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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Want to start EN but I need advice!


07-03-2012, 09:58 AM   #1
puppylove
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Want to start EN but I need advice!

I would really like to start EN in the next couple of days (to give my gut a rest and hopefully help heal a fistula) but I have so many questions before I start:

1) Is it safe to start EN without consulting with a doctor/dietitian?

[I will likely try to get a dietitian eventually because I do want to check my vitamin/mineral levels and be sure I get proper nutrition however it may take a few weeks to find one and/or get an appointment. Would it be ok to start EN and then follow-up with a dietitian in a few weeks?]

2) In Canada, what are options for EN brands/types? I will be taking EN orally and likely need the type w/ partially digested proteins (I forget what that's called...). I find it hard to understand which brands represent which types of EN.

3) Would I buy these products at a health-food store or at a pharmacy?

4) I have read that typically one does EN for 6 weeks and that it should be introduced 'gradually', but what does that mean specifically? Would I drink a half packet/can on the first day while still eating normal foods, then one full portion the next day to replace one meal? [this means introducing EN would take nearly a week - does that count of 1/6 weeks?]

5) Any other tips or information from your personal experience?

Thanks so much in advance. I'm really hoping EN will be good for me since I've read so many great testimonials re: EN on this site.

~puppylove
07-03-2012, 09:59 PM   #2
David
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Hiya puppylove,

1. I think it's always a good idea to consult with a doctor. EN is very safe but I think keeping your doctor in the loop is a good idea and they may think of something we don't.

I can't answer the others but if you're going to utilize EN, reading this book can only help.

Best of luck!
07-03-2012, 11:20 PM   #3
Tenacity
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You should always consult your doctor. However that doesn't mean that all GI's are supportive of EN. So keep that in mind. Sometimes we have to take the initiative unfortunately. Peptamen, peptamen 1.5(by Nestlé), pivot, pivot 1.5! Elemental 028 are all the types you are looking for. You have to order it. Maybe call nestlé and ask what the best course of action is for you to get them. Not sure how your tier 2 health system works there.

You average how many calories you would need in a day. Your goal is to replace those calories from food to drinks. So if each drink is 350 calls, and you need 2000 calories a day = around 6 cans. Start out with 2 cans the first day. Add 1 can extra a day till you get to your set amount to offset calories lost from solids.

Expect gas and a bit more d in the beginning. Keep gas x on hand the first week. Especially if you are already inflamed means more gas from en. Don't chug the drinks. If you get canned drinks that are more than 250 calories per serving, then dilute it with an extra 90 cc/ ml Of water per serving. This will help osmolarity level = better absorption.
07-04-2012, 05:48 AM   #4
SarahD
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Hi puppylove,

Personally I'd be reluctant to start EN without consulting with a dietitian first. I don't know how it works in Canada, but in the UK you need a prescription to get EN so it wouldn't be possible to do this without consulting a doctor or dietitian first anyway, but it might be different where you are. My big concern is that you could buy something that isn't right for you (there are a few different types of EN, some more appropriate than others for IBD) and that you'll be guessing at the quantity required. The quantity of EN required is usually based on your calorie requirement, but that will depend on your weight & height and your activity levels. My feeling is that it's not something to be second guessed, EN is a medical treatment which could have serious implications for your health if you get it wrong. My dietitian was also useful in telling me what to expect, and as someone who I could call for advice if I had any problems or concerns. Also for monitoring progress. You should also think of what will happen once you stop EN (e.g. elimination diet, LOFFLEX diet, etc), and it's best to have a dietitian to help advise on this.

With respect to introducing the EN gradually, I was on elemental extra 028 and my full dose was 8 cartons a day. I did 2 cartons on day 1, 4 on day 2, 6 on day 3 and then 8 from day 4 onwards. I didn't have food on those 3 days whilst building-up, just the EN. It's not a good idea to introduce it too slowly because you won't be getting sufficient nutrients over those build-up days, but not too fast either to allow your body to get used to it.

Your questions are exactly what you should be thinking about, so it's clear you've put some thought into EN and you wanting to do it is probably the biggest factor in being able to stick with it. Best of luck if you decide to go ahead with it!

Sarah
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Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
07-04-2012, 11:41 AM   #5
puppylove
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Thanks David, Tenacity and SarahD for your comments and the extra info!

I contacted my GI doctor's office for an appointment and found out that I can email specific questions in place of an appt (!) so I did that this morning. I asked about recommendations for EN - specifically, any knowledge he has about it, brands/products he recommends, and whether I need blood work before starting. I also asked for a recommendation for a nutritionist. So, we'll see what he says about all that - but really happy that emailing questions is an option with this doc.

