Remission without steroids – liquid diets and EEN
Exclusive Elemental Nutrition (EEN) has been studied extensively worldwide and has been scientifically proven to be more effective than steroids in achieving sustained remission from IBD flares in most cases. It refers to an exclusive liquid diet using either elemental or polymeric formulae. The patients are not allowed to have any other dietary items except plain water and sometimes a few other beverages.
EEN is safer, and can be easier to endure, than the side effects of steroids. It is a first-line treatment for IBD flares in Japan and in some European countries. It does require close medical supervision, especially when practiced by pediatric patients.
Why EEN works
EEN allows an inflamed bowel to rest and recover while providing easily absorbed nutrients and antioxidants. It also seems to reduce the antigenic load and modify gut flora.
EEN is also an ideal transition from handling a flare to a long-term maintenance diet therapy like SCD.
While the benefits of EEN are significant, there are some challenges
- The standard EEN formulas include ingredients that are far from optimal, like corn syrup, sugar, soy, and dairy proteins. However, despite these shortcomings, these products have been studied extensively and have a proven track record in bringing individuals into remission.
- It can be very expensive. Insurance will usually cover the cost of nasal gastric (NG) tube feeding, but not the cost of drinkable formulas. The nonstandard formulas, like the popular Orgain, also contain many ingredients that are not optimal, but are marketed as a healthier version of formula. They are GMO-free, organic, etc. The main problem with the nonstandard formulas is the lack of clinical studies that demonstrate remission of symptoms and mucosal healing. For this reason, this option is never covered by insurance.
- Some research has shown that while EEN is effective in achieving remission, the post EEN gut microbiome is less diverse and some relapse may occur in some cases. The researchers suggest using post diet probiotics. It is worth noting that following EEN with diets like SCD may be an ideal way to address this challenge, since SCD restores and maintains a healthy gut microbiome.
- EEN presents personal challenges, and it is not easy to do physically, psychologically and socially. Avoiding all solid foods for a minimum of 8 weeks is difficult. It is also hard to consume all the required daily number of calories without feeling bloated or nauseated.
- While EEN is very safe and has no side effects, it may increase the risk for dental cavities due to its high sugar content.
Example of popular EEN products
EEN is available as a polymeric or an elemental formula. It can be consumed as a drink or administered via NG tube. The more ‘broken down’ the protein is to elemental amino acids, the easier it is to digest but the worse the formula tastes.
- Ensure Plusis widely used in the USA and declared as the tastiest, in the eyes of some kids.
- Orgain like all other enteral liquids, it is not SCD legal, but parents love it because it is non-GMO and organic. It can be purchased at Whole Foods, CVS, Amazon, and Costco. Orgain has a dairy and a vegan option. The premade Orgain drinks are easy to carry around.
- Pediasure Peptide is a completely peptide based formula, but there is a concern about the sugar and soy it contains. Pediasure Peptide is also extremely cost prohibitive.
- Boost or Boost Plus are not completely broken down into peptiides, but are cheaper than Pediasure and can be as effective in most cases.
- Peptamen it is not flavored and taken only via NG tube, which can be uncomfortable to some, but works great to calm the gut and help gain weight. The proteins are broken down into amino acids so it is very easy to absorb in an inflamed gut.
- Modulen IBD is a product that is not readily available in USA, so parents order it from Canada. It’s made by Nestle and used routinely in other countries.
- Elecare has ingredients that are different than Ensure, Boost, Pediasure, etc. and some kids prefer this flavor. Consuming enough calories is less of a struggle when kids like it. Elecare can be purchased on Amazon, but is very expensive.
- There currently is no EEN liquid that is SCD legal. Some parents try to make their own using amino acid powders, combined with juice, oil and vitamins, but it usually does not taste good and it is hard to use effectively. Some parents have tried the SIBO formula , but it is unappealing and almost impossible to convince kids to drink it.
- Liquified SCD may prove a worthwhile option. It includes pulverized soups, broth, smoothies, fruit and vegetable juices, fresh squeezed greens with apple cider vinegar or lemon, etc.
When food is being chewed there are larger food particles that the gut has to break, but when food arrives to the gut already pulverized, it requires less digestive effort in the gut. For this reason, liquefied SCD may also provide bowel rest, similar to the commercial EEN products provide, but without the undesired additives.
