News story of boy who uses enteral nutrition to treat Crohn's

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Writer
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   Posted 8/29/2010 7:44 AM (GMT -7)   
For those who are interested, here's a story (text and video) of a boy who uses enteral nutrition as his primary treatment for Crohn's disease. http://www.wndu.com/mmm/headlines/100401199.html

NiceCupOfTea
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   Posted 8/29/2010 1:35 PM (GMT -7)   
Enteral Nutrition must be given for six to eight weeks in order to induce remission and to maintain remission. The treatment must be continued for years.

Wut? How many years? skull

I've considered trying enteral nutrition, but I can't see my doctor going along with it - especially not at $200 per week. Plus I'm put off by the fact the disease comes back as soon as you start eating normal foods again. The only reason I'd try it at all really is just to experience remission for once, even if it's only temporary. And, hopefully, to heal the ulcerations.

Writer
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   Posted 8/29/2010 2:29 PM (GMT -7)   
They didn't get it right in terms of duration. Most people use it for 3 to 6 weeks and then get a remission of several months or more. Then they may choose to use another course of enteral nutrition to get back in remission. Others, after completing a course, switch to using two or three cans of formula per day alongside a regular diet in order to maintain remission. It's a rare case to have such serious disease that you relapse immediately after discontinuing exclusive use of the formula and have to use it exclusively on a semi-permanent basis. As far as cost goes, some formulas are pricey, others are a little less so, but the majority of insurers will cover it even if you have to go through their appeals process.

NiceCupOfTea
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   Posted 8/29/2010 3:42 PM (GMT -7)   
Oh okay.

Do you know if enteral nutrition would work for long-term, unremitting disease? 6MP doesn't seem to make any difference, really (at least going by symptoms) and I can't try the biologics. I have no conventional options left, but this would appear to be at least worth a try.

I'm in the UK, so I'm dependent on the NHS and an underfunded gastroenterology department for my treatment. Tbh, if it's really $200 a week (I had no idea it was so expensive), I don't think I would get it anyway. And I would feel a bit guilty about if I did... :/

Writer
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   Posted 8/29/2010 4:44 PM (GMT -7)   
Definitely worth a try, if you are out of options. It was originally tested in people who had run through the options available at the time it was first developed (steroids, sulfasalazine 6-mp, azathioprine, methotrexate) and it worked for many of those individuals. Also, there was a case report a couple of years ago of someone who had great success with enteral nutrition after Remicaid (and everything else she had tried before that) failed. Costwise, it's one of the many health-related products that are likely to be purchased much more cheaply by the NHS then by U.S. insurers. It's used far more frequently in the UK than in the US, so they must think it is cost-effective. Different consultants are more or less interested in prescribing it, depending on whether they trained in a hospital where it was used frequently. Best of luck, if you do try it. I hope it works for you.

Roni
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   Posted 8/29/2010 7:06 PM (GMT -7)   
Interesting article. I've been thinking about a liquid diet.
Why bother with tube feeding? Why not just drink the stuff?

Writer
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   Posted 8/29/2010 7:17 PM (GMT -7)   
Some people, especially those with severe stomach involvement, feel nauseated unless they take the formula very slowly, and for them the tube sometimes works out better. Others dislike the taste of the formula or would rather get all their nutrition overnight and not worry about having to drink it during the day.

Roni
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   Posted 8/29/2010 7:34 PM (GMT -7)   
So is it basically Ensures then?

NiceCupOfTea
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   Posted 8/29/2010 7:40 PM (GMT -7)   
Why do I have a feeling my own particular doctor would have zero interest in prescribing it...? :-/

Meh. I have a hospital appointment in October. I'll ask about enteral nutrition then. Just one last question, if you don't mind. Can you drink liquids or does that defeat the purpose of enteral feeding? I can cope with not eating for a few weeks (especially if I felt a lot better on it), but life without tea would be a sad one indeed.

Roni
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   Posted 8/29/2010 7:56 PM (GMT -7)   
LOL ncot. I agree.

Writer
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   Posted 8/29/2010 7:57 PM (GMT -7)   
I am happy to tell you that some doctors—especially those in the UK—allow black coffee or tea (no milk in it).
Roni: there are a variety of formulas, some whole-protein like Ensure, others based on peptides or amino acids.

Grandpato2
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   Posted 8/29/2010 11:15 PM (GMT -7)   
  scool Writer thanks for posting the link as it cofirms my thinking on this matter.The idea of tube feeding is to give the bowels complete rest. Recently in mid September I had an alergic reation to Gabapentine and 3 days and nights of vomitting. I was on a liquid diet for 5 days and soft foods for 2 more then I gradualy introduced solid foods. What followed was 15 days of major reductions in symptoms. It was wonderful. yeah about the 11th or 12th day I could tell my system was begining to return to it's previous state (flaring). I was as careful as I could be with what I ate but the symptoms did come back. Even now my pattern has changed, instead of random blockages at about 2 per week (a few days in pain and a day or few days in lower pain levels and repeat) My system has switched to 2-4 days of blockage (stricture) and then 4-10 days of little or no symptoms. I'm going to speak to my GI about enteral feeding, if I got that kind of results after 1 week then perhaps, (please) 2 months would be enough for remission.

ivy6
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   Posted 8/30/2010 12:22 AM (GMT -7)   
NCOT, my understanding is that NHS is pretty big on enteral feeding, though keener on using it in teens than for oldies like us, as the results tend to be better in adolescents.

However, if you've been denied access to Infliximab, this might definitely be worth asking about, and even arguing for. Hard. Be warned that this *may* require a long stay in hospital, depending on your health and the type of treatment decided upon.

