Ending EEN

[OrlaRi]

Hi Guys,

My 7 year old has been diagnosed since mid-August. She finished 8 weeks of EEN. Her bloods were good & show remission. Shes started 125mg of 6MP per day & will have her next bloods taken on Tuesday.

The dietician gave us a 2-page advice sheet on how to reduce over 4 day’s from 6 EEN drinks per day to 2. He recommended low residue diet, transitioning to brown bread, rice etc within 2 weeks.

We were really into juicing & Orla particularly loved the juices,from fruit & veg. Now my thought process & understanding of how food affects Orla’s Crohn’s is totally screwed up & confused. I’m even wondering if the juicing could have triggered her Crohn’s, by taking away some of the lining in her stomach???

Anyway, I’m just looking for reassurance that fruit & veg are healthy for a Crohn’s sufferer. She’s only had crackers & white carbs so far so I’m very nervous

Thanks for your support

 

[my little penguin]

6-mp takes 3-4 months to be effective
So if she just started 6-mp you may want to ask if she can continue partial een a bit longer
80% een and 20% food
Big hugs juice didn’t cause your child’s Crohns
Kiddie Crohns especially under 10 at dx is considered early onset whichhas very different factors than older kids or adults

Veggies (raw ) or fruit -raw can be hard on a healing gut
Her gut is healing
When Ds transitioned
Lots of easy to digest foods
Plenty of time for variety and veggies later
Plain white rice /mashed potatoes. And boiled chicken
We only added one new thing over three days
No fat or oil
Later add well cooked veggies
Squash zucchini eggplant
No broccoli or cauliflower (things that cause gas )

Good luck
Food can be their friend if introduced slowly
Just let the 6-mp work a while (3-4 months )
Then get adventurous woth the GI permission

 

[Maya142]

Juicing did not cause your kiddo's Crohn's :ghug:. I know it's hard when you've just been diagnosed - you feel like something you did must have caused the IBD. But it is really and truly not your fault. Most research suggests it's a combination of genetic and environmental factors.

Research also does suggest that fiber and vegetables are good for Crohn's. Juicing probably helped your kiddo!

However, some patients with IBD have a really hard time with fiber and then restrict themselves to easily digestible, low residue foods. Some GIs believe that most patients do it unnecessarily, and that most patients can eat things like fiber, nuts, seeds etc. The one exception is when the patient has stricture - then low residue is really needed to prevent an obstruction.

My daughter has IBD and Gastroparesis (delayed gastric emptying) both of which make eating vegetables (fiber) difficult. When her Crohn's is especially active or her GP flares up, we definitely stick to a low residue, low fat, bland diet.

So we end up going with soups most of the time. Spinach soup or creamed spinach are favorites. If not soup, we'll do very well-cooked veggies for her. Mashed potatoes, sweet potato baked fries, mashed sweet potatoes, potato pancakes...as you can see, potatoes are a favorite ! Squash and tomato are other options for soup.

I would most definitely try to add one vegetable at a time so you can figure out what works for your daughter. My daughter used to love green beans and broccoli but now they cause pain, diarrhea and cramping, so we avoid them.

 

[Pangolin]

Here's a study with a nice graph showing calprotectin levels before EEN, at the end of EEN, and after EEN. Very quickly after EEN was stopped, calprotectin (and probably intestinal inflammation) went right back up. Why stop?

http://program.m-anage.com/espghan2...FjAAegQIAxAB&usg=AOvVaw3hdEMXyVoWvAGJLI7nFt2T

 

[OrlaRi]

Here's a study with a nice graph showing calprotectin levels before EEN, at the end of EEN, and after EEN. Very quickly after EEN was stopped, calprotectin (and probably intestinal inflammation) went right back up. Why stop?

http://program.m-anage.com/espghan2...FjAAegQIAxAB&usg=AOvVaw3hdEMXyVoWvAGJLI7nFt2T

Thanks a million for your replies. I will make soup tomorrow & freeze some of it for the week. So plain carbs & soup. We’re staying with 4 juices, down from 6 for time being. I find it’s 100% easier during the week as everything is routine, but at weekends, everyone else in the family is snacking & there’s a lot of sweets, chocolate, biscuits etc going on.

