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Enteral Nutrition

New to this forum....so happy to have found it!
My 8 yr old son was diagnosed with Crohn's in July 2009 and was on prednisone and immuran for about the first 8 months....when his docs realized how severe his case was and that he was steroid dependent to stay in remission, they offered a choice of biologics (remicade/humira) or enteral nutrition. I am an RN who has cared for patients on tube feeding so I new we could do this....but new it would be a leap for Ben...having an NG tube taped to his face for a month at a time. But when I researched the biologics I couldn't believe the risks...frightening to me. So I decided to search for education on how to approach the tube feeding treatment....there was not much, even his docs wouldn't choose it for their own kids!! I finally found a book called, Beat Crohn's - Getting into Remission with Enteral Nutrition by Margaret Oppenheimer...this book was like EN for dummies!! It validated my thoughts on the safety and effectiveness of this treatment for my son to the point that it was a no brainer....he even read parts and bought in to it.
He started EN via NG tube in April 2010 and within the first month was off all meds and bouncing off the walls with energy....full remission. Pain was gone, and he started catching up on growth. Now he has a PEG tube so we can keep doing this treatment and the world doesn't have to know about it....

Here's my question...why don't more kids in the US and Canada choose this option? If it is due to lack of education and the unknown, or just scared to try....I am ready willing and able to talk to you, help out, show you how, etc.
At Ben's appt. in May this year, he has grown 4 inches in the past year and a half, and has gained 15 pounds!! Still off meds, missed hardly any school. He tube feeds for about 8 hours over night and can eat what he wants during the day....

What do other moms think about this treatment? Would love to hear your thoughts.....

Beth
 

Dexky

To save time...Ask Dusty!
He tube feeds for about 8 hours over night and can eat what he wants during the day....
Hi Beth and welcome!! I'm not a mom but anyway...how long has he been able to eat during the day?? I guess in some ways Ben not responding to traditional treatments has been a blessing for him.

My son has been kept in remission with meds so we never gave much thought to the alternatives. I am interested though so please stick around:)
 

Tesscorm

Moderator
Staff member
Hi Beth,

My son, 17 years, is being treated with EN via NG tube. He was diagnosed in May and given two options - steroids (with side effects) or EN through NG (without side effects). He chose EN (if he hadn't made that choice, I probably would have 'tried' to convince him but, at 16 then, he would have had to be on board...).

He inserts the tube each evening and removes it in the morning. It generally does not bother him at all. He has no problem with the insertion or removal and is comfortable having friends come to sleep over and, if curious, watch him insert the tube. Once in a while, he's annoyed with the process but no more so than when he's annoyed at doing any 'chore' :boring: .

The only medication he has taken for Crohn's was flagyl the week he was in the hospital and Nexium (antacid) since he started the Tolerex formula.

He's gained 30 pounds (had lost almost 20 prior to being diagnosed) and, for the most part, his symptoms are gone. He periodically has a bit of mucus, sometimes with specks of blood (approx. 1/4 tsp) but this happens only every two or three weeks. (This is being checked into with upcoming ultrasounds and MRI.)

The first six weeks was formula only but his maintenance treatment is 1/2 the dosage, 5 nights per week. The plan is for one year. Once the year is done, I have no idea what will happen :confused2: . The year will, coincidentally, finish the same week he turns 18; at 18, he will be transferred from the children's hospital and GI to an adult facility and GI.

During the day, he has a normal diet. As he ingests 1,500 cal per night, he is a bit concerned at the rate of weight gain but, as his regular schedule has started up again (school, hockey), I think the gain will taper off. Being back at school is also helping his diet as there are much fewer 'junk' meals with friends.

