Why isn't EEN a main treatment over prednisone?
- Thread starter wduk
- Start date
Help Support Crohn's Disease Forum:
- Joined
- Apr 15, 2012
- Messages
- 14,792
Not eating solid food is extremely difficult
Children are given een but they don’t realize they have a choice
Psychologically smelling food watching other eat food is very very hard
Add in your stomach was made to digest solid food
Your jaw needs to physically chew
When on een you get blood sugar spikes
You get bad breath /decaying teeth and probable liquid stool (liquid in equals liquid out )
My kiddo did een twice
Extremely difficult to do even at age 7 then again at age 12
watching others eat
most adults are lucky to make it 2-3 weeks without solid food
That’s why
If you can handle it
Go for it
But it’s not as simple as it sounds
Children are given een but they don’t realize they have a choice
Psychologically smelling food watching other eat food is very very hard
Add in your stomach was made to digest solid food
Your jaw needs to physically chew
When on een you get blood sugar spikes
You get bad breath /decaying teeth and probable liquid stool (liquid in equals liquid out )
My kiddo did een twice
Extremely difficult to do even at age 7 then again at age 12
watching others eat
most adults are lucky to make it 2-3 weeks without solid food
That’s why
If you can handle it
Go for it
But it’s not as simple as it sounds
- Joined
- Apr 15, 2012
- Messages
- 14,792
In order to get enough calories you need to physically drink the shakes all day long .(8 to 10 of them )
These contain a large amount of sugar since the main source of nutrition is sugar /fats(oils)
They coat the mouth /teeth /tongue
Chewing solid foods cause the mouth to produce saliva to protect the teeth that doesn’t happen as much with drinking
Kids on formula only for their other Gi issues have horrible teeth even with brushing due to this .
These contain a large amount of sugar since the main source of nutrition is sugar /fats(oils)
They coat the mouth /teeth /tongue
Chewing solid foods cause the mouth to produce saliva to protect the teeth that doesn’t happen as much with drinking
Kids on formula only for their other Gi issues have horrible teeth even with brushing due to this .
- Joined
- Apr 15, 2012
- Messages
- 14,792
honestly my kiddo drank peptamen jr for years
It’s very thick and sticky
When he drank it along with solid food not much of an issue
But as een
Big difference
This was with a straw
He also did the powder version of elemental formula (neocate jr )
Same issue
It just sticks
It’s very thick and sticky
When he drank it along with solid food not much of an issue
But as een
Big difference
This was with a straw
He also did the powder version of elemental formula (neocate jr )
Same issue
It just sticks
- Joined
- Apr 15, 2012
- Messages
- 14,792
Not against een mine did it twice
And partial een until he finished growing
Not sure as an adult he would agree to full een again
He also really despises steroids and pushes back when docs try to prescribe them
Since he developed secondary adrenal insufficiency
But after 12 years of this disease he has earned the right to decide what is best
And partial een until he finished growing
Not sure as an adult he would agree to full een again
He also really despises steroids and pushes back when docs try to prescribe them
Since he developed secondary adrenal insufficiency
But after 12 years of this disease he has earned the right to decide what is best
- Joined
- Jul 2, 2013
- Messages
- 6,750
Well, you can always do EEN with a feeding tube, to avoid the teeth issue.
That said, my daughter did EEN for 16 weeks and it was VERY hard on her. Hers was through a J tube (a tube in her jejunum because she has severe gastroparesis and so we had to bypass her stomach) so she had no food in her stomach and she was always hungry. We tried to grill outside as much as possible because even the smell of food made her hungry. I don’t think this would have been as much of an issue if she had been using a tube that went into her stomach like an NG tube or a G tube though.
She was in her early 20s when she did it and she found it so hard. She did supplemental EN as a teen and that was much easier but that works better for weight gain vs. inducing remission.
She did have osteopenia as a teen and gaining weight, physical therapy and supplemental formula helped correct that. Her bone density is normal now - low normal, but normal. Boys can gain bone density until their mid 20s I think (she was maybe 19 or 20 when it became normal) so your sons may be able to gain some bone density. In her case I think the osteopenia was caused by being so malnourished and underweight and steroids.
My daughter also HATES steroids - she had serious adrenal insufficiency which resulted in several scary trips to the ER for emergency hydrocortisone. She also got Cushing’s from steroids later on. But sometimes she has to be on them to protect her joints or her gut - they’re just a necessary evil.
But I still don’t think she’d do EEN again, now, as a young adult. It was just so hard.
