Trying EEN for the first time

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greypup

greypup

Joined
Apr 29, 2013
Messages
336
Location
St. Louis, MO
At Mayo this past week, Dr. Tung recommended that my daughter try EEN for four weeks as an alternative to entocort.

So this week she is going to start and I have a couple of questions.

Are juices, such as fresh squeezed orange juice, ok?

How about gum and hard candies?

Are there other drinks that are okay? Water?

How soon might she be able to feel relief?

I'm sure I'll think of more but that's it for now ;)
 
It depends on the Gi

The gut reacts to the proteins in the food or juice etc..,
In EEN the protein is broken down or minimized.

For DS he was permitted a few dum dums a week or a table spoon of table sugar sprinkled on ice chips for chewing .And water only
He did EEN ( peptamen jr) for 9 weeks instead of pred .
 
My son was allowed clear liquids and a small amount of hard candies (ie Lifesavers) or gummy bears. For clear liquids he had things like pop, iced tea, apple juice and clear broths. I find it curious that all of these items are high in FODMAPS. Perhaps that is why we didn't see a big improvement in terms of abdominal pain while he was on EEN. If I had it to do again I would only allow the broth and I would make it from scratch without onions or garlic.

Good luck with the EEN. It is tough but I think it is very worthwhile to try it. We used a lot a distraction at meal times and rewards (aka bribery) to help get DS through it.
 
My son was only allowed chewing gum and Fox's Glacier Mints (hard sweets) and water. Good luck hope it goes well.
 
My son has done een three times he was only allowed water, 7up black tea and coffee clear mints and chewing gum it worked well for him.
 
Violet's been on formula feeds for 5.5 years, since diagnosis, with a period of EEN of six weeks' duration last May.
She uses an NG tube that she inserts herself each night, and then removes in the a.m. Easier for her than drinking the formula, and pump rate can be adjusted to accommodate what they can handle at a given time.

During her exclusive period, she was given only water, though her GI said she could have gum as well. He also says chewing gum (the action of chewing) aids gastric motility.

We have a lot of experience with formula feeds, and Violet will turn sixteen in January. PM me if you like, if any specific questions.
 
My son also did it overnight through NG tube. During the exclusive period he was also allowed clear fluids like pop, clear juices/fruit drinks (no fibre, pulp), broth, hard clear candies (like Lifesavers, no chocolate or caramel), jello and popsicles/freezies (no chocolate). The broth was the biggest help - he took some in a thermos to school so he could eat with his friends and I arranged for the school to keep a supply of freezies for him. He would have broth again at dinner. I changed up the 'flavour' of the broth by heating it up with various spices/herbs and then strained to removed the spices/herbs.

Distraction was also key - as he didn't 'eat' all day, he'd start to feel hunger by early evening.

It worked very well for my son and, after the six week exclusive period, he continued on for approx. 2 years on a supplemental basis (1/2 formula dose with a regular diet added back). Prior to beginning EEN he had one week of IV flagyl and the only other med he'd taken was nexium - the nexium together with the EEN and then EN reduced his inflammation but did not completely eliminate it (although it kept him in clinicial remission), so we eventually added remicade. But, he does still continue drinking 1-2 Boost shakes per day (not using NG tube anymore).
 
Only water, hard candy like dum dums , gummy bears and gum. We just finished 6 weeks the beginning of November which we did instead of pred. He started feeling symptom relief after a week or so. It was harder when he started feeling better because then he wanted real food.
We tried to make dinner no big deal, we usually all sit down to eat together but did not while he was on EEN. and I made a lot of food he does not like.
Good luck
 
We did it only for a short time. Caitlyn was allowed clear liquids and chewing gum. She didn't do so well on it. it was rough for her. we had to bribe her with $100 towards an iPad for every week she got through on it.
 
O did 8 weeks EEN drinking 8-10 shakes a day. Only water and one piece of gum a day. She felt relief within days. It was our magic bullet to remission. If she ever flares again our plan is to hit it with another course of EEN rather than steroids...not so sure what her plan is though.

Good luck!
 
I found out yesterday from our St Louis GI that the guidelines for EEN have changed and now include Boost and Ensure so we all don't have to rely "exclusively" on the prescription formulas which aren't as palatable, if at all.

She tried Boost last night and was pleasantly surprised.