I also don't understand why this treatment is not more commonly used in Canada and the US. The GIs at our hospital explained that it is often the first treatment given to children in Europe but not in North America (apparently, even within it's limited use, it is more often used in Canada than in the U.S.). A couple of thoughts I have as to why... Many of these formulas are made by Nestle (Tolerex, Modulen, Peptamin, Vivonex) and Nestle is based in Switzerland. Perhaps there may be more contact/collaboration between Nestle and the local medical communities hence making European GIs more knowledgeable and comfortable with this treatment and providing doctors with easier access to formulas and information. I also wonder if it is a matter of cost... Tolorex is not covered by our insurance company (it's classified as only a nutritional supplement not a treatment/medication). So far, it is being covered by a local community drug plan but this is supposed to be a 'temporary' arrangement so I'm not sure how long this will last. Once it ends (hopefully, not any time soon!!!), the cost to us will be $500-700 per month. Maybe the formula is covered in Europe??? Or is less expensive as it's local???

Given that there are no negative side effects, I am really surprised that NA doctors haven't been more receptive or proactive at using this treatment.
 

DustyKat

Super Moderator
Hi Beth and :welcome:

So fab to hear that your son is doing so well on Enteral Nutrition, YAY!

It certainly does seem that the EN route is often taken up in Europe and not the US. It is a shame it isn't used more since research suggests it is just as effective as Prednisone in inducing remission, particularly in children.

I don't know why this is but would it have anything to do with the cost do you think? Since all other industrialised nations have some sort of socialised health care would the very cheap alternative that is Prednisone be what is favoured by insurance companies?

My son was started on EN in December last year but it didn't last long due to the complications of CD...fistula's and abscesses originating in the terminal ileum so surgery was the only option. He is doing well now though...:)

My thoughts are, if ain't broke don't fix it! While ever this regime is working I wouldn't change a thing.

Are the PEG feeds indefinite?

Good luck to your boy and I hope his remission last a lifetime!

Dusty. :heart:
 

AZMOM

Moderator
Beth - Welcome. :rosette2:

Our doc has briefly talked EN with us. Our big stumbling block has been that Claire has to have the immune suppression due to her arthritis so it would only address half our problem. All that said, we haven't ruled it out.

Ironically, Claire is 90th percentile height and 75th percentile weight. So maybe it hasn't been mentioned much since she isn't behind in terms of growth??? I don't know. It definitely wasn't one of the first options mentioned though. It always seems to come up when our medication options are waning. Our ped GI said he does have several teens that place their NG tubes on their own at night for the food and then don't wear them during the day.

We need more folks with EN experience on the forum so glad you are here!

Julie
 
Hi, my son is currently on the 8 weeks of modulin liquid diet. He couldn't stand the taste so has the NG tube in all the time. He really didn't like getting it in so is happy to have a long term tube.
As far as I can gather the liquid diet seems to be the first and most popular treatment for anyone diagnosed with Crohns in Scotland. So far they haven't mentioned anything else. We are almost half way through thank goodness. Poor boy has had to watch us enjoy 2 family birthdays and not be able to eat anything! Hope all goes well for you.
 
I am going to speak with the doctor again about this whole EN thing. I can't understand why American docs know nothing about it.
 
Hi, I'm new to this forum. My 11 year old son Josh was diagnosed with CD in June of the this year. I am also an RN, but Labor and Delivery, so I don't have much experience with gastric issues. I have been heartbroken watching my child go through this. We are seeing the only pediatric GI doc in the city. We began his treatment with 25mg prednisone, then after reviewing his EGD and Colonoscopy and seeing a fistula between small/large intestine, continued several loose bloody stools daily, he suggested Remicade. He had 2 doses of Remicade and was doing so much better, his color returned(he was no longer ghostly white), he gained weight and was much more active. Then, after going to church and a birthday party my 5 year old got a mild cold, which of course the whole family contracted, and Josh had a full blown relapse. It has now been about 4-5 weeks, back up to 25mg prednisone(we were down to 5mg), and another dose of Remicade. This has not seemed to help, so called doc today and he said increase prednisone to 30mg. Sorry this post is so long, I'm just hoping for some advise on where to go from here. He has never mentioned EN, but my husband and I were searching for alternative therapies and found this forum. Doc just keeps saying bland diet. We've been using boost as supplement, can we use this as complete bowel rest with just the boost orally instead of using NG or PEG tube. :)
 
Hi Josh'sMom,
Welcome to the forum.
Yes, you can us EN as his complete nutrition, but you should do this under the guidance of a dietician and with the knowledge of his doctor. If it doesn't go well, don't give up. Sometimes the formula isn't the right one-- I had trouble with Ensure which is similar to Boost. The book that Ben's rn recommends at the beginning of this thread has a lot of helpful information in it.
Good luck.
 