That said, my daughter did EEN for 16 weeks and it was VERY hard on her. Hers was through a J tube (a tube in her jejunum because she has severe gastroparesis and so we had to bypass her stomach) so she had no food in her stomach and she was always hungry. We tried to grill outside as much as possible because even the smell of food made her hungry. I don’t think this would have been as much of an issue if she had been using a tube that went into her stomach like an NG tube or a G tube though.
She was in her early 20s when she did it and she found it so hard. She did supplemental EN as a teen and that was much easier but that works better for weight gain vs. inducing remission.
She did have osteopenia as a teen and gaining weight, physical therapy and supplemental formula helped correct that. Her bone density is normal now - low normal, but normal. Boys can gain bone density until their mid 20s I think (she was maybe 19 or 20 when it became normal) so your sons may be able to gain some bone density. In her case I think the osteopenia was caused by being so malnourished and underweight and steroids.
My daughter also HATES steroids - she had serious adrenal insufficiency which resulted in several scary trips to the ER for emergency hydrocortisone. She also got Cushing’s from steroids later on. But sometimes she has to be on them to protect her joints or her gut - they’re just a necessary evil.
But I still don’t think she’d do EEN again, now, as a young adult. It was just so hard.
- Joined
- Apr 15, 2012
- Messages
- 14,792
Interesting, i wonder if they could ever come up with a jelly or solid form of EEN for those who can still eat, such that it dissolves quickly in the stomach and not cause issues in the GI tract like regular food that would then quenches hunger and won't stick to teeth. Doesn't seem like any one really tried.
I am opting for a 12 week course of EEN instead of steroids. Mainly because i need to get the weight up, and theres research showing it improves gut biome diversity which i think is important and heavily under researched in IBD. For the jaw i guess i'll chew sugar free chewing gum all day.
Decaying teeth is probably my biggest concern, i will need to figure out a strategy to solve that.
- Joined
- Apr 15, 2012
- Messages
- 14,792
Tips for een
Crushed ice
Chew that with a sprinkle of table sugar (if allowed by Gi )
Gum has artificial sweeteners which can make diarrhea worse -check with Gi on that one
Some allow it some don’t
You can freeze peptamen ,boost etc to chew just don’t count it in the nutritional content for your day
Some Gi allow 10-20% solid food with een some don’t
Some permit dum dum lollipops -they are tiny and give a flavor break
If so these can be crushed and put in a cotton candy maker to make cotton candy
They can be bought at target Walmart etc …
Or you can use plain table sugar
wanted to add you probably will not gain weight
In kids none of those on een gained weight as long as they were all formula
Once they finished een and added food plus formula the weight slowly added on
some like smell plates
A plate of food you can’t eat but someone lets you smell
week one isn’t too bad
Week 2 is much worse
Then it’s ok for few weeks
get instructions on how to reintroduce food
You can’t go from all liquid to all solids
It’s a process
good luck
if it tastes bad
Lots of crushed ice in a cup
Pour the formula
Add a lid and straw
Really bad taste all of the above and plug your nose to drink as fast as possible
After taste is the issue
Crushed ice
Chew that with a sprinkle of table sugar (if allowed by Gi )
Gum has artificial sweeteners which can make diarrhea worse -check with Gi on that one
Some allow it some don’t
You can freeze peptamen ,boost etc to chew just don’t count it in the nutritional content for your day
Some Gi allow 10-20% solid food with een some don’t
Some permit dum dum lollipops -they are tiny and give a flavor break
If so these can be crushed and put in a cotton candy maker to make cotton candy
They can be bought at target Walmart etc …
Or you can use plain table sugar
wanted to add you probably will not gain weight
In kids none of those on een gained weight as long as they were all formula
Once they finished een and added food plus formula the weight slowly added on
some like smell plates
A plate of food you can’t eat but someone lets you smell
week one isn’t too bad
Week 2 is much worse
Then it’s ok for few weeks
get instructions on how to reintroduce food
You can’t go from all liquid to all solids
It’s a process
good luck
if it tastes bad
Lots of crushed ice in a cup
Pour the formula
Add a lid and straw
Really bad taste all of the above and plug your nose to drink as fast as possible
After taste is the issue
- Joined
- Apr 15, 2012
- Messages
- 14,792
https://www.neocate.com/shop/hypoallergenic-formula-and-products/nutra
This is the solid version for chewing while on een
Amino acid based for babies /little kids since they need to learn to chew early
This is the solid version for chewing while on een
Amino acid based for babies /little kids since they need to learn to chew early
- Joined
- Jul 2, 2013
- Messages
- 6,750
@momsa
There are teenagers that manage to do it without minding terribly. I think it’s easier (MUCH easier) if you’re either drinking the shakes or using a feeding tube that does go into the stomach, because then at least you’re not starving all the time. I think a some the of parents on the forum encouraged their kids to think about it as doing it one day at a time. Like “can you just get through Monday on shakes only,” then another day and so on.