Mayo prescribed 4 weeks to achieve relief from the minor inflammation she's having.

I guess it looks like I need to buy gum and hard candies and maybe an occasional soft drink and broth to help her get by these next 4 weeks ;-)
 
Yep! O did Boost and Ensure. Check with your doc though because ours was pretty emphatic about nothing but water and one piece of gum.
 
Glad they are letting her use boost and ensure. We used peptaman jr I think if I remember correctly and Caitlyn hated it.
 
We tried EEN at diagnosis 6 months ago and M couldn't handle it either. She tried but couldn't. She was SO surprised when she tried the Ensure.

Apparently there has been studies published in the last few months that show that Boost, Ensure, etc are just as effective. That should also help save some from having to use the NG tube, at least those who use it b/c the peptaman isn't tasty.
 
We were told only gatorade or water was allowed and he has to drink at least 20 oz of which one he wants. His pump runs continuous 24/7 with his Pediasure 1.5- So far so good. Just this morning he had somewhat formed stool and he was so excited that he had no pain. That hasn't happened for over 14 months.

At first he was excited because he likes gatorade. But You know how that goes. Too much of anything makes you sick of it. So today I've put water down his tube at different times throughout the day. (If I'd add it to the bag I'd have to recalculate the rate they have figured out is best for him)

We tried drinking it awhile back. It worked for a couple days. Then my son would take hours to drink one... it was grueling. We also did the night feed/dinner- (90% of caloric intake) that didn't bring remission. I think total EN is the key.
The tube is the easiest I think over drinking for us. (At this point...since my son is on board 100% now)
 
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Kathy,

Whatever it takes, right? I'm so glad the tube is working for Brian. We tried the tube awhile back for feedings and just recently for contrast test. M does not tolerate it. I wonder if it's because she broke her nose a couple of years ago.
 
Brian'sMom, V had the 24/7 pump thing for the first 30 days and I bet it helps your boy.
She got 10-12 cans per 24h, 3000or so cals. She was so malnourished at the time. She had immediate dramatic results.
After 30 days she was able to go about six hours off feeds, then gradually longer and longer. Now feeds are only 4 hours, 1000cals at 250cc/hr.

Greypup, just a thought, did she try a VERY SMALL NG tube? Violet's is INFANT sized, 8fr. Even though she is a big horse now, she still uses the same size tube. Far easier to pass than large tubes they sometimes use.
 
Didn't think about sharing tube size until I saw Imabovitall's post. We also use an infant tube. Ours is 6french. Even smaller than Violets.
 
I also think tube size makes a BIG difference. My son also used a 6 Fr sized tube. We were also told to removed the guide wire from the tube BEFORE he inserted it. By removing the wire the tube is super soft and flexible, very similar in size and feel to a piece of spaghetti.
 
I don't know, we never had an issue with getting it past the stomach valve. He would swallow water as he put it in but I think that was to get it past epiglottis. Once it was past the epiglottis it would just kind of slide right down as he kept feeding the tube into his nose. I imagine the stomach valve would open to most anything that puts even a little bit of pressure on it as it would have to when we do things like drink water. Without the wire the tube is WAY more soft and flexible and, I imagine, more comfortable. Removing the wire was just one of the instructions they gave us when we learned how to use the tube and I never questioned it at the time but I think it likely made the whole process much easier for my son. I wonder why the tubes have the wire if they can go in so easily without it.
 
Any time they have tried to give the tube to my daughter, I think it's been size 10 and most likely has had the wire. She watched the you tube videos and we haven't been able to understand why this doesn't work on her. Now it's beginning to make sense.
 
Re the size, Stephen also used 6fr - he was also a bigger guy but never had a problem due to the 'small' size of the tube.
 
Our Gi Dietician is so nice and very honest. She admits that this total EEN is new to their office. They've been to many conferences and have learned how well it works. And in Europe its widely more used than in the U.S. She said the doctors are the ones that have gone to these conferences and not her. She is getting knowledgeable as quickly as she can. So I have a question for all you EEN experienced mom's that your cities use this more often. When you talk of the Freezies, jello, and dum dum suckers, How often is this additional stuff given? We are in week one but I want to prepare for when it gets even harder for my son to not eat. Our dietician is gathering stuff too.
Thanks :)
 
Our GI's dietitien didn't give us a limit??? When I asked, she just said to keep it in moderation because of the sugar.

