EEN makes things worse - any advice?

[Andersen007]

Hi!
Some of you know my journey and struggles already, but I thought I make a clear post about it, in the hopes of someone being able to offer guidance, or professional I could turn to.

28 year old male, diagnosed with ileal Crohn's 2022 December, at that point colonoscopy findings as well as symptoms were mild, seemingly only in the terminal ileum, at least based on ileocolonoscopy + MRE + symptoms. I also have celiac disease since 16 years, that is well controlled and the blood tests and biopsy confirmed everything good in duodenum. Calpro was 450. Everything in blood work was fine including markers of inflammation and malnutrition.

My symptoms on diagnosis were 4-5 stools per day, always liquid, and odd pains few times per week, but nothing really bad. I have immediately started to look into diet and lifestyle changes, and had the following:
-tried Pediasure and Ensure formulas as PEN next to CDED - symptoms improved somewhat but Calpro increased up to 800 and I still had liquidish diarrhea from time to time.
-tried Modulen as PEN, then EEN - the point I went EEN on it, after a few days I was very visibly sick, had liquid diarrhea 4-5 times again, and calpro was 1200
-went on SCD diet, excluded further foods so made it almost keto, and basically was eating a very monotonous diet - calpro went down to 130, and I had stools once per day typically quite solid, Bristol 4-5, recovered a lot of weight, so clearly I was reacting very positively to nutritional changes
-I cheated on the diet on my wedding, Calpro skyrocketed again to 1600
-trying to address the inflammation, again I thought I will try EEN - I tried Fortisip, got somewhat worse, so instead I switched to Elemental 028 which doesn't have any intact proteins that could cause allergies, again I have gone into a much worse flare, my eyes went bloody 2-3 days after starting consistent with episcleritis, had liquid diarrhea 4-5 times per day, I didn't feel great and according to people around me looked really sick
-going back to SCD keto-like brought calpro back down to 260 but couldn't bring it below, stools went back to 1-2x per day, not liquid but looser than a healthy person
-I thought I probably just have issues with maltodextrin, so I got some Kate Farms ordered from the US, I took 1 yesterday, 2 today, and again its the same story - I am having liquid diarrhea, already 3 times, concerned to get into a flare again if I continue

So basically, I tried pretty much all formulas under the sun, there is not even an overlap in ingredients, Kate Farms is organic, plant based, E028 doesnt even have intact proteins, Modulen uses corn syrup, etc etc carbohydrate sources are different etc. My concern is not that these things dont improve my condition. My concern is that they make it explicitly worse, every time, and I cannot make sense of why. I haven't read anything like this in any studies. And clearly nutrition plays a critical role in my disease as I respond to what I eat very intensely both positively and negatively. I cannot make any sense of this, and I am even concerned I might have a different disease altogether. And my staple diet on EEN included a lot of meat, eggs, and almonds, so quite a lot of fat. Even though I do have issue with eating too many almonds at once, it also didn't feel like the fat would be the problem, given I ate 12 eggs per day and was very happy on them.

I tried to ask my IBD specialist, but he said he is not knowledgeable about nutrition, and basically pushing me to go on biologics. I will have an MRE and compare with 1 year ago, to see if there is damage there that would justify this. But I am even more sceptical because of how differently I seem to react to this.

Anyone has any idea whatsoever about what might be behind this, what I could do, and if there is a professional anywhere in the world specialising on Crohn's who could advise? At this point I am even contemplating just trying it ingredient by ingredient, make a shake, and see my reaction. My impression is any carbohydrates and any fiber is making things worse. So most likely I will try carnivore.

Thanks!

 

[ncman]

Hi. Honestly, I know of no current professionals who will advise on nutrition, but the link between diet as a treatment and CD is well established.

And my staple diet on EEN included a lot of meat, eggs, and almonds, so quite a lot of fat.

I've read your post, but note you've stated the above - were you not doing the elemental shakes on their own? i.e did you continue to eat whilst doing the shakes?