Today she had a boiled egg & toast. She also had a pancake that her sister cooked as a long promised treat after her 8 wks of EEN. Although she loved it when she was eating it, she had pains in her tummy about 2 hrs later. I think we’ll go back to bland for tomorrow, & maybe try some soup. It’s so awful to feel like I’m poisoning my child with food

Any other advice on suitable foods would be great. I’ll definately read that article now too.

Thank you

 

[Pangolin]

There is NO medically supported reason or time to stop EEN if it is working. All of the studies on EEN show that it works great for as long as you do it, but when you stop, Crohn's symptoms return.

I know I'm the EEN guy on here, but we've been there. When my son was on the feeding tube, I saw getting the tube out and eating non-liquid food again as "returning to normal." Yet when we did, he started getting worse again. He went from maybe a 5 out of 10 symptoms (where 10 is the hospital and 0 is nothing) back up to 7. Stomach pain, bleeding, other symptoms.

That's when he went back on the Pediasure. Symptoms quickly improved. He went from 7 to 4 within a month (maybe even within a week). The next month, down to 2. We're now on month six (we've also done antibiotics) and symptoms are down to 0.

There is no reason to stop EEN if it is working for you/your kid. The only reason people got the idea of stopping after two months is because that's when the funding for EEN ran out in studies.

But it is also okay to have a small amount of regular food, even while on EEN. I wouldn't go above 20% of calories a day, but a cookie or small snack is fine for most.

We live with the "other kids are eating real food problem" mostly by not eating things he likes in front of him--actually, I think all of our health has improved since we cut most of the chips, cookies, and other 'junk food' from our diets. And sometimes one of us takes the kids who can eat pizza to the parlor while the other does something fun with the kid who has Crohn's. I'd much rather have some inconvenience in planning dinner than have him in pain again.

All the best of luck.

 

[my little penguin]

Pangolin your child has severe disease and is also on remicade correct ?
Some kids woth severe disease need multiple therapies including een
Other kids with mild disease may need only een for a bit then just 5-Asa
Moderate disease can be methotrexate/een or 6mp or combo

A ton of kids have mild belly pain when they reintroduce food
Some need more time on een
Others may need addition of steriods for a week or two woth EEN
Plus maintenance med like mtx or 6-mp

Crohns is not a one sizes fits all
The majority of kids do just fine woth a normal diet plus supplemental EN
Ds has for over 8 years
Yes he is on biologics plus mtx
But mostly that’s for his arthritis which gives him a lot more trouble (at least the past couple of years ) and can’t be fixed by EEN

The key is finding what works for your kiddo since everyone is different

Case In point for een Ds has to use peptamen jr the first time which is foul tasting
Pediasure wasn’t tolerated
Later even that couldn’t be tolerated and he needed amino acid based. Elemental formula
Which per Ds is worse than eating rotten frozen French fries
Few kids can drink it orally with out a tube

We all want our kids to feel better and heal
How one person gets there vs another isn’t important
That they can get there is
Good luck re introducing food
Just take it slow
The gut has been resting for weeks and sometimes takes a bit to wake up

 

[Pangolin]

My Little Penguin, my comment wasn't directed at you, nor was it advice for you or your kid.

Yes, my son is on Remicade. When he went off EEN and was on Remicade alone, his disease symptoms quickly increased, as noted, from 5 to 7. He went back on EEN and symptoms decreased steadily.

EEN is the MOST SUCCESSFUL treatment for Crohn's and there is NO medically supported reason to take a kid who is responding to EEN off of it. There are ZERO medical studies that support tapering EEN or replacing it with other treatments in kids who are responding well to it; studies on EEN show that when people go off, their symptoms go up.

In short, what you are recommending is NOT SUPPORTED by the medical literature.

All medications (even very safe ones, like Tylenol) have potential side effects. The medications for Crohn's are very serious medications with some serious side effects. EEN has zero side effects because it is just food that happens to be liquid.

Obviously EEN is not the only way to get to remission. There are, indeed, many medications and approaches, and some people need multiple treatments. But if someone is responding well to EEN, there's no reason to switch to something with more side effects and lower success rates.