Tesscorm

Moderator
Staff member
Hi,

I'm sorry about your son! :frown: It certainly isn't easy watching your child suffer through this! But, hopefully, you will find a treatment that works well for him and get him into a lasting remission very soon.

I don't believe we have many, if any, drinkable formulations of the enteral therapy in Canada, hence the NG (or PEG) ingestion. However, from what I've read on this forum, there are drinkable versions available in the U.S. But, I don't believe the Ensure or Boost is the same as the formula used in the enteral therapy (fyi, I think there is a different Ensure formulation that is an enteral therapy in the U.K.).

I certainly think it's worth discussing with your son's GI. So far, my son has responded well. The success rate at inducing remission is comparable to steroids but I have been told that the success rate at maintaining remission is not as high as with other treatments. But, while it is working, we'll stick with it and I'm praying that it continues to work for the long term.

My son did not have a fistula so I'm not sure how effective the EN is at treating fistulas. But, there are many people on this site with more experience than I, so I'm sure you'll have more responses soon. You may want to consider posting your son's story in the My Story subforum - you may have more responses...

Good luck... :smile:
 
Hi Everyone, I spoke with my daughters doctor today and insisted that I want to speak with them about EN. I also ordered the Beat Crohn's book. I will keep you posted about how it goes but it seems everyone here in the US are not in favor of it.
 
Actually Tesscorm, we do have drinkable complete Enteral Nutrition formulas available in Canada. Here's a website that has some: http://www.nutrition.nestle.ca/en/our_products/complete_element_nutrition/vivonex_pediatric (You ned to click on the page on the right to see other products.)

The main problem with drinking them is that most people don't find the formula palatable. This is one of the reasons that an NG or PEG is used.

As to Josh'sMom's question-- some people do just use the OTC Boost or Ensure-- I'm not recommending it for longterm use, and that's why I suggested the medical guidance and the book.
 

Tesscorm

Moderator
Staff member
Thanks Happy, I'll ask my son's dietitian next time I see her - last time we spoke of it, she was hoping that Modulen would be available in Canada by end of 2011 but she didn't mention any other options.

But, along your other comment re flavour... now that my son's used to inserting/removing the NG tube, I'm fairly sure he would end up choosing the tube anyway... he's always been a picky eater and has a very low tolerance when eating/drinking something that he doesn't 'like'. And, to top it off, it wouldn't be a small quantity - his maintenance is 1000 ml per day.

Kimmidwife - yes, please let us know about your apptmt with the Dr. Simply out of curiousity, I'd like to know why this treatment isn't more commonly used in N.A.
 
Thank you all for your advice. I hope to talk to the GI doctor today about a stool study we are having done, and I am going to ask him about the EN. Thanks agains so much!!! :)
 
I have a quick question. When doing the EN can you drink regular fluids still such as Gatorade? My daughter wanted to know.
 
I am on the phone with the doctor now and he is saying it doesn't work. He says as soon as you go back to eating the pain and inflammation come back. Anyone have experience with afterwards? Is there a good chance for remission?
 
Hi kimmidwife,
Typically when a person chooses full enteral nutrition to induce remission, he/she is restricted to the formula and nothing else. However, many people on the forum have been on EN prior to surgery and they are often allowed 'gel-type' foods. Once remission is achieved many people choose to remain on partial formula while eating solid foods to stay in remission and to maintain/regain weight. The research shows that this works for some people.