However, some parents may be concerned about the high fiber content in liquefied SCD, since fiber may irritate an injured gut. In comparison, EEN products contain little to no fiber, to avoid challenging an inflamed gut.
Our personal experience with EEN
We used medically supervised EEN immediately following the Crohns diagnosis of our son. We are forever grateful to Dr. Ghassan Wahbeh, Professor of Pediatric Gastroenterology and Director of the Inflammatory Bowel Disease Center at Seattle Children’s Hospital, who allowed us to use EEN instead of steroids under his supervision.
It was hard, and far from perfect, but EEN allowed us to avoid steroids and worked very well to achieve remission from symptoms and gradual improvements in inflammation markers. Our son spent 8 weeks without any solid foods, drinking 8-12 bottles of Ensure or Boost daily. He was in 6th grade and attended a public school where he was surrounded daily by pizza, candies and birthday cakes. His teacher loved food treats as part of the class curriculum… But he was strong and determined to do whatever he could to avoid the excruciating pain he had experienced before diagnosis. The elemental liquids triggered nausea and bloating, and after 8 weeks he just couldn’t fathom the thought of another day on EEN. His lab work improved, but was not yet normal. All blood inflammation markers were down but Dr. Wahbeh was not satisfied with low inflammation, demanding NO inflammation. This led us to transition from EEN to SCD.
This combination of EEN followed by SCD was not known when we used it years ago. It was our idea and our doctors were not supportive of SCD in the first few years. It proved to be a blessing, and allowed us to become the family that brought SCD to Seattle Children’s Hospital and to the attention of Dr. David Suskind. (see our story link)
Experienced shared by other parents
Finding liquid nutrition that our child can tolerate well for several weeks was a challenge. We experienced symptoms like bloating, nauseous, cramps, diarrhea… it was hard to maintain EEN for the needed length of time. Elecare was the only liquid our child could tolerate as a drink. Ideally, the GI team can provide different samples of EEN products to help find the best option, but sometimes it takes perseverance from parents to find the best formula for their child.
There is an adjustment period to liquid formula, so it’s tough to know if it is a reaction to ingredients or whether the bloating/discomfort are due to adjustments in the first couple of days.
Our strategy to get enough calories was to add night tube feedings. It was difficult getting the child to drink large volumes of formula every day for weeks at a time. EEN via a feeding tube definitely makes it easier to get the nutrition in. Some kids adjust to the tube fast and learn to insert it by themselves every evening, but for others the tube can be uncomfortable or create emotional and social challenge.
My child is tolerating Elecare Jr Vanilla almost exclusively. It is bland and plain, but you can flavor it. It comes in a can of powder, and is easy to mix. We mixed it in water in shaker cup with wire ball in it. We used ice water in the blender to mix it to a smoothie texture.
We made our own EEN by using the Allison Siebecker’s SIBO self-made formula. We ordered the protein from JoMar Labs and mixed in honey for carbohydrate. For the oil, we used Brain Octane Oil (BulletProof product of MCT from coconut oil).
Our son seemed worse on the Modulen drinks. His symptoms were worse than before: tummy pains after having the drinks, high temp, darker eyes, feeling exhausted. I have a gut feeling it’s not agreeing with him but the doctors won’t listen. They say its totally hypoallergenic so it shouldn’t cause any problems . We will check other types of EEN.
We ordered Absorb Plus product. The carb component is coming from cassava plant, but the corn syrup in Modulen is worst…
We let him place his own feeding tube nightly for night feeds, then pull it each morning. It’s not difficult to do. He got lessons on how to place the feeding tube by himself.
My daughter had an EEN nasal tube at school for a few weeks and she had friends around to protect her. I also was proactive and went to her classroom to explain what she had and why.
We used Peptamen through an NG tube for the first 2 weeks as it is easier to get the needed volume and calories.
My daughter was on EEN exclusively for 5 months before we started SCD. We used Boost Plus. She went into remission without the use of any medications.
My son was on exclusive enteral nutrition for 8 weeks to gain remission. He is now on SCD alone, but not symptom free yet, still working to normalize lab markers.
We chose Modulen IBD (powder in can) due to a study comparing it exclusively for 8 weeks to oral steroids and it showed better mucosal healing. We ordered it from Canada.