It's like they say, "If it ain't broke, don't fix it." As long as EEN is working, keep doing EEN.

 

[Maya142]

Some kids are ok being on EEN long term. Most kids find it very had psychologically. Younger kids tend to do better than older kids. Teenagers in particular often just want to fit in and being unable to eat makes that hard.

EEN is generally used to induce remission and that is why it is generally used for 8-12 weeks. That is usually all that is necessary to induce remission. Usually a maintenance medication is started when EEN is started and that is what is used to keep the child in remission.

CHOP is doing some studies on diet and have advocated for EEN/EN for a long time. Now they use the 80/20 rule - 80% formula and 20% food. They say that studies that it works nearly as well as 100% formula and it is easier on children psychologically.

Most kids only do 8 weeks or so of the 80/20 EN and then it is decreased and food is added back, slowly. But most kids are kept on some EN. I believe there are some studies that show that supplemental EN works to help keep disease activity down. And besides that, most kids benefit from it for growth and weight gain, especially those near puberty.

My daughter was on about 50% formula for several years. She has used the tube and has also tried drinking formula. She was unable to drink enough formula to gain weight and since she was severely underweight, we had to go to an NG tube. She inserted it by herself every night (it's much less intimidating than it sounds!) and did the feed overnight and pulled it out in the morning.

She required an elemental formula - Ensure and Pediasure caused diarrhea and nausea. Peptamen Jr. which is semi-elemental, also caused diarrhea (10x per day!). So we were stuck with elemental formula which truly tastes awful (believe me, she made me try it more than once!). She claims it tasted like dirty, sweaty socks :lol:.

So formula too has both plusses and minuses!

My daughter found EEN (100% formula) too hard and got very depressed. She was 16 when she was diagnosed and already had another chronic illness (severe arthritis). She was on homebound school at the time because her arthritis was really flaring and she was in severe pain. When she went back to school, the last thing she wanted to do was deal with not being able to eat and feeling more and more like she would never be "normal."

Her GI decided that pushing EEN was not worth it and so we went to supplemental EN plus bland food (and meds of course - Remicade +MTX). She also worked with a psychologist who specializes in chronic illnesses and worked in the GI dept. That helped her accept the new illness and helped her deal with challenges that came up - getting used to the NG tube for example. And later, having an NJ tube and then GJ tube (which is placed surgically).

So EEN is not always the appropriate choice for all kids - it really is very individual. Some kids are able to deal with it easily and some kids aren't. It really varies.

 

[my little penguin]

This is a supportive environment of ALL treatments
Including stopping certain treatments when a persons doctor recommends such .

Parents have enough guilt over what they could or should have done differently to possible prevent their kiddo from getting Crohns (nothing proven on this avenue )

The guilt early on is much worse than later

So if her doctor recommends her child stop EEN
And the poster wants to know how to transition that easier we are here for her
Not judging or telling her that she needs to keep her kiddo on EEN - the poster didn’t ask for that type of advice

I realize EEN is near and dear to your heart
It works great for your kid
That’s wonderful

We are here to support the poster on how to transition off EEN
Since that was asked
No pressure or debate over her child or her doctors choice .

 

[Maya142]

EEN is the MOST SUCCESSFUL treatment for Crohn's and there is NO medically supported reason to take a kid who is responding to EEN off of it. There are ZERO medical studies that support tapering EEN or replacing it with other treatments in kids who are responding well to it; studies on EEN show that when people go off, their symptoms go up.

In short, what you are recommending is NOT SUPPORTED by the medical literature.

Pangolin, the poster's GI is transitioning her daughter off EEN and on to a normal diet. I do not know what studies you are referring to but in the US, EEN is not done indefinitely. In other parts of the world, including the UK and Australia and several other countries in Europe, it is used much more often as the first-line treatment for induction of remission but even there, it is used for 8-12 weeks at the most.

I have been on these boards for 5.5 years and I can't think of a single child who stayed on EEN for years unless they had other issues, like EoE or many food allergies.

It is absolutely standard in the US to stop EEN and transition to a bland diet at first and then a more varied diet. Sometimes formula is kept as some percenatge of the diet and sometimes it isn't. I do not know where you are getting this info about keeping a child on EEN for years but I'd be interested to see it.