The specific responses from Tenacity and SarahD are really helpful - and yes, SarahD I have done a lot of reading and thinking about it already so I was happy to hear that I'm on the right track with my questions! It probably helps that I have a background in medical research (currently finishing my PhD in Medical Science - i.e., medical research)

If I get the green light from the doctor, ideally I'd like to do EN for 6 weeks then start the elimination diet. The LOFFLEX diet seems to not work for quite a few people, and considering I'd like to be as gentle as possible on my system (especially because of the fistula) I'll probably not try this first.

~puppylove
07-04-2012, 12:15 PM   #6
SarahD
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That's great puppylove, hopefully your doctor will be open about EN and will let you try it. Let us know how you get on and if you have any more questions feel free to ask.

Sarah
07-08-2012, 11:29 AM   #7
puppylove
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Hi again,
I still haven't heard back from my GI doctor, but decided to get some 'liquid diet' products anyway (after talking to a pharmacist) and to try introducing them slowly. I bought 'Ensure Plus' - the only one available at that pharmacy - and drank one can (355 calories) for breakfast yesterday - while still eating meals the rest of the day. Today I'll drink two cans - the pharmacist said that if I use the products as meal/snack replacement while still eating, it shouldn't be harmful but may still give my gut a partial rest. I hope to speak to my doctor soon to see whether it's safe for me to switch to a fully liquid diet....

BUT, in the meantime I've been reading a lot of info about different diets for Crohn's (SCD, GAPS, macrobiotics) and all of them say to avoid milk and sugars. Well, 'Ensure' is full of milk and sugar! So now I'm wondering whether switching to a liquid diet (with Ensure as the main staple) may actually be harmful or bad for me.

Does anyone have any advice about this? Do the benefits of liquid nutrition outweigh the negatives of milk and sugar??

As a side note, I'm also introducing miso broth and basil tea daily and will be getting my hands on a powerful juicer within the next week - that I hope to use in the near future (once I figure out what kinds of fruits/veg are safe and whether juices may be used as part of a liquid diet).
07-08-2012, 05:25 PM   #8
David
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Hi puppylove,

If you're lactose intolerant, sensitive to casein or sugar, etc, then yes, you'd obviously want to stop them. But if you're able to drink them without any problem, then more power to you. There's a million theories on what to eat and what not to eat and most haven't been formally studied. Conversely, enteral/elemental nutrition has been studied and has been shown to work. And quite well at that to the point that, as long as you're not sensitive to them, then the benefits outweigh the negatives in my opinion.
07-08-2012, 05:48 PM   #9
ravensfan88
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Hi again,
I still haven't heard back from my GI doctor, but decided to get some 'liquid diet' products anyway (after talking to a pharmacist) and to try introducing them slowly. I bought 'Ensure Plus' - the only one available at that pharmacy - and drank one can (355 calories) for breakfast yesterday - while still eating meals the rest of the day. Today I'll drink two cans - the pharmacist said that if I use the products as meal/snack replacement while still eating, it shouldn't be harmful but may still give my gut a partial rest. I hope to speak to my doctor soon to see whether it's safe for me to switch to a fully liquid diet....

BUT, in the meantime I've been reading a lot of info about different diets for Crohn's (SCD, GAPS, macrobiotics) and all of them say to avoid milk and sugars. Well, 'Ensure' is full of milk and sugar! So now I'm wondering whether switching to a liquid diet (with Ensure as the main staple) may actually be harmful or bad for me.

Does anyone have any advice about this? Do the benefits of liquid nutrition outweigh the negatives of milk and sugar??

As a side note, I'm also introducing miso broth and basil tea daily and will be getting my hands on a powerful juicer within the next week - that I hope to use in the near future (once I figure out what kinds of fruits/veg are safe and whether juices may be used as part of a liquid diet).

Just to ease your mind about the milk ingredients for Ensure. It is suitable for those who are lactose intolerant - so that shouldn't harm you.

The sugar, however, is a different story. Everyone reacts differently to it.
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Ursodiol 500mg - twice daily
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07-08-2012, 06:01 PM   #10
puppylove
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Hi David and ravensfan88,
Thanks for your replies - I did some more reading and discovered that Ensure is, as you said, lactose-free. Yes it's still loaded with sugar but I suppose only time will tell whether I can tolerate it or not... From what I've read in other EN threads, it may take 2-3 weeks to notice an improvement with EN so I guess I'll just have to wait and see.
Thanks again
07-08-2012, 06:04 PM   #11
David
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I didn't realize it was lactose free. Good to know!
07-08-2012, 06:18 PM   #12
puppylove
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Hi David,
Yup - Ensure is lactose-free but still contains other milk proteins (therefore suitable for people who are lactose-intolerant but not those with a milk allergy.