At the beginning, his girlfriend (and I) bought him gummies, lifesavers, etc. but he quickly tired of the sweets and stopped eating them on his own. I left a box of freezies at his school for him to have at lunch and am 'guessing' he would have a couple each day (he also went through EEN during the summer - so even more likely to have the freezies). But, even with these, he did tire of the sweet flavour.

What he had most often, though, was broth. He would have 3-4 bowls/mugs of broth each day.

Ask your dietitien what she thinks of allowing broth - not all GIs allow it. Or even herbal tea...

Have no idea if this sort of 'professional courtesy' is the norm amoung dietitiens/IBD clinics but, Hospital for Sick Children has lots of experience with EN (head of IBD has led/been involved in EN studies, reports, etc.), perhaps your dietitien could call HSC's IBD dietitien to discuss, colleague to colleague???
 
Gee IDK because O wasn't allowed any of it. What I can tell you is it got easier after the first week. She was healing and feeling better and happy as a clam. It got hard again towards the end. Someone in the GI's office let it slip that we were entering our last week and that week was tough.
 
Tesscorm said:
Have no idea if this sort of 'professional courtesy' is the norm amoung dietitiens/IBD clinics but, Hospital for Sick Children has lots of experience with EN (head of IBD has led/been involved in EN studies, reports, etc.), perhaps your dietitien could call HSC's IBD dietitien to discuss, colleague to colleague???
Click to expand...

Yes, You had sent me some info on this and I have been on that website again recently. I was thinking of passing on the info. This Dietician our GI clinic works with is very nice and welcoming of info. Thank you Tess!

crohnsinct said:
It got hard again towards the end. Someone in the GI's office let it slip that we were entering our last week and that week was tough.
Click to expand...

Funny you say that because I haven't given any hints to ds about how long it will be. I actually haven't been told either. Right now I think its best if we both don't know!!
 
After gathering the info from this thread, I called our GI's office the following day and she said to allow only a few hard candies a day and water. So she doesn't want any chewing gum, tea, etc.

M just finished her first week. At times it's been good - ok and other times, challenging. As advised on this thread, the rest of the family isn't eating regular family dinners but just kind of grabbing stuff and eating on our own.
 
We did EEN with DS for 9 weeks.
We continue to eat dinner .
He could sit with us for the first ten minutes of conversation then he was allowed to go watch tv and drink . Some days he had a bowl of shaved ice to chew at the table .
We paid him at the end of each week he finished .
We also didn't know how long since we were told six weeks at the beginning.
Better to not know
Week 2 was hard and the last week .
 
greypup said:
After gathering the info from this thread, I called our GI's office the following day and she said to allow only a few hard candies a day and water. So she doesn't want any chewing gum, tea, etc.
Click to expand...

After the trouble my son has had over the past many months...I'm sticking with what we were told for now too. Our son was told to drink at least 20 oz of fluid each day. That can be gatorade or water. A hard candy here or there. So I'm thinking...Gatorade has sugar, so the days he has a hard candy then less Gatorade that day and more water. I agree with you Greypup, that a sit down dinner makes us all feel bad. My older son will be home for a month from college starting this weekend. Its going to be hard over the holidays I'm sure. But my son is feeling better so that motivates him to keep on track. He has felt so poorly for a long time now. So this week of relief is a blessing for him...at holiday time :)

Good luck to you also :)
 
One thing for the holidays if your child is"drinking" is orally.
we got fancy holiday disposable coffee cups and fancy straws with funny holiday things on them.
this way the rest of the relatives didn't "know" what he was drinking and he didn't have to smell it either.
 
Bribery, rewards, whatever you want to call it worked well for us. My son really wanted pet piranhas so we promised to get him a large fish tank and some piranhas when he finished EEN. He spent meal times researching how to set up the tank, etc. It worked quite well, except now I have piranhas in the house...
 
A mani pedi a week in our house! For sure good days and bad. On the bad days, just agree with them...yeah this sucks but it isn't forever and you are getting better. My daughter didn't do it over a holiday but during end of school celebrations and bar and bat mitzvahs and a wedding. Being Italian and a total sweat hog...I don't think there is a good time to give up food and I think these kids are totally awesome!
 
greypup said:
Today, day #9 of 28, has been tough. She perked up when I pulled out a gift...
Click to expand...