Lastly, I would like to remind you (and everyone else) to treat others with respect even if you do not agree with them. And to remember that every parent is doing their best to do what is right for their child. What is "right" or appropriate varies based on the child's age, disease severity, the doctor's preference, and many other factors. You can certainly express your opinion but remember that ultimately, we are all following our GI's orders.

 

[Pangolin]

*sigh*
I'm not trying to start a thing here. :rosette2:

You can certainly express your opinion but remember that ultimately, we are all following our GI's orders.

This is not true. Just the other day I remember you guys advising a lady whose GI didn't want to do yearly scopes that she needed to go against her doctors orders and insist on yearly scopes.

No one here believes that you should follow a doctor's orders if they contradict other, better medical advice or evidence. This is why people get second opinions or even switch to other doctors.

Also, if you check back up at the top, the OP only mentioned her dietician. Dietician aren't gastrointerologists and certainly aren't experts in Crohn's. I am quite certain you know more about Crohn's than the average dietician!

Medicine has not figured out the perfect way to treat Crohn's. Going off EEN at 8 weeks is not "medical advice", it's just a thing people do because they think they ought to. I know how it goes, because I thought so, too. I remember being exactly in the OP's shoes. I remember how happy I was when the tube came out because now my kid was "better" and could get back to being "normal" and eating "normal foods" and I remember how very flimsy our dietician's advice was.

It wasn't until my kid was doing noticeably worse that I realized EEN itself is a treatment. I know it doesn't work for everyone--but people should know that it is an option.

No one has actually studied how long EEN is beneficial for. The studies that have been done show positive effects for most people while on EEN and a return of inflammation once they go off. You can manage that with medication, but there is no reason to switch from one treatment to another if your current treatment is working and you're happy with it.

This is a supportive environment of ALL treatments...

Ya know, you're not very supportive of EEN. (Also, going off EEN is not a medical treatment.)

I have no idea whether the OP feels guilt, but that's not why I'm here. I am here to try to help people not suffer.

I was going to just leave things at the study I linked, but then I saw that her kid was in physical pain due to the reintroduction of food, and felt like I needed to note that there is no actual, medically supported reason to go off EEN if it is working for them. (I never said that they "needed" to be on EEN.)

Like I said, I know it doesn't work for everyone, but if it's working for them right now, there is no reason to push to get off EEN.

Peace, ladies.

 

[OrlaRi]

Hi Guys,

Thanks for the comments & I appreciate that this is a complicated disease because it affects each sufferer so differently. Just to clarify, we thankfully have a multi-disciplinary team, GI consultant, dietician, clinical nurse & psychologist. They all together have recommended tapering off EEN & reducing over 2-3 weeks to 30% EEN, rest food. I was becoming very stressed reading all the scientific studies on here, & trying to second guess the GI teams advices. Now I’ve decided to just trust their experience & expertise & just focus on being my little kids mum. Orla we’re told, has mild to moderate Crohn’s, with shallow lesions, but throughout her GI tract. I know & fear that her disease could flare more severely in the future so am anxious not to contribute to that.

We were amazed by the effects of EEN-within one week of starting, Orla was a different child! Diahoerra stopped, weight gain started, energy levels up, smiles came back & her palour went from grey to pink! However, I do think it was tough on her psychologically & I don’t think I would ask her to do it longer than absolutely necessary. I know we’ll need it as a tool in the future so I don’t want her to dread it. Our GI team say it’s not as easy second/third etc time around.

Thanks for all your advice & best of luck to your little ones suffering this wrotten disease x

 

[my little penguin]

Orlari you are right the second third time of EEN are very difficult for the kiddo
As they age even if they did relatively well on it at age 7
It becomes more difficult for them
Ds did EEN 4 separate times from age 7 on.
Last time was at age 12 and was extremely difficult then .
Not to drink the formula but just staying without solid food .

Other thing to think about as children age
The medical team will give them more of a “say” in the treatment plan and you as a parent less of a “say”.
For ds at almost 15 - he discusses woth the docs what tests he thinks he is willing to do
And treatments etc..,
Just last week - I thought we should switch one of Ds other treatments for another disease (doesn’t appear to be working very well to me) Ds discussed woth his docs and they decided to up the current treatment to see if that worked instead

The medical team explained
This is his life long illness and he needs to know how to handle it and trust docs are listening to HIM by time he is an adult
Vs having things DONE TO HIM.

