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Post-surgery update and the problem of food

My son had surgery in September to remove a stricture at the end of the small intestine. He's had a difficult case that's never reached a full remission, and the stricture had most likely been there for years. All of the obviously inflamed part was removed, and he recovered quickly from the surgery.

The history is long and I won't get into it all here, but one thing we've always noticed is that many foods seem to provoke inflammation, even while on biologics. As a result, he's been on an exclusive or near-exclusive formula diet for most of the last 2.5+ years. Shortly before the surgery he had received an NG tube and was getting a semi-elemental formula, which seemed to do wonders for his symptoms at the time compared to the polymeric formula he had been having.

He kept the tube for another 6 to 8 weeks after the surgery, but we were all hopeful that he could start having more food and shift to using the formula as a supplement. Even a couple of weeks after the surgery we started to give him a little bit of food. A month after surgery he had a normal CRP and ESR, and since things were going well more food was added to his diet and eventually the tube was taken out, with the idea that he would still drink 3 or 4 bottles of polymeric formula a day.

Well it wasn't long after the tube was out and he was having more of his favorite foods like steak and homemade pizza that he started to get substantial diarrhea (maybe 3-5 times a day). We persisted with foods for a few weeks and started to bump up the formula quantities, but the diarrhea continued.

We realized that food wasn't really working out, and even shifting formula quantities up to about 80% didn't seem like it was helping much. He got a blood test, and his ESR was up to 22. So we went back to 100% formula, and we got a sample of drinkable semi-elemental formula (Pediasure Peptide). Within a week of going back to 100% formula--and one day after starting on all-Peptide--the diarrhea stopped.

Since then he's had his longest period of actually solid poops in at least a year and a half--over two weeks.

One thing I think is particularly notable about all this: 50% formula may not be that much better than zero formula, and 80% formula seems to be similar to 50%. However, 100% formula seems to be a completely different situation. This implies there's something in particular in the food that, even in small quantities, is causing a problem.

Overall, there's some good and some bad here. On the one hand, we've unfortunately learned again about just how strongly food provokes inflammation. On the other hand, the current status is finally looking good aside from not being able to eat ordinary foods.

I don't know how he's going to be able to both eat and have no inflammation given how extreme this reaction to food is. I'm not sure any biologics can effectively fight that, but stelara is most likely on the agenda anyway. I wonder if we can figure out exactly what it is in foods that's causing the problem. Is it like an allergy/multiple allergies to some common components of many foods? Is it some kind of digestive enzyme insufficiency?

I get the impression that even the doctors aren't used to seeing this strong a reaction to foods. Is this similar to anyone's experience here?
Our experience with 100% formula isn't as extensive as yours but we definitely noticed that adding any food after EEN did trigger the inflammatory response.
We followed 6 weeks EEN at one point with strict SCD diet and still had the same thing happen.
I guess there is the difficult option of adding one food at a time and keeping a journal of what seems not to trigger the response.
We did not do that because H didn't have an immediate response like diarrhea. Her response was apparent on lab results which was a month to month situation.

my little penguin

Staff member
When Ds was first dx at 7
We did semi elemental- peptamen jr
His vomiting and weight loss stopped
As soon as we added back food
Despite 6-mp -vomiting started again
Unless he was on steriods
Was placed on remicade
All vomiting stopped even within a few weeks
Fast forward a few years while on humira
Diarrhea started (puberty was blamed )
Peptamen jr was continued the whole time as supplement.
Even 100% formula only did not stop it
Only npo
Switched to Elemental formula 100%
Diarrhea stopped
Waited 6 weeks
Added one food at a time similar to an infant for 3-5 days
Followed cced as a guide of which foods to add
slowly lowered formula to supplemental again
Switched to Stelara
No longer on formula
Using carnation instant breakfast and he eats anything (organic and minimally processed as much as possible)
No issues at all at 17
So what foods caused issues changed with age and stages

was his TI removed ??
Most have issues with diarrhea when it’s taken out ...