Your doctor is correct, most/many people relapse after moving from full formula to full solid food. The program that I am following is described on this website: http://www.crohns.org.uk; and in the book: Inflammatory Bowel Disease by Dr. John Hunter. The info is based on a program and research done at Addenbrooks Hospital in the U.K.

The theory is that EN changes the flora in the bowel and induces remission by reducing the 'food' that the inflammatory process feeds on. When a person returns to eating solid food it needs to be done very gradually and in a way that keeps the flora that the inflammation uses under control. ( For this reason it does not work for people with Ulcerative Colitis.) There are two ways to reintroduce foods: the LOFFLEX diet, which is a partial elimination diet with a faster introduction of foods and the full elimination diet, which is a very slow introduction of foods.

I relapsed on the LOFFLEX diet, resumed EN for two weeks to induce remission again, and have, so far, remained well on the full elimination diet for eight weeks. It is not long enough to know yet if I will remain in remission.

The diet portion of retaining remission is not easy and very time consuming. For all of the above reasons most people prefer meds and your doctor says," it doesn't work".
 

Tesscorm

Moderator
Staff member
My son was allow clear juices, jello, freezies and broth during the initial six week 'exclusive' period. Once the six weeks ended, his dietitian gave us a reintroduction diet. During the exclusive period, he ingested 2000 ml per night of formula, while he was on the reintro diet, he gradually reduced the amount of formula to 1000 ml which he will continue for one year (no plan beyond this due to his transfer to an adult GI at a different hospital next year).

His reintro diet was:

1. low fibre foods for 3 - 4 days: white bread, rice, potato, plain muffins, plain cereal. He was allowed a very small amount of toppings (butter, cream cheese, spoonful of tomato sauce with no chunks or seeds, etc.)

2. low fat proteins for 3 - 4 days: chicken, eggs, beef, fish, etc.

3. soft fruit and veggies for 3 - 4 days: applesauce, no skins (apple peels, potato, etc.), no membranes (the 'skin' around orange segments)

4. dairy and/or alternatives for 3 - 4 days

He was told to always avoid seeds, nuts, popcorn, corn (although he has eaten corn chips without problem), fruit/veggie skins.

After that, he was allowed to reintroduce all foods gradually. His reintro diet started July 8 and, now, he is eating pretty much everything. I have 'limited' milk (have periodically alternated cow milk with soy milk) and junk food (altho not completely eliminated it). The only meal that seemed to bother him was a greasy breakfast sandwich (with egg, cheese and sausage) with a large chocolate milk (surprise, surprise! LOL) BUT that was a day that we were also travelling, catching connecting flights and eating on the run so... may not have been all due to that one meal. (And, even then, his symptoms were minor... just felt 'off' and had a very small amount of mucus once but was fine by the next day.)

I think I mentioned earlier that his doctor did say that EN does not maintain remission as well as other medications but, so far, my son has shown minimal symptoms. His BMs are normal, has gained 30 lbs. and energy levels are back to normal. I am a bit concerned that this won't last... as I mentioned before, he periodically has a bit of mucus and, at this last appointment, felt some pain when the doctor pressed on a specific spot (LRQ) so I'm worried that there is still some inflammation. But, to follow up, he has an ultrasound booked next week and an MRE in 6weeks... so we'll see.

His GI (and clinic) have been involved in research re EN therapy so, in our case, it was the first treatment they suggested (steroids were presented as the 'alternative'). At the time, with everything so new, I even felt like they were pushing their own agenda with the EN therapy! LOL But so glad we went with it!

I'm also going to purchase this book, perhaps I can do more in his diet to support the maintenance formula therapy. Was there much info in the book regarding long term maintenance with EN?
 
ben's rn, I hope that you don't mind that we have hijacked your thread. :)
I do think that it is great to have a place to discuss EN as a treatment, so thanks for starting the thread.

Tesscorm, Both books discussed in this thread are good resources. The one that ben's rn mentions sites a lot of research and describes the different approaches to starting to eat again after EN. However, it doesn't give specifics about how to go about it. Dr. Hunter's book does have specifics regarding the two methods that I described above.