As long as what he picks won’t do MORE harm the medical team “tries” to listen
But they also explain what the docs chose and why

After 13 or 14 the doctors want “assent “ from the patient
(Meaning the kiddo has to agree to the procedure test or treatment
As well as “consent” from the parents

Wishing you all the best of luck

 

[Pangolin]

Best of luck, I hope you find some foods that work well for your kiddo.

 

[Maya142]

Medicine has not figured out the perfect way to treat Crohn's. Going off EEN at 8 weeks is not "medical advice", it's just a thing people do because they think they ought to. I know how it goes, because I thought so, too. I remember being exactly in the OP's shoes. I remember how happy I was when the tube came out because now my kid was "better" and could get back to being "normal" and eating "normal foods" and I remember how very flimsy our dietician's advice was.

It wasn't until my kid was doing noticeably worse that I realized EEN itself is a treatment. I know it doesn't work for everyone--but people should know that it is an option.

No one has actually studied how long EEN is beneficial for. The studies that have been done show positive effects for most people while on EEN and a return of inflammation once they go off. You can manage that with medication, but there is no reason to switch from one treatment to another if your current treatment is working and you're happy with it.

Pangolin, you may state your opinion, but you do not need to guilt anyone or shame other parents for their choices. You can certainly state that you believe your child can stay on EEN indefinitely but there is no actual data that backs that up.

Most children struggle with not eating and want to go back to eating. Most GIs use EEN for 6-8 weeks for a reason - it's HARD for most kids. And once kids get to be pre-teens or teens, they get a say in their treatment. And they need to be 100% on board with EEN or they will end up sneaking food at school or slipping up at a friend's house.

If you had read OrlaRi's previous posts, you would have known that she is following the advice of her GI. Her daughter is on 6MP for her Crohn's, so "going off EEN" IS medical advice in this case - it was used to induce remission and is being replaced by 6MP to maintain remission.

 

[Pangolin]

Maya, each of us is here to try to optimize our treatment of Crohn's. There are many options, and no one option is going to work for everyone. Each person here has to make an informed choice about which treatment(s) is/are the best choice for them. I absolutely do respect people's treatment choices, but I want their decisions to be well-informed.

What I have observed is a lot of pressure *not* to use EEN. The OP is in fact an example of this. The OP finished 8 weeks of EEN, it worked great, and they're transitioning away from it *not* because there is some problem with it but because the doctors are telling them to. Unfortunately, the doctors have no particular basis for this recommendation.

I quote from a review article on EEN from this year:

4.3. Duration of treatment
Current recommendations are that EEN is given over a period of 6-8 weeks, either orally or by a nasogastric tube [1]. Although inflammatory markers begin to fall within the first 2 weeks of EEN they continue to improve over the 6e8-week treatment period. There is considerable variation in practice. An international survey of practice by Whitten et al. observed large variation in EEN dura- tion (<6 weeks - >12 weeks) with the most common practice to continue EEN for 6-8 weeks prior to food reintroduction [57,77].

There are no controlled trials looking at the appropriate length of treatment, current practice is based on consensus [1,5].

Meanwhile, we have data showing a rapid increase in fecal calprotectin as soon as EEN is stopped (after 60 days of EEN treatment)--despite other simultaneous treatments--as I linked previously in this thread. We have good evidence against ending EEN right there.

So what we have here in this thread is a switch from EEN to 6MP that has no actual scientific basis. It's fine if someone says, "EEN is just too hard, I want to try something else". I have no problem with that whatsoever. But I don't think people should feel pressured to switch away from something that's working.

I can tell you that I personally felt pressured not to use EEN, but it's turned out that after 6 months of continuous EEN that I would say 90% of my son's improvement since diagnosis has been due to EEN, *not* infliximab or anything else.