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

NiceCupOfTea
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   Posted 8/30/2010 5:33 AM (GMT -7)   
I am happy to tell you that some doctors—especially those in the UK—allow black coffee or tea (no milk in it).

I thought that milk might not be allowed. Black tea without milk is horrible, so I would just have to drink black coffee all the time. And end up high on a permanent caffeine fix! >_>

Anyway, thanks massively, Writer. Your input on this subject is always really good and knowledgeable.

@Ivy - I've heard that the UK is meant to be quite keen on enteral feeding, but I've never seen any sign of it :/ To be fair, just because they've never offered it to me doesn't mean they don't offer it to anyone else. I bet that they do use it mostly for children and adolescents, however.

I'm definitely encouraged to ask much more seriously about enteral nutrition and argue my case for it, if need be. I was slightly taken aback by your warning about a possible lengthy hospital stay, but then I remembered that the NHS can't push an ill person out of bed fast enough, so I don't think there's much danger of that with me. I was just envisioning going on the shakes anyway, and not taking TPN. (TPN is intravenous, right..?)

dinkydee
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   Posted 8/30/2010 8:31 AM (GMT -7)   
What is the name of the enternal nutrition product? Is it always done by tube feedings? I thought you could also drink it?

vixen
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   Posted 8/30/2010 10:08 AM (GMT -7)   
Just thought I would add my two penny worth :)
You can simply drink it if you are ok with that (best chilled) if not and your body desperately needs the nutrition they will do it via nasal tube(threatened son with this if he couldn't drink it) Second what Writer says re drinking it slowly, one morning son was running late, drank it fast and became dizzy/sick. The only other things he was allowed was water to drink and foxes glacier mints(not the fruit ones-for some reason!!)
If I recall correctly TPN is delivered directly to the stomach via a feeding tube, whereas enteral nutrition is either swallowed or by nasal tube.

Nice cup of tea, maybe you could ask consultant for a referral to a dietician? We hit lucky with ours! They usually have several brands at the hospital(and flavours) which they were more than happy to give some of all of them to hit on the right type/flavour.

Rider Fan
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   Posted 8/30/2010 10:34 AM (GMT -7)   
Actually TPN is a different kettle of fish from enteral feeding. TPN is nutrition delivered by IV (ie. into the vein).

vixen
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   Posted 8/30/2010 10:59 AM (GMT -7)   
I stand corrected :)

Writer
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   Posted 8/30/2010 1:13 PM (GMT -7)   
Grandpato2,
Since you did so well with just a few days of liquids, maybe you could try a diet of 1/3 or ½ liquids, with the remainder regular foods. Perhaps it would be enough to keep you in remission.
 
NiceCupOfTea,
You are welcome. It's a subject I know well, since I wrote a book about enteral nutrition for people with Crohn's in the hope of making more people aware of this treatment option. (The book is available in the Healingwell bookstore under Crohn's disease.)
 
dinkydee,
There are a bunch of different products. As vixen has already said, you can drink it or use a tube leading to the stomach or small intestine, whichever you prefer.

Grandpato2
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   Posted 8/30/2010 10:42 PM (GMT -7)   
Ahhh, learning more I thought enteral feeding was intravenous, so I'd be more interested in TPN as I want total rest for my bowels. If specialist says no then I'll try enteral feeding. Writer I have cut back on solid food and it is helping. The importance of having a large break with no blockages allowed me to see how different foods affected my bowels. So I'm enjoying being able to learn what works and doesn't.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.

Writer
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   Posted 8/31/2010 7:35 AM (GMT -7)   
Grandpato2,

TPN and enteral nutrition perform equally well in clinical studies, so enteral is preferred to avoid the risks of TPN (liver problems, intestinal atrophy, infection risk). It seems to work because of a primary antiinflammatory effect, rather than by bowel rest as such. Unusual, I know.

Djin
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Total Posts : 265
   Posted 8/31/2010 9:41 AM (GMT -7)   
Very good topic, that appear from time to time. But this time, Writer has been a good "moderator"! Thanks!

When I'm in a flare (pain, no hunger, no gas, "blockage like") I always go on liquids - ensure like or Jini's drinks or safe smothies - and it always works to put me back on track.

Grandpato2 - when I was in Remi "alone" I had very similar simptoms... combining with Imuran gave me some relief. More time between flares, and now, about 7 months without one. (okay... some D, gas, etc. here and there, I'm still a cronhie!).

I like to think about enteral like a useful resource and, if necessary, a last bullet.
Male, 35 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 75mg Imuran + Iron (doc said i'm in remission, but I'm not sure at all)
 

NiceCupOfTea
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   Posted 9/1/2010 2:07 PM (GMT -7)   
@vixen - Never thought about a referral to a dietician. It's a good idea, but to be honest I would rather not have to contend with the waiting time to see one if my current GI doc can/will prescribe the stuff for me.

@Writer - I never knew you had written a book. I will look for it in the bookstore :p

Would it be asking too much to ask another couple of questions? Does this type of diet keep you feeling full up or do you feel hungry all the time? Also, would you come off your Crohn's medication or do you stay on it?

I promise not to ask any more questions after this! <_<

Roni
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   Posted 9/1/2010 2:20 PM (GMT -7)   
I bought ensures. They go right through me within an hour. They taste delicious, but the sugar content is so high!

So writer, having a liquid diet of ensures (even though high in sugar) can help induce remission of CD? For the ENT diet, should one avoid all other foods except the liquid diet?

I'm still considering this route, as it will help with my stricture too.

Poppysocks
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Date Joined Aug 2010
Total Posts : 105
   Posted 9/1/2010 2:33 PM (GMT -7)   
I haven't had much luck with my insurance company so far. I almost flipped on them today when I talked to them. I feel like I've made zero progress since starting to get this stuff covered a month ago.
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