He can also place his own NG tube at night (my daughter did) so he can have most or all of the formula at night, and remove it during the day while he attends classes at college. Some kids choose to do that way - mostly through the tube with a couple of shakes during the day to prevent them from getting hungry. Most GIs allow broth, so my daughter had that a lot to help with hunger.
I think it’s worth trying especially since your son wants to try it. At worst, he won’t be able to do it. At best, it works and perhaps you convince him to do supplemental EN to keep his weight up and for other benefits. Some research suggests it can also help you stay in remission
Regarding PT, my daughter had been pretty much confined to her bed because she was so underweight and malnourished and was unable to eat more than 500-700 calories a day (and that was on a good day). So in her case, it was general physical therapy to help with deconditioning and weight bearing exercises. It wasn’t specifically for osteopenia, it was more to get her functional, of
There are teenagers that manage to do it without minding terribly. I think it’s easier (MUCH easier) if you’re either drinking the shakes or using a feeding tube that does go into the stomach, because then at least you’re not starving all the time. I think a some the of parents on the forum encouraged their kids to think about it as doing it one day at a time. Like “can you just get through Monday on shakes only,” then another day and so on.
He can also place his own NG tube at night (my daughter did) so he can have most or all of the formula at night, and remove it during the day while he attends classes at college. Some kids choose to do that way - mostly through the tube with a couple of shakes during the day to prevent them from getting hungry. Most GIs allow broth, so my daughter had that a lot to help with hunger.
I think it’s worth trying especially since your son wants to try it. At worst, he won’t be able to do it. At best, it works and perhaps you convince him to do supplemental EN to keep his weight up and for other benefits. Some research suggests it can also help you stay in remission
Regarding PT, my daughter had been pretty much confined to her bed because she was so underweight and malnourished and was unable to eat more than 500-700 calories a day (and that was on a good day). So in her case, it was general physical therapy to help with deconditioning and weight bearing exercises. It wasn’t specifically for osteopenia, it was more to get her functional, of
- Joined
- Jul 2, 2013
- Messages
- 6,750
Actually, it’s often used when starting a new medication - as a bridge instead of steroids. The new med is not going to kick in overnight, so most patients are put on steroids or EEN (in the pediatric world) to control inflammation and hopefully induce remission while waiting for the biologic to kick in.
I had heard from a doc that EEN is less effective in isolated colonic disease, and this article seems to support that idea:
https://pubmed.ncbi.nlm.nih.gov/30193873/I'm wondering whether you've run across studies to the contrary.
https://pubmed.ncbi.nlm.nih.gov/30193873/I'm wondering whether you've run across studies to the contrary.
It's seldom used for adults because adults are in control of their own eating, and very few adults can stick to a diet with no solid food - just too restrictive. Same for teenagers. But little kids can have their diet controlled by their parents - making EEN a feasible option.
kiny
Well-known member
- Joined
- Apr 28, 2011
- Messages
- 3,472
EN is formulated to simplify digestion, that's what it is designed to do. Its ability to lower inflammation in crohn's disease was unexpected.
Digestion takes place in the small intestine, not the colon. That EN is less effective in treating colonic disease is to be expected. EN likely limits fermentation of colonic bacteria, but the fermentation process itself is not the culprit of inflammation.
Digestion takes place in the small intestine, not the colon. That EN is less effective in treating colonic disease is to be expected. EN likely limits fermentation of colonic bacteria, but the fermentation process itself is not the culprit of inflammation.
Last edited:
- Joined
- Jul 2, 2013
- Messages
- 6,750
As @Scipio stated, it's just compliance. Even with a teen, the teenager has to be 100% on board with EEN, otherwise it's just too easy for them to sneak food at school or after school. Most adults don't want to spend 6-8 weeks without eating any food. Little kids, on the other hand, just have no real choice since their parents make decisions for them and they're not used to making their own decisions.
@momsa, while studies do show it's more effective in small bowel disease, we've had a number of kids/teens on the forum do very well on EEN even with isolated colonic disease.
@momsa, while studies do show it's more effective in small bowel disease, we've had a number of kids/teens on the forum do very well on EEN even with isolated colonic disease.
I read a paper that said een significantly improved gut biome in terms of removing harmful bacteria, that thrives on sugar, and so I think it's worth doing even for colonic inflammation. Gut biome is heavily under researched for ibd. And I don't imagine many with ibd have a biome balance anything like healthy patients.