I support each person here looking into a variety of treatment options. While we're at it here, let's discuss some of those:

Corticosteroids: can be useful short-term, but can't be used long-term and have many side-effects; tends not to result in mucosal healing

Biologics (remicade, humira, stelara, etc.): infection risk, possible cancer risk, cost; studies show remission in up to 67% of patients; may result in mucosal healing

Immunomodulators (6MP, azathioprine, etc.): bone marrow suppression, cancer risk, various other side effects; only moderately effective--possibly not much better than placebo; does not lead to mucosal healing in a majority of patients.

Antibiotics (eg metronidazole, azithromycin, RHB-104): some promising research based on the MAP theory, but not widely used for induction or maintenance of remission. Probably underused, but research is focused on biologics. Possible side-effects include peripheral neuropathy.

Diet (eg SCD): Compliance with SCD can be very hard; no proven theory of causation makes choice of food difficult; tends not to result in mucosal healing.

Diet (EEN): no side effects; remission rates over 80% in a number of studies; can be tested independent of doctor's orders; data indicates sudden increases in fecal calprotectin after stopping; results in mucosal healing in a majority of patients; can be difficult to adhere to due to flavor (which can be worked around with tubes if desired).

Miscellaneous other treatments (eg low dose naltrexone, fecal transplants, etc.): worth investigating, but side effects and effectiveness vary widely.

These are all valid choices for different times and patients, but I think I'd start with the option most likely to result in healing that also has the fewest side-effects.

Edit: I just want to add that I know this can be a very difficult disease to get under control. Many people struggle and never find a treatment that really works for them. Some people have years and years of problems and complications. I've read about all too many sad cases, so I support whatever works to get inflammation to zero. I would hate to see someone stop using something that's really working for them without a good reason and a good alternative.

 

[crohnsinct]

I don't mean to hijack this thread further but wanted to jump on about long term EEN.

For years I have been knownaround here as the crunchy, granola, natural mama and as such am a huge proponent of EEN and diet and exercise with regard to IBD. MLP recently posted a paper talking about what is good for IBD and I swear this stuff was posted here years ago in the diet section.

However, I think we have to use caution when saying that EEN does not have any side effects AND has remission rates of 80%+. For the most part this information is true but only with regard to short term use (up to 8 weeks). Also, most studies of EEN were done on people with Crohn's not UC and Crohn's primarily in the colon. EEN, short term or otherwise does not have a good a success rate with strictly small bowel disease. Although many of us here (my daughter included) have had wonderful results with EEN and small bowel disease andI think everyone should try it.

To my knowledge (and I follow the research closely with our GI's registered dietician) has never been studied for long term effectiveness nor has the safety profile been assessed. True half calories from EN along with other treatments has been studied and found to be effective at prolonging remission and allowing people to stay on meds longer but long term EEN has not been studied.

EEN has many things about it that are known specifically not to be good for IBD, very high sugar counts, carrageenan, no fiber etc. At conferences physicians presenting EEN actually even say this....they don't know. why it works, it just does. For short term use to induce remission it is a very good alternative however long term the jury is still out. Long term exposure to that level of sugar, the preservatives, emulsifiers and having no fiber in your diet can not be good for IBD or overall health. Not to mention it is missing many phyto nutrients etc. necessary for health. There are many people with other diseases who can not eat solid foods who must rely on EEN and for this reason there is a race to develop a better alternative to the current formulas. Our RD is tellingly ourdaughter to go to college and learn to develop a good formula and she could be a millionaire.

Please don't think I am saying it isn't a viable alternative and dangerous. Certainly the pharmaceuticals also carry their own risks. I just think we have to be careful when saying something doesn't have any side effects and a certain remission rate long term when there aren't studies to back this up.

 

[Maya142]

Pangolin, even the document you quoted says that EEN is not usually continued long-term, albeit, not quite so explicitly.

According to that paper and everything else I have read so far, EEN isn't usually continued for longer than 12 weeks unless absolutely necessary. This is from the paper you posted:

A detailed appraisal of the role of maintenance enteral nutrition (MEN) in maintaining remission is beyond the scope of this review. ESPEN guidelines suggested maintenance enteral nutrition in the form of oral nutritional supplements may be beneficial to nutritional status and anthropometry and in doing so may influence length of remission; however the evidence is not strong enough to make a recommendation [3]. There is some evidence suggesting that MEN may prolong remission and be steroid-sparing [88, 89, 90] although a 2017 study by Gavin et al. did not show a reduction in relapse rates at 12 months [91]. Further prospective studies are required before MEN can be recommended as an effective maintenance treatment.

