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Crohn's Disease Forum » Treatment » Enteral Nutrition & TPN » Elemental/Enteral formula, maybe via NG, not effective for UC?


08-21-2011, 12:34 AM   #1
muppet
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Elemental/Enteral formula, maybe via NG, not effective for UC?

That's what Sarah's specialist told me tonight. Anybody disagree with this or have a source for or against?

I'm still convinced and will remain convinced that Sarah has CD, but her official diagnosis remains UC. Prednisone doesn't seem to be doing the trick for her in this flare, although we just upped it again so fingers crossed. I'm thinking an NG tube and some formula might provide some relief by way of bowel rest, but doc doesn't seem to be on that page with me for some reason.

Can anybody offer any insight? I'm sorry this post is a little brain dead but I'm way, way, WAY beyond tired right now.
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08-21-2011, 01:15 AM   #2
DustyKat
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Hey muppet,

When Matt started on an elemental diet I did quite a bit of googling about it. Unfortunately all the articles I read supported what the specialist is telling you. They came from varied sources but most stated that research showed there was no evidence to support an elemental diet was effective in UC. The rest just flat out stated that they do not work for UC.

Some of the articles did admit that diet does indeed play a role in reducing symptoms for UC sufferers as it does for CD and that the low residue diet could be of benefit.

Sorry I can't be of more help,
Dusty. xxx
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08-21-2011, 01:18 AM   #3
muppet
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Hmm. Thanks Dusty. I remain convinced that Sarah has CD and not UC, but I seem to be alone in that for now.
08-21-2011, 04:14 AM   #4
Mark in Seattle
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I've read the research reports regarding elemental diet, some of which assert that ED is as effective as steroids, while others claim that it is no better than placebo in terms of "inducing remission". I don't know what the literature says regarding UC specifically.

I use peptamen OS 1.0 myself, for CD. I get it by the case directly from Nestle via their subscription plan for $131/case. Or if I'm in a hurry, I'll orer it from Walmart, which costs a bit more, but they can ship it quickly for a few bucks. I do the vanilla because the chocolate gives me bad heartburn (I have gerd).

I talked to the Nestle folks when I started this stuff and it was their recommendation to use peptamen 1.0. I say this because there are such a myriad of variations to choose from.

I find the peptamen to be helpful personally. I've never had adequate discipline to stick with it exclusively for months at a time, but when I'm seriously hurting, I turn to it every time, so I guess that must say something about it being helpful in giving things a reprieve if not fully inducing remission?

For peptamen, I like the taste of the vanilla, and I typically look forward to drinking it and tasting it; the thought would never cross my mind of using an NG tube for this stuff. And after a coupe weeks of this stuff, I don't really miss food terribly, I sort of lose my craving/desire for regular foods and become somewhat content with the peptamen. But then sometimes I kind of get sick of the one flavor too. But it's plenty doable in my opinion.

Personally, I would not forego trying it just because of some research report. It strikes me as the most benign of possible therapies to at least try.
08-23-2011, 12:13 PM   #5
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I highly recommend you read the book Beat Crohn's! Getting into Remission with Enteral Nutrition by Margaret Oppenheimer.

This book explains enteral nutrition, the different formulas, the theories about how it works, and who enteral nutrition works best for (the young, the newly diagnosed). The book cites articles from medical journals.

Enteral nutrition won't cure Crohn's. But it can help get someone into remission.

As your doc has said, studies haven't found it to be successfor for UC. So many people on this forum have noted that they were diagnosed originally with one thing only to have the diagnosis change.

I agree with your feeling of giving it a try. The cons to trying it are the expense of the formula and the discipline needed by you and your daughter to stick with it. The pros are - there are no side effects you need to worry about.

I think it is worth a shot.

Good luck!
08-24-2011, 10:14 PM   #6
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My son was diagnosed with moderate Crohn's in May, he was given Flagyl for approx one week while in the hospital and started on Tolerex, an enteral nutrition formula through an NG tube. He was on Tolerex exclusively for six weeks (the only allowed 'foods' were broth, jello, freezies, clear juices). He is now on maintenance - 1/2 the dose, 5 nights per week. He inserts the tube each night and removes it in the morning (it truly only took him 2-3 days to become comfortable with the insertion and has a very easy time inserting the tube each night). In addition to the formula, he eats a normal diet.

When admitted to the hospital, he had lost approx. 17 lbs, had recurrent fevers, diarrhea and fatigue. Within a week of beginning the Tolerex, he was back to school, two gym classes per day (maybe at 75% participation) plus 1-2 hockey games per week. The fevers and fatigue were gone. The 'diarrhea' continued while only on the formula, however, not due to Crohn's but, according to dietitian, due to the fact that his only nutrition was in liquid form (diarrhea is also gone now) and he has gained 25 lbs. His only medication is nexium.

He has had 3-4 instances of mucus (sometimes with specks of blood), however, the instances are isolated, one time episodes (I think usually traceable to a greasy meal) and very small 'discharges' (although I'm not sure what amount of mucus would be considered 'typical'.

I know that the enteral diet doesn't work for everyone and my son has been quite lucky, however, there are no side effects, no negatives in trying. My understanding is that your daughter would not have to stop any medications to try the ED and, if nothing else, would gain some supplemental nutrition.
08-25-2011, 12:29 AM   #7
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seeing as it is a form of treatment not involving dangerous drugs and side effects, surely it is worth a try.
i heard it is more effective with children and younger people and effective if the disease is located in the small intestine as my GI told me its not great is the disease is in the large intestine.

i have crohn's in the large intestine (just had large intestine removed) but when i was 13 i was prescribed steroids and as the dose was reduced i was put on this elemental diet via NG tube for a year...it brought me out of a severe flare up but i wasn't totally 100%. i think it's worth a try.
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10-11-2011, 12:14 PM   #8
izzi'smom
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From what I've read, EN may not be as helpful for UC. Even if your dd HAS Crohn's, I am guessing that most of her disease is in the large intestine, which means it STILL is not proven to be as effective. DD has Crohns colitits (only large colon is involved), but we are still going to give it a go. I was willing to try Remicade, which only works in 40% of patients, because it was worth a try. So why wouldn't I try something that has no real side effects??
I did a bunch of reading and in one study, one out of 5 patients with large intestine involvement went into remission. 20% is better than nothing, right?
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