i eat something and i feel fine, than i know its one more thing I can eat.

 

[RHOV]

i've been learning the hard way that even in remission, there are still foods that will send you running to the toilet every few minutes. no more blackberries for me.

 

[jams002]

what kind of food/remission???





___________________
Great thing to know about busby seo test.

 

[Crohns08]

what kind of food/remission???





___________________
Great thing to know about busby seo test.

Can you be more specific?

 

[BWS1982]

All the medical texts, and all the GI's concur to me that "remission" is the absence of any symptoms, so, unfortunately, if you are running to the toilet, that is a flare, if you are even going anything but "normal" stool, that is a flare, if you are cramping, or see any blood, or have any ulceration or exudate, that is a flare. Symptoms=flare. Asymptomatic=remission. "Flaring" is a wide category of symptomology, unfortunately...."Remission" is what is very simple (but hard to achieve), it is simply asymptomatic life. I had that for about 4.5 months between my flares. This flare is almost 1.5 years old now....Even all my medical documents (have copies, had to study up hardcore too to fight for disability appeals) refer to flaring and remission this way.

The concensus, according to my last GI, is that there isn't enough science yet to discern whether foods can trigger a flare, and it very well may vary from patient to patient too, one patient may be "binge-worthy" in remission, while the next just needs a glass of milk or a spicy snack to start a flare that will last years on end.....Crohns is just one enigmatic SOB, and we all have to wage our own wars with our own tactics, that, sadly, have to be learned, not taught. Just my 2 cents of "research"....

 

[BWS1982]

OMG that sounded pompous, I need to start taking half a Clonazepam instead, I can barely remember typing that post....

 

[Yanick]

Interesting reading all these different points of view. I am continuing to be amazed that in spite of all the research, it's hard to find two Crohn's patients who have been told the same thing.

My doctor told me that no matter what I eat, food can never trigger a flare.

Also, he told me that cramps, frequent stools, and occasional diarrhea are something I should get used to, even while in "remission".

To be honest, I am getting really tired of getting conflicting information, even between doctors.

 

[teeny5]

My GI told me "you'll have some good days and some bad." I think that is crap! As for food I think that it aggravates the situation so if you are very close to flaring it can put you over the edge, but I can see why a dr. would say that it doesn't trigger a flare. I think it is crazy that so little is known about the disease and how it is so different for everyone.

 

[monroe]

bws: thanks a lot. i was so confused. thats what i pretty much thought, when i went to my doctor he said I should be experiencing no symptoms if I'm in remission. So obviously I'm not there yet.

yanick&teeny: my doctor told me the same thing. that foods don't bring on flares ..but i think thats completely ridiculous. i asked if i should see a nutritionist/dietician and he said that my medication once it kicks in I'll be able to eat anything ..lets see how long that takes. if my doctor told me that I'll have to get used to bad days i'd probably end up choking him lol.

thanks for all the replies.

 

[BWS1982]

I think some docs get "food causes Crohns" and "Food gave me a flare up" mentally next to each other, and want to make sure the patient doesn't blame a food they ate for "giving" them Crohns, but the truth is, those are very different concepts. For food to give one a disease, and for one to make it worse are in stark contrast.

All my experience lends to "remission" being an absence of symptoms, but I've seen a good number of members here say their GI said differently. The packets and paperwork I've been given and printed out all had scales of symptoms and defined all the baseline as what I used to be (weight, BM #, etc...) as what remission is. I think some docs consider remission to be a "baseline" and if a patient isn't expected to get back to "normal" and only to a "lessened disease", then their baseline or "remission" is, by altered definition, still being slightly symptomatic. To be honest, a doc who gave up is one I'd avoid, why should my GI give up when I never will?

I can tell you this much as well, if I had cancer, they wouldn't call "slower than usual" growth of the tumor "remission"...

 

[monroe]

I can tell you this much as well, if I had cancer, they wouldn't call "slower than usual" growth of the tumor "remission"...

Completely agree with everything you said. I love my doctor for the simple reason that when I tell him that any symptoms are still present, whether weak or not, he still works with me until we can figure a way to be completely into remission. I don't think that food causes Crohn's ..but I think certain foods you eat can bring on flares because of the irritation it causes.

 

[mmarsell]

The trickiest thing I've found is that one day I can eat something and be fine, but having the same food another time will glue me to the toilet for hours. The only thing I'm sure bothers me is dairy. Other than that it's a crapshoot. Sometimes even mild food like miso soup or bananas will wreck me.

 

[soupdragon69]

mmarsell,

Maybe it depends on the level of inflammation you have going on at the time? Just a thought... it's something I have been monitoring myself and finding it seems to be true.

In general guys my gastro team strongly believe diet plays a big part in helping crohns patients to recover and absorb hence they promote elemental diets too and the LOFFLEX that was devised by them. Their gastro dietitians play a big part in supporting us too and I can email mine at any time as well as organising a clinica appointment that runs in tandem with my other appointments so I dont have extra trips. Each day I realise how lucky I am to have such excellent support and help with the medical and other teams I see and just wish everyone could benefit too!