Well-known member
Is he on maintenance med? Without maintenance meds pretty much every kid I know who has transitioned from EEN to regular eating has flared. EEN is great at knocking down inflammation but you need a plan for after. Recently T did a 6 week course of EEN that brought her inflammation down considerably but once EEN was over and without adjusting her meds she went right back to her prior inflammatory numbers.

From what I have read here, steak is a tough one for most people with strictures/anastomosis sites. Red meat in general is a pro inflammatory food also but I am sure there is more to his inflammation then just the fact he ate some steak. Are you working with an R.D. specializing in gastro diseases?
Yes, the ileocecal valve was taken out. Probably under 6 cm total was removed. I figured he might have permanently squishy poops now due to the surgery, but the poops recently have looked quite normal (while on all formula). I suspect his labs would look better now, as in October just before he had a lot more food.

One issue with my son and food is that he's always been *extremely* picky (although he's getting a bit better about trying foods recently), so following any particular diet is not necessarily possible. All-formula is mostly ok, but he would really like pizza and meat--foods which may not be viable for him.

He's currently not on any meds because of the surgery and the fact that nothing has really worked yet. We're planning what to do next now. I figure we'll see what the labs look like after a few weeks of all-peptide, then we'll probably try Stelara and continue on peptide, then we'll start trying foods again to see if Stelara allows that.

my little penguin

Staff member
Even when meds work
He has a Gi disease and no TI
So hard to digest foods (red meat , high fiber etc..)
May always be off the list
Agree you need a med
Stopping een (which acts as a steriod) means your using it as a med
Transitioning from een after years means slow transition even for picky eaters
Soups first
Then chunky soups
Then bland rice /chicken
The gut needs time to work again
Formula especially peptide abd elemental has very little by product waste
Which means the gut doesn’t need to do much work
Most nornal kids on elemental formula only tend to have constipation
So without a ti it makes sense he is having formed stool on formula only

my little penguin

Staff member
Have you had him talk to a psychologist?
Given he is going through a lot
And only eats certain foods even though others would be easier on his gut
It’s a lot for a kiddo to take in
Most kiddie Gi clinics have a medical coping psychologist on staff simple because these kiddos need to discuss things other than mom or dad
And they want to control things since their bodies are do out of control

I have one extremely picky kiddo (non Ibd)
So I get what your up against
Maybe let him pick the recipe
Abd learn to make it himself
Could be a texture issue ..
Definitely see psychologist
They can help a lot on all fronts
MLP, yes, we've tried that and they haven't been useful at all. But I think you're missing the point of this thread, which is about the effect of food on inflammation.

What we'd really like to know is exactly why food is causing such an inflammatory response. It's almost like Celiac disease but instead of gluten the sensitivity is to some unknown and more common components of food.


Well-known member
I don't think the food is causing the disease as much as you stopping what was treating the disease, the EEN. EEN reduces inflammation but when you stop it and start eating normally and without any other maintenance med, inflammation will return. IT happens to every kid on here. Happened to T recently and she was on a maintenance med but GI put her on EEN to reduce inflammation. It worked and he gave her the green light to reintroduce food but without increasing the med that wasn't holding the disease to begin with, inflammation returned.

my little penguin

Staff member
Yeah that ^^^^
study after study shows with een it reduces inflammation until you re introduce solid food
Unless your on a maintenance med
That’s a given
Sometimes surgery puts folks in remission
Sometimes it doesn’t
Given his inflammatory markers decrease with een
And increase on food
The een is treating the inflammation
It’s not a specific food causing the inflammation
If he was on a maintenance med that was treating the inflammation that would be different

there are studies where some kids-only respond to 100% een to stop the inflammation when they are not on any other meds
You add other meds then the inflammation is gone when you introduce food

second our Gi was very strict in reintroducing food after 2 months of een with low residue
Please have your Gi talk to your child on the importance of re introducing slowly once you get a new med on board

also realize Stelara takes 8 months to work so until then you need bridge therapy
Either steriods or een to keep the inflammation down
We could equally ask, what is it about EEN that makes it work? Here's an interesting recent paper on that subject, which mostly just dispels some myths about certain food additives being a problem but doesn't really answer the question: https://onlinelibrary.wiley.com/doi/10.1111/apt.15695

In general the studies imply that it's not so much what's in the EEN that's helping as something harmful (for Crohn’s patients at least) and unknown from the food that's being avoided.