It states that there needs to be more research before using EEN as an "effective maintenance treatment." That may be why doctors "pressure" kids to stop it.

There is, however, evidence that shows that supplemental EN (by which I mean some % formula, and the rest of the diet is food) does help maintain remission in combination with an anti-TNF.

I want to state right now that I am NOT against EEN at all. I wish my daughter had been able to do it. But she could not, and that's ok. She did manage to do 85% formula and 15% food and that worked very well for her.

And for the record, I'm not against formula either - my kiddo was on formula for years and I can truthfully say that formula kept her alive when she was completely unable to eat food (due to Gastroparesis, not Crohn's). Without her J tube and formula, I don't know if she'd be here - that's how underweight and malnourished she was.

What I am against is insisting that there is only one "right thing" to treat every child with IBD - EEN.

I think you can certainly present EEN as an option to your child's GI and to your child. Some kids will be able to do it, and others may not. I do think the age of the child plays into that - it's a lot easier to make a 5 year old drink his formula vs. a 15 year old. And clearly, since you feel strongly about this keeping your son in remission, there is no harm in telling other parents your position on it.

But let's keep all discussions civil and accept that others may disagree with your view and that is ok.

Biologics (remicade, humira, stelara, etc.): infection risk, possible cancer risk, cost; studies show remission in up to 67% of patients; may result in mucosal healing

Immunomodulators (6MP, azathioprine, etc.): bone marrow suppression, cancer risk, various other side effects; only moderately effective--possibly not much better than placebo; does not lead to mucosal healing in a majority of patients.

As for medications - biologics may increase some types of cancer risks - melanoma and lymphoma. But it has also been found that inflammation increases the risk of cancer so it may not necessarily be the drugs used that cause an increase in cancer in IBD patients. It's the fact that they have IBD and an immune system that does not function correctly.

I know for a fact that in RA, it's definitely NOT biologics that increase the risk, it's chronic inflammation. I think there is some data that supports it is the same for IBD. Biologics are generally considered quite safe and very effective for IBD.

My daughters have been on biologics for aboout 10 years and have had no side effects at all. They had many more side effects with immunomodulators like Imuran and MTX.

In terms of safety, Azathioprine and 6MP are being used less and less in the US. You are correct that they come with an increased cancer risk - non-melanoma skin cancer, Lymphoma in older people and very, very rarely, hepatosplenic T cell lymphoma which tends to affect adolescents and young adults (males more than females) and is nearly always fatal. But that is so rare that I don't think there is even a statistic on how often it happens!

In terms of good formulas, like crohnsinct mentioned above, there has been an increase in formulas using "real food" in the last few years. Blended diets (through a tube) have also become more popular. Kate Farms is new, Real Food Blends is another one, Liquid Hope, Nourish....there are more, but I'm blanking on them right now.

Feeding Tube Awareness is a good source of info about formulas and feeding tubes. They have a website and a Facebook Page where you can ask questions.

 

[Pangolin]

Maya and crohnsinct, thank you for your responses. I agree with most of what you have to say, but I'll add a few comments:

In general, I don't object to any particular decisions anyone may choose for themselves, but I do object to the consensus guideline of 8 weeks. I believe that guideline was determined without sufficient evidence to support it, and in fact it runs contrary to data on the subject.

Regarding disease location, it was originally believed that EEN worked better with small bowel involvement, but it has since been proven effective for all Crohn's locations.

MEN (maintenance enteral nutrition) has been studied somewhat in longer-term studies, but I believe that MEN is typically 50% EN or less. I suspect that 80%+ for "MEN" (or extended EEN) would have much lower relapse rates, but I have not found such a study.

I've also seen some data indicating a linear relationship between % ordinary diet and inflammatory markers, where half-EN produced a nice reduction in inflammation but still left some, while going near 100% may eliminate all or almost all of the inflammation in patients that it works for. This suggests to me that something in the typical food may be considered an underlying cause for many patients.