Studies and presentations
This study by Prof. Arie Levine, Nutritional Therapy of Crohn’s Disease in Children, in our opinion, is the best presentation about exclusive enteral nutrition as a preferred option to treat flares and achieve remission.
This study, Enteral Nutrition in Crohn’s Disease: An Underused Therapy, used either elemental or polymeric formulas only. No other food was allowed except water.
Enteral Nutrition in IBD, Amit Assa M.D
Schneider Children‘s Hospital, Tel-Aviv, Israel,
Use of exclusive enteral nutrition in adults with Crohn’s disease: A review, World Journal of Gastroenterology.
Great article. I wish I would have had access to it at diagnosis. Our doc pushed prednisone as most docs do and we didn’t know what we were dealing with so we followed the advice. But after much research, we decided to switch to EEN and have not looked back.
There was very little helpful info out there about EEN for parents and we struggled with choosing a formula. We hated them all but we hated prednisone worse. If EEN was going to work, our son had to be committed. So we let him pick a formula that he found acceptable and we went with that. We would focus on ingredients and diet after EEN. For the time being, getting off prednisone and achieving remission was top priority.
On prednisone, our son improved, but he suffered side effects and getting off was painful. His labs were improved but not perfect. On EEN, he had no side effects and at the end, his labs came back normal.
But EEN was a godsend for two other reasons. In researching EEN, I stumbled upon the Seattle study and I was introduced to SCD for the first time. I don’t think I would have found SCD had I not been so diligent looking into EEN. And while EEN gave us the chance for remission without prednisone, SCD gave us hope for maintaining that remission without drugs or with reduced dependency on drugs. No one had told us such a possibility existed.
Second, for the two months while our son was on EEN, we learned how to live this diet without the pressure of knowing if we made a mistake, our son’s health could suffer. I learned to cook, shop, budget, and manage my time. I learned how to keep enough food items ready to go that no one goes hungry or lacks any nutritional content. I found alternative versions of foods my family loves and I found new recipes to replace things that could not be imitated. I learned which food items were legal and which were not and where to find legal options.
Last week, when my son got his labs back, we were given the go ahead to start SCD. He is now 100% SCD – a transition that I would have failed miserably at without the last two months of experience. The transition is stressful as we do not know how he will do on the diet and we are afraid of foods that may be triggers and such, but at least that is all I have to worry about. The rest is old hat already. Thanks to EEN.
Thank you for sharing your experience, it is so helpful for those who struggle with IBD when they can learn from firsthand experience. Here is the latest study about EEN and IBD, just published this month. The study conclusion is no surprise: Exclusive Enteral Nutrition Induces Remission in Crohn’s Disease As Effectively as Corticosteroids, Study Finds. https://ibdnewstoday.com/2017/08/28/crohns-therapy-exclusive-enteral-nutrition-as-effective-as-corticosteroids-in-inducing-disease-remission/
We started SCD but not after EEN. My son (Dx CD in 2015) is 15 and he couldn’t drink Ensure more than 10 days. He hated so much, he was not drinking enough. Did your doctor tell you to do SCD only when his lab is good?
No. Our doctor originally put our son on Prednisone to induce remission, but he had too many bad side effects from that, so we switched to EEN to get him off the prednisone.
We wanted to do EEN first for three reasons: studies have shown it to be very effective in inducing remission, it gave me time to learn how to do SCD before my son was depending on me to get it right, and we thought SCD would be easier to start if he was symptom free when we began. When symptoms are present, it can be hard to tell what foods are tolerated and what foods aren’t and many resort to stages to navigate this. While we used stages as a guide when picking foods to introduce (we didn’t want to introduce a lot of advanced foods all at once), we still jumped around a bit to get more variety in the diet. Strictly following stages can be much more difficult and limiting, but may be necessary if symptoms are present.
My daughter is 28 & is due for surgery to remove her small intestine in 10 weeks time she was given ensure plus to take solely to calm her stomach beforehand, it made her so ill every time she drank it, nausea, headache, bloating, diarrhoea immediately after drinking it, fatigue & cramping .. she is now on modulen and is doing so much better 🤗
Wishing your daughter fast and easy healing! Hopefully EEN can help her heal fast and possibly avoid the surgery, or at least help her be in good shape before the procedure and heal fast after.