The only other thing that comes to mind is the change in osmotic pressure (i.e. solid foods to liquid), and that your guts are taking time to adjust to the change - maybe continue for longer, or try a semi-elemental formula?

 

[my little penguin]

So all your formulas were semi elemental or polymeric except e028 .
Just like steriods een takes time
You wouldn’t expect steriods to work over night een is the same
Weeks before it gets better and you get diarrhea
Liquid in equals liquid out
Additionally een is no solid foods only formula and water
E028 is made for little kids and is not complete nutrition for adults
Organic or not does not mean much for healing the gut .

to determine if een is working
No other food or drink just formula
For 6-8 weeks
Vionex is elemental for adults
Elemental means less waste so constipation can be an issue
Abbott
Nestle
Nutrica are the big three for formula including elemental
All have stores online
My kiddo did een 2-3 times

 

[Maya142]

My daughter did EEN for 4 months and she used Vivonex. It was very hard on her. She did have semi-formed or liquid stools for that time - her GI said it really varies based on the person. When you're doing EEN, you typically do 100% formula and no food at all. That is what my daughter did. Some studies with kids have shown that 90% formula and 10% food works nearly as well or as well to induce remission. That makes it easier for kids to do. But most GIs tell their patients what to eat in those cases. It's usually very plain, bland food - chicken or fish, no red meat, rice, potatoes etc.

Also, not every person responds to EEN. Some people require steroids. Some require steroids AND EEN. I would encourage you to do this WITH your GI, not just by yourself. Most GI departments have a dietician or nutritionist. And EEN is generally only used to induce remission - at the same time, a maintenance medication is started to help keep the IBD in remission. The current thinking is to start patients on meds to prevent damage from occurring, rather than starting meds once damage has already occurred. Once there is scar tissue and a stricture forms, for example, meds won't help as much as they would when there's inflammation but no scar tissue.

 

[Andersen007]

Thanks everyone for your responses. I did a typo above - I wanted to say that my staple diet when NOT on EEN included a lot of fat (the one that worked).

For those of you who mentioned your kid did EEN and had liquid stools most of the time, how long did it last? One thing is liquid stools but I feel like way more liquid comes out than it should and it went up to 4-5 times per day instead of my normal 1-2, and I feel quite shit too, after 2-3 days, even though I actually love the taste. I am simply too scared to carry on longer because I feel like it might be putting me into a flare, because normally I am in clinical remission with some level of residual inflammation as per calpro.

In reality I only tried Modulen and E028 as exclusive nutrition, the rest I added to my diet gradually to see my tolerance and when a very low threshold was reached I just started to have liquid stools all over. My calpro seemed to have gone up in both of those EEN cases, although I got scared and stopped at around day 4. It took a long time to normalize after with my usual SCD diet. So maybe I didnt wait long enough and I should soldiet through 2 weeks and only measure after, and this increased stool frequency and them being totally liquid is kind of normal? I also had some pain / cramping that I dont normally have, and urgency, which is also very rare for me.

Unfortunately our GI dept does not believe in EEN for adults and there is no alternative as I live on an island. He also said there is 9 months waiting list to a dietatitian. But maybe you can advise me - my suspicion is related to what one of you said, I think I have issues with liquids, period. I seem to for example do much better on simple grilled meat vs chicken broth. Did any of you try to cook something more solid from EEN, and do you think it could make sense? E.g. With gelatin, or maybe fry it with some eggs. I know adding extra ingredients is not great, but maybe my real issue is with the liquid itself and an extra ingredient that I know I can tolerate could help.

 

[ncman]

EEN for adults is a totally valid approach - I've done it more than once as sole treatment.

2-3 weeks is the length of time I'd spent on it, and I used E028 - no solid food as it takes away from the purpose of EEN.
EEN won't put you into a flare - unless you are reacting to any of the ingredients in the shakes.
The change in osmotic presssure is rough (pain, cramps etc.) - trust the process!

