Elimination diet to achieve/maintain remission? Can anyone give any advice?

Hello,

I've posted on here before and have always received helpful replies so I thought I'd give this question a shot!

I was diagnosed with Crohn's 5 years ago and it has been a battle every step of the way. Last November I had my first bowel resection (1 foot of intestines taken) and had a temporary ostomy for 3 months, then was re-connected in February of this year. Shortly after I began Entyvio, which I'm still on today.

Shortly after being "re-connected" I began on the SCD diet for several months (I think 4?). I had read good things about it and after the hell of surgery I was willing to do anything to avoid it again. I didn't eat any processed foods, refined sugar or carbs for those months and I didn't experience any symptoms (except occasional diarrhea which is normal post-surgery)...but it's impossible to tell if that was due to the diet, the remission achieved through surgery, or Entyvio.

Well long story short I fell off the diet (I've struggled with food addiction and binge eating disorder for years) and started eating my crap standard Western diet again. A few months ago I had what I believe was a brief (week long or so) flare after eating an avocado which led to me having to go to a rice and bread only diet. After that my symptoms went away and I resumed eating as normal.

Now I'm starting to feel poorly again--diarrhea, stomach pain, cold and feverish, possible sores in my mouth--and I'm scared that I'm flaring again. I just moved to a new city and will soon be seeing a new gastroenterologist, so I'm looking forward to that, but in the meantime I want to seek some advice about what steps I can take concerning diet.

I know there's a ton of conflicting information about the role of diet in Crohn's. My doctor always told me that the food we eat has nothing to do with it, which I find hard to believe. After all, my older brother, who also has Crohn's, got surgery around 5 years ago and has maintained remission by eating a very strict diet and avoiding all the foods that cause him problems. And I've read many other anecdotal accounts, as well as some research concerning the effect of diet on Crohn's.

I understand that each person is very different, and it might not help everyone, but I also think that surely the food we eat has to have SOME connection to our gut health, and at any rate I'm willing to try anything if it gives me a better chance to avoid ever having to get surgery again.

So my question is--has anyone else had any success with using a diet to control their Crohn's? I guess I'm really just not sure where to start because there are so many different diets and all of them have people claiming they do/don't help. To be honest I did find the SCD diet very restrictive, which I do think eventually triggered my eating disordered past with bingeing/restriction. However I would overcome this obstacle if it would allow me to maintain remission for as long as possible.

Would seeing a dietician that identifies food sensitivies be of any help? Or should I just do some trial and error with different foods on my own? I guess I'm just asking if anyone has any advice on where I should start with my diet approach from their own experience! I would love to read what has worked for others.

Anyways sorry for this post being all over the place and long...I hope you understand what I mean! Thank you to everyone who reads/responds! This disease feels so isolating and depressing; it's nice that there are others to talk to about it!

There are research studies on the SCD diet ongoing, but definitive results are not available at this point. Our micro biome is individual and complex. It is logical that foods and bacterial balance have something to do with Crohn's flares, but I don't think we know yet what that means for each individual and their diet. On top of that, there are foods that might cause stomach or bowel upset, but that doesn't mean it is making your actual Crohn's disease worse or better. Some people have severe damage going on in their intestines and their bowels feel fine while others might have irritable bowel symptoms but no real damage to their intestines.

I do think though that certain foods make us feel better or worse.....whether that translates into damage to the intestines is kind of unknown. The problem with food trackers is that it takes time after you eat to feel symptoms, and then you've eaten a bunch of other possibly offending foods in the meantime. The FODMAP diet (you can google it) is an elimination diet that takes away most offending foods, and then you slowly re-introduce different food types like dairy or gluten to see what bothers you. It is not a diet to cure you or stay on indefinitely. It is only a diet to help you discover what you are sensitive to. I discovered for myself that gluten doesn't bother me, but dairy does, for example.

Good luck with whatever you decide to do. If the SCD diet is triggering an eating disorder for you, then in my opinion it's probably not worth it. I don't think we know how to cure Crohn's with diet at this point.