Dr. Hunter's two methods assumes that the person is gradually stopping EN as he/she gradually starts eating again. He does mention that eating in a restricted manner is necessary for a year or more to maintain remission. Both methods restrict fats and fatty food and high fibre foods (this includes high fibre fruits and vegetables). They also restrict dairy products. You start with soy milk and later test cow's milk. Also the main grain at first is rice; other grains are very slowly added and tested for at least a week.

He suggests that people have a small supply of EN in case they begin to flare up. The idea is that you take the EN for a few days until you no longer have symptoms and pick up where you left off. Some people may find that there are certain foods that they cannot tolerate, so they can no longer eat those foods.

Particularly with children, I would clear any changes in diet with a dietician as restricting fats, the amount of fruits/veggies and dairy can cause other problems due to insufficient vitamins, calcium, Vitamin D and essential fats.

I hope all goes well with your son's treatment, Tesscorm.

I am curious about where they are studying EN in Canada. I live in Alberta and find that there is little support for it in the adult population unless you are having surgery.
 
Ashley1, Thanks so much for all this information. I actually saved the cord blood cells from one of my children. I wonder if these can be used for transpalnts. Caitlyn wants to try to drink the formula. She is afraid of the NG tube. I am willing to give it a go and see how it goes and worst comes to worst to then try the tube. Thanks everyone for all your support here. I am feeling very down about everything and your support really means a lot.
 

Tesscorm

Moderator
Staff member
Kimmidwife - if you search, you'll find two threads by members who have had stem cell transplants, one just completed his transplant and has a link to his blog describing his experience. Very inspirational!! :dance: As far as the NG tube, my son really has an easy time with the insertion/removal of the tube... but he is older than your daughter and, maybe, has a better acceptance of the necessity??? But he was comfortable inserting it within a couple of days and within a couple weeks, was inserting it in seconds, using only one hand... really has no struggles with it. Although, I'm sure, the younger the child, the more difficult the 'tube' challenge. As was mentioned below, the tube does not have to be removed every day, can stay in for up to a month or more. It is frustrating/upsetting when it sometimes seems we can do so little to alleviate their problems! You know you have everyone's support here! Hopefully, the EN therapy is a possibility for your daughter and will bring her some relief quickly! :ghug:

Happy - My son is being treated at Hospital for Sick Children in Toronto. I have a research report written by the GI (head of the dept) who initially diagnosed him, but I am unable to attach it due to it's size. Not sure if it'll make a difference but I'll try to send it to you through a PM. Our dietitian, who also works through the hospital's IBD clinic did tell me that there is little support for EN for adults. She was unable to provide me with names of any adult GIs that she is aware of that are involved in or support this treatment (so I am concerned about what will happen to his treatment next year!!! But, we'll deal with it then!) I will pick up the book you mentioned, thanks. My son seems to be doing okay with his diet, but I am afraid there may be more going on inside that we are not aware of. His symptoms weren't severe to begin with, so could be easy to miss... (or maybe I'm just worrying for nothing! :ybatty:)

Ashley - thanks also for all the info! :ysmile:

AND, Ben's RN - thanks also for starting this thread! It's great to have others to discuss EN therapy! :thumleft:
 
Hi Everyone. I just finished reading the Beat Crohn's book. It is a very helpful book. I finally got a call back from the nutritionist and hopefully will meet with them early next week to get started. Meantime Caitlyn is to have a colonoscopy and endoscopy on Tuesaday.
 
Ashley1, Thanks for sharing your son's story with us. I hope that he continues to do well.

kimmidwife, I hope that Caitlyn's scopes go well and that the nutritionist is helpful. Perhaps you could ask Tesscorm to share the EN study info with you. If the nutritionist is not very familiar with EN he/she might be more willing to help if they have some recent studies to review. I am glad the book was helpful to you. It sure helped me.

Tesscorm,
Thanks for the info!
 