Is it literal abrasion from solids that they think can activate ibd flares which explains why liquid diets help calm and repair?
I have determination to try 12 weeks on een polymeric formula. I don't have good relationship with food as it is, I find it a chore so I won't miss not eating lol.
As long as I can avoid tooth decay I'll be able to get through it I believe.
kiny
Well-known member
- Joined
- Apr 28, 2011
- Messages
- 3,472
In general, treatment with EN causes a reduction in microbiome diversity and increases dysbiosis, usually shifting away from what would be considered a "healthy" microbiome in controls. Some studies use stool samples to come up with a microbiome picture, others mucosal tissue, and the results vary somewhat. But in general, EN "worsens" dysbiosis and greatly reduces microbiome diversity.
Whatever method of action underlies EN and its ability to reduce inflammation in crohn's disease, it is unlikely that it is the result of a microbiome shift to a so-called "healthy microbiome", quite the opposite.
One of the most important studies and clues we have are those from professor Rutgeerts. He did very important research in the 80s and 90s.
One of his most interesting studies are his crohn's disease studies about the impact of the fecal stream.
-If you remove or divert the fecal stream in patients, their bowel heals.
-If you introduce a patient's effluent onto previously unaffected tissue, that tissue develops crohn's disease.
-If you filter that same effluent to the point where all bacteria, fungi and microparticles are removed, no inflammation takes place.
A different team under Harper confirmed this in his own patients. This happens in every single patient, and these studies were well done.
You treat people with EN (malnourished, underweight) or you use intravenous feeding for serious cases (anorexic, hypercatabolism), and somehow their bowel heals. This might be explained due to a reduction in the fecal stream.
kiny
Well-known member
- Joined
- Apr 28, 2011
- Messages
- 3,472
People ask why someone can't fast instead to limit fecal content. The GI tract, especially the small intestine, needs a constant daily source of building blocks to repair itself, it needs a high nitrogen intake to do this, the small intestine is constantly looking for sources of glutamine to repair itself. You can't deprive the small intestine of these building blocks, you just need to provide them in a way that allows these proteins and nutrients to be taken up as proximally as possible, before most of these nutrients reach the ileum, EN does this.
It's really hard to do this yourself with some kind of diet, low residue diets try to do this, but they will have nowhere the effect EN has.
It's really hard to do this yourself with some kind of diet, low residue diets try to do this, but they will have nowhere the effect EN has.
Last edited:
kiny
Well-known member
- Joined
- Apr 28, 2011
- Messages
- 3,472
Some of the major explanations used to explain EN's method of action, and my opinion on them.
1) "EN lowers inflammation due to a major shift in the intestinal microbiome. "
This theory is very popular but I find difficult to justify. EN causes these microbiome shifts even in people with inactive disease who
use EN to mitigate malnutrition. The microbiome shift itself involves a decrease in bacterial diversity and tends to increase dysbiosis, it veers
away from the microbial signature found in controls and "healthy" people.
2) "EN lowers inflammation due to a correction in nutritional status."
Another questionable theory. EN seems to work regardless of nutritional status.
3) "EN works due to a lack of microparticles"
A theory that has some merit. Whole foods contain a lot of physically large particles and compounds that could cross the epithelial
barrier and cause inflammation. EN is largely free of those particles.
4) "EN avoids foodborne infections"
A theory that has some merit. EN eliminates the possiblity of foodborne infections, low grade foodborne infections are extremely
common.
5) "EN stresses pathogenic bacteria and pathobionts"
A theory that has a lot of merit. There are large reductions of specific E Coli, Klebsiella, Strep when people on EN go in remission. Bacterial load in general is greatly reduced.
6) "EN reduces the fecal stream"
A theory that has most merit. EN uptake is proximal. Uptake of nutrients, protein and bacteria becomes limited at the site of the ileum,
rapid reduction of antigen causes rapid resolution of inflammation.
The idea of a reduction in fecal stream is actually not very popular. Most new researchers seem unaware of Rutgeerts his studies because the studies are somewhat older, even though he's been instrumental in unraveling this disease. EN causes a rapid reduction in inflammation, usually wihin 24 hours, its method of action has to be immediate. Most theories don't explain this, but a rapid decrease in antigenic content from a reduction in the fecal stream does. EN is popularly used by astronauts for that specific reason.
1) "EN lowers inflammation due to a major shift in the intestinal microbiome. "
This theory is very popular but I find difficult to justify. EN causes these microbiome shifts even in people with inactive disease who
use EN to mitigate malnutrition. The microbiome shift itself involves a decrease in bacterial diversity and tends to increase dysbiosis, it veers
away from the microbial signature found in controls and "healthy" people.