Ideally, someday we'll know exactly what it is in normal food that's causing these problems and thus be able to design a diet around each individual's sensitivities, but for now this is the best we have (in people it works for who can tolerate it).

 

[Maya142]

In general, I don't object to any particular decisions anyone may choose for themselves, but I do object to the consensus guideline of 8 weeks.

I'm not sure what the consensus guideline was based on - my guess would be it's the minimum time needed to ensure induction of remission.

I know your child does not mind EEN, but MOST kids are eager to get back to eating.

I suspect that 80%+ for "MEN" (or extended EEN) would have much lower relapse rates, but I have not found such a study.

I don't think anyone here is arguing against formula's efficacy - we all agree EEN works, especially for children. We all agree that some kids do relapse when food is added back. And I'm sure every here agrees that 50% formula is going to be less effective than 80% formula.

It's just that doing a study of long-term EEN would be hard to do - not many kids are willing to give up eating for months to years at a time. And most pediatric GIs try not to restrict food unless there is a real need to - due to an obstruction or for complete gut rest (TPN is usually used for that).

.

 

[RobShamrock]

I'm in same country as Orla, also with a Son that did EEN, 8 weeks but a very slow taper off it by slow I mean we finished EEN December '17 and still remained taking EEN up to July/August this year, sporadic, but still 1 or 2 bottles per day.

We're lucky in ireland in a way, we have a drug payment scheme with a montly limit of 134euro per month, once you reach that any drug or EEN costs are covered. Our consultant did recommend that perhaps a course of EEN occassionally for a month might be beneficial but not sure how well that would go down now with a 14yr old who's feeling good

 

[asadmom]

Here's a study with a nice graph showing calprotectin levels before EEN, at the end of EEN, and after EEN. Very quickly after EEN was stopped, calprotectin (and probably intestinal inflammation) went right back up. Why stop?

http://program.m-anage.com/espghan2...FjAAegQIAxAB&usg=AOvVaw3hdEMXyVoWvAGJLI7nFt2T

I know, right

 

[my little penguin]

@asadmom
You stop een because your teen will Want to eat solid food
Drinking formula day and day out without eating solids around other teens is extremely difficult and psychologically draining
Most adults will not even try een
If they do it’s for 2 weeks
True een is no solid foods for 6-8 weeks
Just to lower inflammation
My kiddo did een twice
Once at 7 (9 weeks ) and once at 12 (only 2 weeks )
Second time was very difficult to convince him

even kids /teens who are on board at first
Discover how difficult and hard it is to continue for 8 weeks
I tried it for two days for ds
Never ever again

once your teen has started een
It’s a matter of trying to making the full 8 weeks
It’s very very tough

 

[my little penguin]

Also understand after age 12 your child is the age of ascent
Meaning you as a parent give consent on meds /procedures
But your teen has the right and doctors require the teen is on board /agrees with all meds /procedures /plans including een

 

[crohnsinct]

Actually EEN is just another therapy and like all therapies it might work at first but the longer you do it or the more often you do it, it has proven to lose effectiveness….just like the drugs.

EEN worked beautifully for O the first three times around. This last time not do much.

But agree with MLP, if we are going to be upset about life long drugs and our children losing a “normal” life well then Lifetime, constant EEN should make us equally upset.

 

[Pangolin]

Looking back at this thread, we were in a totally different place then. I was annoyed that people are told they *should* stop EEN after 8 weeks--there's an idea out there that it only works for that long. Really it just hasn't been studied for longer periods of time.

In the papers, EEN is often compared to steroids. That's a good way of looking at it. Sometimes, people are unable to taper off steroids because nothing else is working. That was basically the situation my son was in back then--he was unable to successfully taper off of EEN--because the Remicade wasn't working.

Obviously food is very important in life. EEN is a great option until such time as another effective treatment is figured out. Sometimes that takes longer than 8 weeks.

(EEN is also vastly underused during recovery from surgery, but that's a different story)

 

[jadegreen]

Yeah, and I think the reason it hasn't been studied for much longer than that (I thought I saw 12-wk studies? maybe?) is just because you get so sick and tired of it, most people don't have the will power to go that long. I know I wouldn't! I did 6 weeks EEN and probably just over 6 weeks 50/50.