When it comes to EEN........................................
:ymad:Sometimes you just have to be tough (went to the toy store weekly), it doesn't matter if they don't like it (bought her 3 pairs of princess slippers). You are the BOSS (2 Teddy bears), she is the KID (1 Dream lite pillow buddy). TOUGH LOVE is my motto (she slept in bed with me and kicked all night).:ymad:
:ylol::lol2::ylol::lol2:


I'm glad she perked up. HUGS
 
Yep we paid him
Grandparents paid
Toy store loved him
Need I say more.

He still drinks it as a supplement for free though ;)
 
I haven't paid... makes me think I should think of some cool prize to award him. My son wants so badly to get better and get on with life that that has become his sole motivation. (breaks my heart)...
We are in just week 2... so he may get to a point where he needs some extra motivation. With Christmas in a few days and his Birthday in Feb... I run out of ideas from the toy store. Maybe a trip with me and my husband. I think I'll start saving now
 
No bribes here since his choice was EEN or prednisone and he chose EEN. He did make food wish lists for when he was done and I think that was his motivation - What he was going to eat when he was done.
Anytime it got difficult we just told him he could do prednisone instead if it was too difficult which he absolutely did not want to do.
 
M stopped the EEN today.

It was day #13. She has a lot going on and it broke her down to big tears. She visited w/the dermatologist who wants to start her on Accuttane - we haven't found anything that has helped w/her cystic acne. While the inflammation in her small intestine might be improving, her acne was not and, in fact, might have gotten worse while on the EEN.

I've always thought that dairy is a culprit in her acne. In my mind it makes sense that her skin might have gotten worse on Ensure but it's up to her to want to figure out if she can tolerate dairy or not. At times she has agreed with this and other times not.

It's hard to deal with both as a 16 year old or at any age!!! And at the end of the day, if she has given her gut some rest but complicated her skin, then I suppose using Entocort isn't the worse thing.
 
Poor M! I have a 16 year old (almost 17), and getting her to do things she doesn't want to (like enemas) is an absolute nightmare. She refused EEN outright but we compromised and she still drinks 3 shakes a day (Peptamen jr). I think it's seriously impressive that M got this far!
 
Thanks Maya!

It's something else, trying to get teenagers to comply and at the same time honoring them as they grow into themselves.

I'm proud of M, too, for getting this far.

(((hugs))) to you and your M!!!
 
hugs
Is your GI Ok with accutane ( since its linked to IBD)?

Sorry to hear she is having it rough with the shakes.
 
Our GI is ok w/the accutane. Even the Mayo GI we visited is ok w/it too.

There was a colleague of the Mayo GI who wrote the paper that accutane could be responsible for triggering crohn's some years ago. The current thinking that both St. Louis dermatology and the Mayo GI cited to us is that patients who have crohn's sometimes have a manifestation of cystic acne and so they are not holding accutane accountable any longer, instead they believe that ibd is showing up in patients w/cystic acne b/c they are connected themselves. did i explain that ok?

a normal dose of accutane for M would be 60 mg. they are starting her on 10 mg and going very slowly in order to be as cautious as possible.

keeping my fingers crossed...
 
Gosh! Sucks being a teen and to have a chronic illness and the acne going on just sucks even more. God bless her for making it as far as she did. She gave her body a nice rest and some really good nutrition so she is much further along than she was. My non ibder has cystic acne, my ibder has psoriasis and my younger vitaligo. Skin issues drive my batty. I hope the Accutane works for her and doesn't complicate her Crohns at all.
 
Sorry it didn't work out after all the hard work for 13 days - then to have that awful side effect! I hope the Entocort works like a charm.
 
M is 4 days back on food and having started small dose (10mg) of accutane. She eased back into the solids and so far has tolerated the accutane. And by looking at her face, it looks like the skin issues have calmed down.

We didn't start the Entocort b/c she hasn't had any stomach pains or pooping issues. Hoping that maybe 13 days of gut rest helped.
 
Glad things seem okay just now. Hope the accutane works. I feel for her - I had really bad acne as a young teenager and it was horrible. It would be great if it works well!
 

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