I didn't test calpro during it, but essentially you should see a downward trend following EEN - it won't go 'normal' striaght away, it'll take weeks/months. Any 'spikes' will be in reactions to foods you're eating when reintroducing solid food after EEN -

 

[Maya142]

My daughter did supplemental EN to gain weight first and because she was malnourished (it was like 60% formula, 40% food). So the first time she did it, she did feeds overnight with an NG tube (she inserted the tube every night, did the feeds while sleeping and pulled the tube out in the morning so she didn't have to go to school with it). She was told that it would take her body several weeks to adjust to the formula and it was normal to have diarrhea in the beginning (despite the fact that she was also eating during the day). In her case, after a month she still had diarrhea, so her GI switched her formula to from a semi-elemental formula (Peptamen) to an elemental formula (Neocate). That worked - her stool became soft or semi-formed (if I'm remembering correctly).

When she was later on 100% elemental formula several years later (Vivonex) she had loose stools, but not totally liquid diarrhea (usually - sometimes she did). She was allowed to drink broth and water, of course, so she was just getting a lot of liquid. When we added food back, they became more formed.

For kids/teens/young adults EEN is recommended for 6-8 weeks to induce remission. If you do it for 4 days, it's really not going to do anything and your body has no chance to get used to the formula.

We were told that you are not supposed to cook/heat or freeze EEN - that makes it lose nutrients.

 

[MrWheat]

My worry is with EEN will it set off my corn intolerance from the malodextrin?

 

[kiny]

It's the protein in maize that cause a reaction, not the starch. People with a corn allergy can consume maltodextrin made from corn starch no problem.

The maltodextrin in EN is not resistant maltodextrin, they're glucose syrups with a high DE, they don't look anything like starches anymore. The maltodextrins in EN, which are really glucose syrups (corn starch that has gone through a lenghthier hydrolysis process than most maltodextrin) are the closest thing to dextrose tablets you can consume, it gets taken up just as fast.

EN is designed to be hypoallergenic.

The reason why EN works so wonderfully for crohn's disease is likely because it gets readily absorbed and has a fast transit time through the small intestine, which deprives pathogens of nutrients and avoids any food intolerances. EN doesn't work nearly as well for colonic disease and doesn't work at all for UC. It works extremely well for SIBO though, not surprisingly.

 

[kiny]

To avoid any confusion you can just call the maltodextrin in EN glucose syrups. Several EN will say they contain glucose syrup, instead of maltodextrin.

What type of maltodextrin is created depends on how long the hydrolysis process takes. Glucose syrups go through a lengthy process that causes its sweet taste. Many countries have no set-in-stone rules when something should be called maltodextrin and when it is a glucose syrup, it's arbitrary, you would have to set DE equivalence limits.

You also have resistant maltodextrins, which are nothing like the type of maltodextrin found in EN.

When something says "maltodextrin" on a food label, you have no idea what it is because maltodextrin is not well defined. Your only clue is the taste, but you have no way of really knowing what it is unless you contact the manufacturer.

 

[Andersen007]

btw @kiny if the main EN principle is ensuring good nutrition status of the patient + depriving ileal pathogens nutrition in parallel, wouldn't we expect a truly row residue diet, like lion's diet, or chicken breast + salmon + eggs + lactose (and carb) free cheese type of diet, to be similarly effective? I am trying something like this, and feel so much better than I did on EN - but no calro measurement yet.

Well, to be fair I am also taking smooth 100% peanut butter too which has some fiber, so gonna try it with and without, and measure calpro in both cases - but my stool frequency and consistency has improved considerably after adding in some fiber.

 

[kiny]

We need a certain amount of carbohydrates for daily energy needs, there's no way around this.

Protein can be broken down for fat storage and even glucose needs, but the ability of the liver to do this is very limited. Excess nitrogen from excess protein intake is very harmful for the liver.

Pathogens naturally prefer carbohydrates for their energy needs too.

Fats are poorly absorbed. MCT in EN are more easily absorbed, but again, saturated fats can not be taken in excess.



If you break down the share of macronutrients in EN, they are pretty similar to a normal diet.

EN however does differ from normal diets in other ways.

-EN is taken as a liquid. This impacts transit times through the small intestine.