2) "EN lowers inflammation due to a correction in nutritional status."
Another questionable theory. EN seems to work regardless of nutritional status.
3) "EN works due to a lack of microparticles"
A theory that has some merit. Whole foods contain a lot of physically large particles and compounds that could cross the epithelial
barrier and cause inflammation. EN is largely free of those particles.
4) "EN avoids foodborne infections"
A theory that has some merit. EN eliminates the possiblity of foodborne infections, low grade foodborne infections are extremely
common.
5) "EN stresses pathogenic bacteria and pathobionts"
A theory that has a lot of merit. There are large reductions of specific E Coli, Klebsiella, Strep when people on EN go in remission. Bacterial load in general is greatly reduced.
6) "EN reduces the fecal stream"
A theory that has most merit. EN uptake is proximal. Uptake of nutrients, protein and bacteria becomes limited at the site of the ileum,
rapid reduction of antigen causes rapid resolution of inflammation.
The idea of a reduction in fecal stream is actually not very popular. Most new researchers seem unaware of Rutgeerts his studies because the studies are somewhat older, even though he's been instrumental in unraveling this disease. EN causes a rapid reduction in inflammation, usually wihin 24 hours, its method of action has to be immediate. Most theories don't explain this, but a rapid decrease in antigenic content from a reduction in the fecal stream does. EN is popularly used by astronauts for that specific reason.
Last edited:
Is there not already disbiosis from ibd patients due to inflammation anyway? Swapping one for another but one has no inflammation seems like a good idea. For partial nutrition setup perhaps high fermented foods can help undo disbiosis?
kiny
Well-known member
- Joined
- Apr 28, 2011
- Messages
- 3,472
It's the chicken or egg question. Is the dysbiosis the result of inflammation or is inflammation causing dysbiosis.
There's some clues dysbiosis is simply a result of inflammation and not the cause.
-treatments like probiotics and fecal transplants that try to "restore" the microbiome to whatever is considered healthy, have been incredibly unsuccessful in crohn's disease patients, with fecal transplants causing such a spike in inflammation that some studies had to be stopped https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6620877/
-intestinal TB is a good example where a dysbiotic microbiome is a common feature that coincides with inflammatory markers, but dysbiosis is clearly not the cause
-EN causes rapid dysbiosis and decreases bacterial diversity, yet it has the highest remission rates for crohn's disease patients, twice that of anti-TNF
There's some clues dysbiosis is simply a result of inflammation and not the cause.
-treatments like probiotics and fecal transplants that try to "restore" the microbiome to whatever is considered healthy, have been incredibly unsuccessful in crohn's disease patients, with fecal transplants causing such a spike in inflammation that some studies had to be stopped https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6620877/
-intestinal TB is a good example where a dysbiotic microbiome is a common feature that coincides with inflammatory markers, but dysbiosis is clearly not the cause
-EN causes rapid dysbiosis and decreases bacterial diversity, yet it has the highest remission rates for crohn's disease patients, twice that of anti-TNF
Last edited:
kiny
Well-known member
- Joined
- Apr 28, 2011
- Messages
- 3,472
Right, it shouldn't be seen as a trade-off. The inflammation is the destructive part of crohn's disease. If EN maintains remission, that's all that matters. You give a person with intestinal TB antibiotics, regardless of what it does with microbioal diversity, it's not some kind of trade-off where you weigh inflammation against microbial diversity, no, everything is secondary to treating the infection and preventing destructive inflammation.
I had IV feeding for over ten weeks at age 11 (forty years ago) hospital based for duodenal ulcers. I don't recall thinking I couldn't do it again and I may have to (at home with a port).
I couldn't stand seeing food commercials but I never had any doubt I couldn't hold out until the end. I'd do it over the surgery I had in a heartbeat. But I also don't have a strange personality of strong will with food and drink. I can just stop things I like and fight the urges if I desire too easier than most.
I think doctors should use this more and either prescribe medical marijuana or other Perscription pills to help get through it. It's a way better treatment than most others. Just need to suppress or distract the eating urges. I played video games tons to distract.
I couldn't stand seeing food commercials but I never had any doubt I couldn't hold out until the end. I'd do it over the surgery I had in a heartbeat. But I also don't have a strange personality of strong will with food and drink. I can just stop things I like and fight the urges if I desire too easier than most.
I think doctors should use this more and either prescribe medical marijuana or other Perscription pills to help get through it. It's a way better treatment than most others. Just need to suppress or distract the eating urges. I played video games tons to distract.