Funny, when my doc discussed EN with me, he sent me home with a bunch of samples. I purchased a dozen versions of ensure but dd didn't like the taste of any of them. He NOT ONCE mentioned a ng tube. I am not sure if it is something I am willing to put her through at 4...but if her disease persists I am glad to know it is a viable option. Thanks for the useful post.
 

Tesscorm

Moderator
Staff member
Angie, I just replied to your other post...

Good luck again with Izzi's new medication.
 
Dumb question...if they choose not to remove it they have an ng tube tapes to them all day? In our case would it interfere with play/daily activities?? (I am envisioning the ng tubes I see patients with at the hospital...very noticeable
 

Tesscorm

Moderator
Staff member
The NG tube is very thin and, when inserted, comes out the nose and is long enough that it can be pulled back behind your ear (and would just dangle a bit lower than your ear). It is taped to your cheek. In my other post, I mentioned my friend's daughter... she wore her NG tube all summer (6 weeks). The only thing it interfered with was swimming - she went to the amusement park, rode the rides, went to friends' homes, played soccer, went to the park (she actually did go swimming but, is a very cautious, mature 10 year old, so I have no doubt she was careful to not wet it...). Although, to be honest, even if it got wet, I don't think it would matter...

You'll have to be careful that it's not pulled out accidentally while playing (the tape securing the tube is meant to come off skin fairly easily). This wouldn't hurt at all (tube just slides out) but then you would have to deal with a reinsertion. This has happened to my son when he's 'forgotten' he's hooked up to the feed and gets up quickly and walks away :ybatty:.

Sleeping hooked up hasn't been a problem, hasn't been restrictive(and extensions are available). I secured the tube to his t-shirt at night with a small hairclip so that the tube wasn't flopping around. The noise of the pump bothered him at the beginning, so I put the pump in his night table drawer and draped a towel over it (noise only bothered him for the first couple of weeks). And, the first few days, he complained of the sensation of having something in his throat, but this also went away fairly quickly.

Evenings did have to be adjusted somewhat. During his 6-week treatment, the formula ran for approx. 10 hours. He had to begin at 9pm to be done in time for school. He found this a bit annoying as from 9pm onwards he had to drag the pump and stand around with him as he moved from room to room. We did have some flexibility with the speed rate, so he was able to speed up the formula so that the entire amount could be fed to him in 8 hours. We didn't do it every night as 1) I was concerned the faster speed could upset his stomach and 2) the bag only held half the dose, the slower speed worked better for our schedule for the 'refill' time.

The toughest part, by far, was the no eating. I can't even imagine how much willpower it took for him to be around friends at lunch, school's athletic banquet, etc. without being able to eat one bite! My husband and I didn't enjoy one meal during the six weeks (how could we, when we are all 'enjoying' dinner and he's off in another room bcz he can't eat! I was even upset with my husband once for keeping the door open while bbqing because the smell came in!:ymad:). I'm not sure if it will be easier with a younger child as you have more control over her social activities and diet or tougher because she won't have the same understanding??? But, expect this to be the toughest part :(. If this is something your GI thinks could help Izzi, perhaps try to plan to start it right after Halloween to end before Christmas (although there is a period of reintroducing food - she can't eat everything right away).

If you choose to go this route, I hope it works for Izzi. :ghug: It's a great option as there are no side effects and they get all the necessary nutrients. Good luck!
 
Thank you so much for all of the info (and taking the time :))...does he get hungry? My doc had said that she needed 90% of her calories from EN, which I am guessing means she MAY be able to have a bit of something now and then. Just left a message for my doc to see what he says about the ng tube.

ETA The research for Crohns colitis remission using EN isn't promising...only 20% (albeit a small study) achieved remission. Likewise, it isn't proven to have great results in colitis patients. boo. Maybe it's not the right fit for us :(
 
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Tesscorm

Moderator
Staff member
While he was on the 'exclusive' period (formula only) he was allowed clear juice, freezies, jello and broth (just have to be careful about 'sugar' and cavities!). There was psychological/behavioural hunger, i.e. at lunch with friends, and then actual hunger by the evening. I sent him broth to have at lunch and arranged with the school to keep freezies in their freezer. In the evening, he would have broth and I would change it up a bit by heating it up with different spices (basil, rosemary, etc. and then strain it - there's only so much you can do with broth! LOL)

Also, in the evening, if he was going out, a couple of times he would have the formula for an hour or so after school, go out and then finish up overnight (just to take the edge off the hunger).