-EN's carbohydrate content is largely made up of glucose syrup. This avoids undigested starch content which pathogens would otherwise feed on.

-A much larger share of EN's fat content is made up of MCT, compared to a normal diet, which increases fat absorption.

-EN largely lacks any fiber.

-EN tends to have excess growth factors compared to a normal diet, due to the way protein is processed.

-EN corrects nutritional defficiencies. EN might also create minor defficiencies when it comes to choline and potassium, but they are minor and easily remedied.

-EN is hypoallergenic. While I don't believe people with crohn's disease have classical food allergies, we do have an abnormal number of circulating antibodies against baker's yeast (ASCA), often lactose, wheat, etc. Instead of an allergy, crohn's disease patients have so-called food sensitivities, or food intolerances. No one agrees how relevant these are.

 

[kiny]

Most diets recommended for crohn's disease largely try to mimic EN.

Low residue, SCD and low FODMAP diets all have the effect that undigested starches are limited.

LOFFLEX diets limit hard to digest fats and fiber.

Note that all these diets, including EN, aggressively limit resistant starch / fiber.

I have made several arguments showing that fiber intake in countries with high incidence of crohn's disease is not low, but often higher than normal. I do not agree with theories that high fiber intake would be protective for crohn's disease, several European studies have shown this is simply not the case, and a multitude of studies have shown potential harm in high fiber intake for crohn's disease patients.

These diets all simulate EN. They just aren't as stringent, they are not taken in as a liquid and they are not fully hypoallergenic. This likely explains why they are not as effective as EN, but likely helpful still.


1512×2011
1,2 MB
1512×2011
1,2 MB

 

[Andersen007]

So I have ran a new experiment with exclusive EN given I have ileal Crohn's - Modulen, trying to see if I react better to it then last time. From all the formulas I have tried (and there were elementals too) my gut seemed to have tolerated Modulen the most so I thought I will go with that. Previously when I did it for a week I had 5-6 liquid stools per day, so I thought to trick my system and prepare it with gelatin so perhaps that slows digestion down a bit instead of running through me. So I thought this might calm things down + tbh I was missing some sweet taste and the texture is pretty good, like pudding. Or, like any other taste than what I eat every day.

But weird things happened.

Day 0: I am on a homemade EEN type of diet thats soft soup made of boiled chicken breast, squash, papaya, peanut butter, olive oil, and some other stuff - having 1-2 stools per day and the second one is more and more often Bristol 5-6 so I thought I may not be heading to a good direction. I take baseline calpro measurement and it later comes back as 210, which for me is considered around my baseline "non-inflamed" level.
Day 1-7: I go to toilet around 3x per day. Totally liquid, but no other complaint.
Day 5: I develop an oral ulcer that is "fucking shit" painful, at the side of my throat. I never had an ulcer like this in the past.
Day 7: Take another calpro - later comes back as 290 - not too worried still when I saw this as I assume having it fully liquid without much residuals even with same level of inflammation could cause the number to fluctuate quite a bit.
Day 7-14: The oral ulcer is super bad. It's the size of my little finger nails. I run out of Modulen and go for Ensure for 3-4 days until I can get new ones. I get bad bloating from it and cant wait to get Modulen. I take diclofenac 1-2x per day and spray the ulcer with some alcoholic + lidocain + whatever spray that helps it a bit. Have really bad pain when my tongue moves i.e. talking, and pain radiates to my ear. I also work out once that spoiler alert, does not help to calm things down.
Day 14: I stop Modulen and already eat my previous safe food in the evening. Still the same stool pattern, liquid 3x per day. But it was quite explosive on those Ensure days Main reason to stop was the ulcer and also the pharmacy refused to sell me more saying its unsafe to stay on EEN for longer than a few days.
Day 15: I take another calpro, that after many days, I have received the results for, and came back at 490.
Day 17: Ulcer is basically fully healed and not painful.