Of course gluten doesn't *cause* celiac disease exactly, but eliminating all gluten can result in total remission. I'm wondering if there's something similar in food that's resulting in Crohn’s inflammation in a similar way.


Staff member
My son did EEN and then PEN for a number of years. Also very picky eater. However, he didn't have surgery and, of course, everyone's disease is different. So, FWIW, I can share what we did but it may not be helpful as the intensity of their disease sounds different. I don't know how old your son is but I agree with MLP in that things can change at different ages/stages. My son was almost 17 and quite physically mature (shaving, etc.) when diagnosed so already past most puberty-related changes.

At dx, he had inflammation mostly in small intestine and TI but also had patches in colon and duodenum. His treatment was EEN for six weeks. He used NG tube nightly, 3000 cal/night. He used an elemental formula (Tolerex by Nestle). After six weeks, he was to continue with his formula at 1/2 dose, 5 nights per week. After a reintro diet, he was allowed to eat any foods, any quantity (no one ever mentioned 50%, 80%, etc.). His only restrictions were corn, seeds, etc. I don't remember exactly how the reintro diet went, I think it was initially breads, pasta, rice, etc for a few days/one week, then 'light' proteins like chicken, fish, eggs for another week, then maybe? dairy, then everything else (if you want the exact diet, let me know because it's been years, so I'm a bit vague on the diet).

He did not have issues with many foods, after the reintro. He also liked steaks and pizza and was ok with them. His only med was nexium on the 5 nights with NG tube (the tube left the 'flap' open and he'd get acid reflux at night). We continued with this for 2+ years.

This was about 8 years ago... he had some minor symptoms, I think there were a few foods that disagreed with him, he had a bit of pain here and there, sometimes a bit of diarrhea but it was never anything major. So, clinically, he was good. He'd gained weight, looked great, felt good.

But, MRI's showed continued inflammation (especially as time passed from when he was on 'exclusive'). By the time he was transferred to an adult GI, 1.5 years after dx, his adult GI did scope and MRE (I think there was 30 cm of inflammation at this point) and said he was not comfortable with the amount of inflammation and put him on remicade.

While I can't say why or how, I do believe the 5 nights/week of EN was instrumental in keeping things under control. He always (then and now) disliked most fruits and veggies, so when I say he ate 'anything', his diet has always consisted more of carbs and proteins (which may be why he was able to transition to foods with fewer problems). To get fruits/veg in him, he would eat a couple of types of pureed soups. I was able to puree all kinds of stuff into the soups! lol I had to be inventive too... mashed potato was made with lots of mashed cauliflower (way before it was trendy!), shepherd's pie had pureed carrots in ground beef, etc. But, of course, when you need to 'hide' it, the amount is limited. (Jessica Seinfeld had a couple of good recipe books on how to hide veggies in foods - called Deceptively Delicious, I think)

As far as the amount of food, he still ate 3 meals a day. He'd skip breakfast because he'd say he felt 'full' when waking from ingesting 1500 cal overnight, but he'd have lunch, dinner and then a pretty full (meal size) snack at about 9pm. I never tracked calories between food and formula because no one had ever mentioned anything about 50/50 or 80/20.

When he went away to school, he didn't want to take the NG tube, pump, etc. plus as he was already on remicade, I couldn't really push him to continue with the formula. But, as I really did believe he needed the nutrients (ie picky diet) and strongly believed the formulas helped him, he agreed to drink 2-3 Boost shakes a day at university. He continued with this for 4 or 5 more years. Even today, at 26 years, he still drinks the shakes regularly (he just asked me to pick up a couple of cases for him from Costco today). I always thought the nutrition he gained from the shakes helped keep him 'healthy' and the more calories he got from the shakes probably caused him to eat a bit less?? thereby lessening the workload on his intestines. No scientific backing on this, just my 'mom' feelings. :)

IDK if any of this helps?? If you have any questions, I'm happy to answer them.