Ensure is also gluten-free FYI.
07-08-2012, 06:35 PM   #13
Keepingfaith
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I just wanted to pop in & say that Ensure does carry lactose & gluten free alternatives. When I was in the hospital I was told to ask my pharmacist to order me 'Ensure Enlive!' It is gluten and lactose free. It comes in a juice box that is aout 8 ounces and has 200 calories per 'carton'. When you order it, there are about 64 ensure juice boxes per case. It doesn't have any fat though in it. It comes in apple & wildberry flavor. I used it for a while as a meal replacement when I wasn't hungry. It looks just like a juice box so I didn't feel out of place at the lunch table when I drank it. It's texture is like a thick juice. It has a filmyness to it that coats your tounge but it tastes better than regular ensure, is smaller, and lactose free. I liked that. It is made specifically for people with a bad lactose intolerance.
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Current medication:
Entyvio
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Diet: Feeding via J-tube

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Previous Medications:
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07-08-2012, 06:39 PM   #14
Catherine
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I think if you look in the parents forum you will find lots of parents who have children doing EN. Hopefully I right and tesscorm lives in same city as you and has a 17 year old who is using this treatment
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
07-09-2012, 02:19 AM   #15
SarahD
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Just to add, I think most EN contain high amounts of sugar. This is because they generally contain the nutrients you need but in a broken down form so your digestive tract doesn't need to do so much work. Carbohydrates get broken down into sugar, hence the high sugar content. The sugar probably also helps keep it palatable too....
07-09-2012, 08:30 AM   #16
Tesscorm
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Hi Puppylove,

Happy to share my experience (through my son) with EN. It was his first treatment and has been his only maintenance treatment since last May. He's responded well, has taken him into clinical remission, however, meds may have to be added as the EN is not eliminating ALL inflammation. However, it has certainly eliminated all his symptoms and he is living a very crohns-free lifestyle.

The formula he has used is Tolerex (by Nestle), however, he ingests it overnight through an NG tube - during the day, he eats a normal diet (his only restrictions have been seeds, nuts and 'limited' veggie/fruit skins). We do try to limit his junk food (altho pizza, McDonalds, etc. haven't been completely eliminated ) and, while not completely avoided, I try to moderate fibre intake.

The first six weeks was exclusive (formula only) and he took in 3000 calories per night. To reduce the volume, the dietitien concentrated the ratio (ie, package states 1 pkg with 225 ml of water, we use 150 ml of water) - this has not caused him any problems. He did start slowly but, as it was a 'rate on the pump', I can't say how much he had per day - started at 20 or 50 ml/hr, within 24 hours was at 200 ml/hr for 10 hours (which was full dose). He was given the range of 200-300 ml/hr, depending on how he felt and now does 250-300 ml/hr.

While on exclusive, he was allowed clear fluids during the day - broth, jello, freezies, popsicles, gatorade, clear pop or juice, clear candies (lifesavers) - no chocolate or caramel flavours, no 'dark' pop (ie. coke), no fibre in juice. (But, I've read of many GIs who don't even allow these fluids...)

When the six weeks ended, he reintroduced foods gradually - each step was 3-4 days (more if needed)

1. 'white' foods - bread, rice, pasta, plain cereal (no milk), plain muffins (he was allowed a bit of toppings (low fat cream cheese, butter, etc.)
2. proteins - any type but I stuck with chicken, eggs, fish
3. fruits/veggies - soft or cooked, no skins, seeds or membranes (skin around orange segments)
4. dairy - low fat
5. all else as tolerated

His maintenance dosage has been 1500 calories/night, 5 nights per week.

A comparable formula that I know of is Modulen, which is 'drinkable'. Dietitien recommended that we NOT concentrate the Modulen, if we wanted to switch formulas. A doctor/nurse would have to teach you to use the NG tube but, my son prefers the tube to drinking the shakes - little impact on his life, he inserts tube before bed (takes seconds), runs pump overnight, removes tube in the morning and doesn't have to worry about drinking shakes during the day.

You don't NEED a prescription for these formulas but you will if your insurance or other agency can cover the cost. If your insurance doesn't cover it, your local CCAC may cover the cost for a little while, also Trillium (Ontario health insurance program) will cover a portion of the cost.

There is a health food store in the Hospital for Sick Children which sells the formula (for sure Tolerex and, I would assume, Modulen). I would imagine that other healthfood stores could order it in for you.

As was said in other posts, I would recommend EN be done with the guidance of your doctor and dietitien. As a reference only, my son was 5'10", 127 lbs when he began (had lost 20+ lbs prior to diagnosis) and is now 164 lbs. but, I don't know how the dosage is actually calculated.

If I can answer any other question, please let me know... Good luck!!!
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
07-10-2012, 06:17 AM   #17
helena101
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Hi puppy love! Best of luck with EN. Another poster from Alberta had great success with Vivonex plus, can you get a hold of that? I think since milk derivatives are such a common trigger food for us crohnies, it would be worth it to find a brand that was completely milk free. I used elemental 028.
I also did the elimination diet (1 year in and I've been really well) so if you need any help with that please feel free to get in touch.
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