Anyone can make any sense of this? I am thinking of repeating the experiment some later time in a less stupid way, like, not taking NSAID-s, switching formulas, etc, but perhaps its a dumb decision. What do you think:
1. Could the sudden appearance of oral ulcer be related to the poor oral hygiene rather than Crohn's symptom? Basically I haven't had this much sugar added together in my last 1 year, that I had this 2 weeks. Why I tend to think this is because clearly my inflammation is still there while my ulcer isn't. And I had calpro of 2000+ in the past, and no such problems.
2. Could the Ensure formula that didnt fit with me, or the NSAID-s I took to relieve pain (paracetamol did jack shit), or perhaps even this ulcer have altered the result to this extent?
3. Is there even a point in me retrying EEN at a future date, once I have at least 3 weeks supply? Or should I just accept EEN is not for me?

 

[my little penguin]

Een is not effective in 2 weeks
It takes 6 to 8 weeks to do anything
There is nothing special about a specific type of formula including modulen
Modulen is the same as peptamen both are semi elemental from nestle
You can order it from the nestle nutrition store in the US
https://www.nestlenutritionstore.com/shop-by-brands/peptamen.htmlKate farms
And nestle complete both have blended (whole food ) shakes
Fecal caloprotectin take months to go down
200 is not normal
Below 50 is normal and achievable
Mouth ulcers can be from crohns
Stress
Sweets syndrome
Or nsaids
NSAIDs alone could increase your fecal cal and cause bleeding in your gut
My kiddo takes Celebrex daily for juvenile arthritis
Scopes are clean and fecal cal is less than 15
That said he has a limit above a certain dose bleeding and abdominal pain starts

other nsaid and his gut is a mess

the first week or two of een is horrid
It can’t fix the gut the fast
Similar to pred it takes time

what other meds are you taking ?
when was your last scopes /imaging ?

Een works but not if inflammation or damage is severe
If the colon is inflamed
Then less likely to work
If your not taking other meds odds are een is not enough to get things inline by itself

 

[Andersen007]

Een is not effective in 2 weeks
It takes 6 to 8 weeks to do anything
There is nothing special about a specific type of formula including modulen
Modulen is the same as peptamen both are semi elemental from nestle
You can order it from the nestle nutrition store in the US
https://www.nestlenutritionstore.com/shop-by-brands/peptamen.htmlKate farms
And nestle complete both have blended (whole food ) shakes
Fecal caloprotectin take months to go down
200 is not normal
Below 50 is normal and achievable
Mouth ulcers can be from crohns
Stress
Sweets syndrome
Or nsaids
NSAIDs alone could increase your fecal cal and cause bleeding in your gut
My kiddo takes Celebrex daily for juvenile arthritis
Scopes are clean and fecal cal is less than 15
That said he has a limit above a certain dose bleeding and abdominal pain starts

other nsaid and his gut is a mess

the first week or two of een is horrid
It can’t fix the gut the fast
Similar to pred it takes time

what other meds are you taking ?
when was your last scopes /imaging ?

Een works but not if inflammation or damage is severe
If the colon is inflamed
Then less likely to work
If your not taking other meds odds are een is not enough to get things inline by itself

Thanks for your response and experience!

Unfortunately (from this POV) I am living in EU so Peptamen is not accessible, I could get my hands on Kate Farms but it gave really bad pain and diarrhea. Nestlé Compleat worked beautifully for me, but unfortunately, despite going to GREAT lengths, I am unable to ship it here from the US anymore and no similar solutions exist either. It had such a positive effect on me that I am going to pre-order it for my 3 week honeymoon to the US for this autumn.

My calpro is typically 150-200 when I am in my happy place, IBD GI said thats all right, and I check on my own quite often. When I was diagnosed it was 600ish and was still only 2 small ulcers in TI and colon nothing. It does go up 1000+ whenever I "cheat" so I dont really do that anymore. I was never on any medication. With that said diagnosis, and related MRE + colonoscopy was 18 months ago and I was able to convince doc to do MRE again which is scheduled in 3 weeks time. He did suggest anti-tnf more to give me my social life back, but I didn't say yes yet, mostly due to my ileal phenotype + more importantly, I didn't yet get confirmation that we would do therapeutic drug monitoring, as I have a gene phenotype that makes me highly likely for a secondary loss of response to anti-tnf-s. So strategically as I see it TDM is becoming more and more accepted approach for this gene type, it's better for me to wait a bit especially until disease is more or less controlled, rather than to create resistance to an important drug that I could otherwise potentially take for many years otherwise. And it does not seem like starting with another biologic would be an option. I wrote about it here:
https://crohnsforum.com/threads/therapeutic-drug-monitoring-in-anti-tnfs.87522/#post-1055188

 

[my little penguin]

So your on no meds
My child has had crohns for 13 years .
He is an adult now
Nice pink healthy intestine on last scopes

Yes you can lose response but there are plenty of meds
My kiddo has been on remicade (8 months) but had two allergic reactions (severely allergic kiddo so expected )
Humira plus mtx for 5 years
Currently on Stelara for years .
My point is you can go by the what if and not take any meds while damage is being done
Yes some Gi do accept a 200 fecal cal
But that means inflammation is simmering doing damage
Damage can’t be undone
Studies especially small ones never tell the individual story.

take meds
Avoiding meds doesn’t help stop damage .

 

[Guerrero]

I dont really understand why you want to put conditions or “therapeutic monitoring” on a medication that could help you feel better. If you loose response you can switch to another option.

 

[Crohn2357]

But that means inflammation is simmering doing damage
Damage can’t be undone
Studies especially small ones never tell the individual story.

take meds
Avoiding meds doesn’t help stop damage .

This. Take the meds.

 

[Andersen007]

I dont really understand why you want to put conditions or “therapeutic monitoring” on a medication that could help you feel better. If you loose response you can switch to another option.

each of us has a limited time until the current meds will work, and we dont know in advance if its 2 years or 50 years - none us can know this in advance - I have talked with more than a plenty cases in different diet groups online who have exhausted all their treatment options, and then its REALLY only diet + surgery that can be done - and at that point they are forced to do it, and have no backup options, no choice, and it scares the shit out of me!

with my gene mutation (which btw isnt very uncommon, 25-30% of people have it, its just that the relationship with anti tnfs has only recently been discovered), there is a 70%+ chance that it wont work after 1 year, and there is basically only a mathematical chance it will work after 2 years

not only wont work, but because of the antibodies, will never work again - I think going by "what-ifs" as "my little penguin" suggested would be to go for an anti-tnf knowing this

so, essentially very likely I would exhaust anti tnfs in max 4 years, but more likely 2, while I would have the chance of having them work for 20+ if they proactively monitor and dose escalate in the early days - and there is a good chance this will be a possibility here in some time, or in another country where I could potentially move to

I genuinely think that knowing all this, its very reasonable for me to expect my doctor to do TDM to prevent or at least postpone early antibodies and lifelong loss of response, or put me on another biologic that is not an anti-tnf where I do not have such poor chances

yes there is also a good chance that low level inflammation in the meantime causes damage - but my calpro went from being 1500ish, to being 800ish, 500ish, and then for a long time, 200ish, consistently, by using dietary approaches and in the last months, homemade EEN, and also gave clinical remission for 90% of my last 1.5 years - so I think not unreasonable to expect that I could further reduce it more + a surgery scares me far less than throwing anti tnf as an option out for max 2 good years

I am not giving such a long explanation to justify my decisions, but esp. the last comments didn't feel like you would acknowledge that this is absolutely not a trivial choice to make and could potentially effect my next (hopefully) 50+ years very significantly both ways - and both approaches have their risks

in any case gonna do an MRE soon as mentioned, and see how Im doing inside and that might change my mind - or my doctor’s!

 

[Guerrero]

You are the best person to decide whether you want to start a treatment or not. Keep in mind there are now plenty more other treatments than anti tnf, and every year there are new ones.

 

[my little penguin]

Exactly that ^^^^^
it sounds like your having communication issues with your GI
More than anything
Can you get a second opinion ?
Then see if a switch is needed
Sometimes listening on the Gi part is all you need
Someone who is willing to discuss options