But, some members here have said they weren't allowed 'anything' - no broth, jello, etc.

As far as success, I was told my son did not have colitis (which kind of confuses me as he had inflammation in his duodenum, small intestine and colon - I thought if it involved the colon it is colitis???). But, what I know re success is that the success is comparable to steroids in achieving remission but that maintaining remission using the maintenance therapy (my son currently ingests 1/2 the dose, 5 nights per week) is not as successful as with other medications. I don't know if this is different for Crohns Colitis.
 
Hi All, Caitlyn finished her colonoscopy and endoscopy. The doctor told us things did not look bad by the naked eye. Of course we have to wait for the biopsies. I met with the nutritionist while she was having the procedure and got some samples of the formula she said was the best. it is called Peptide. I now have to wait for everything to be set up with the insurance and we will be set to start. we are also going to start weaning her off the steroids. He cut her dose in half as of today from 40mg to 20mg for 2 weeks and then we will go down by 5 every 2 weeks until we get to zero.
 
DD's involves only the colon, which WOULD be UC, except she has a granuloma, which makes it crohns. Because she only has large intestine involvement it is crohns colitis. (i think lol)
 

DustyKat

Super Moderator
You are spot on Angie, Crohn's only in the large bowel is Crohn's Colitis.

Unfortunately all the literature I have read also seems to indicate that EN isn't very successful when it comes inducing remission in IBD affecting the large bowel.

Dusty. xxx
 
DustyKat you are correct that EN does not seem to work as well for Crohn's Colitis according to whagt I have been reading.
 

DustyKat

Super Moderator
Wow, thanks for sharing that Ashley. :)

Even with the supposed reduced odds I think EN is always worth a try. It's what we do with other treatments...give it a go hoping more than anything it is the thing that will do the trick. The advantage with EN is it doesn't have the side effects meds do so if it doesn't work you really are no worse off.

Dusty. :)
 
I know. Stupid that I am willing to risk potentially harmful side effects (steroids are bad enough, and Remicade scares me even more) but don't want to torture my daughter with a ng tube. Duh. She got used to the IV, didn't she?!
Listen, if anyone finds a manual on parenting IBD kids, I'll pay ya' a million dollars for it! ;)
 

DustyKat

Super Moderator
Ah hell Angie, there's no rhyme or reason with IBD is there? One day something scares the hell out of us and the next we welcome it with open arms! :yfaint:

Hmph, looks like I won't be earning a million dollars...bugger...:lol:

Dusty. :)
 

Tesscorm

Moderator
Staff member
Sorry, just a small, temporary 'detour' in this thread...:)

re the Crohn's colitis... can someone explain, as I said my son had inflammation in his duodenum (sp??), small intestines, TI and colon, however, the head GI of the hospital's IBD clinic, who performed his colonoscopy and endoscopy specifically said ' he has Crohn's but not Colitis'. If I understand Dusty's post correct, does Crohn's colitis mean it ONLY affects the colon? but, if his colon was also inflammed, wouldn't this mean he has Crohn's Colitis PLUS whatever other type of Crohns? (And, maybe my basic understanding is incorrect, but is the colon and large bowel the same thing?) :confused2:

thanks


Kimmidwife - glad to hear Caitlyn is doing better! Good luck with the EN.

Angie - Good luck, as well, with the EN. I hope it's an option that works for Izzi!
 
Crohns disease is the term for infammation from mouth to rectum. If it is solely in the large bowel, it is Crohn's colitis (I am guessing it is termed differently as it may be that it is treated a bit differently (we have tried enemas, which I am sure won't work for Crohns in other areas of the GI tract).

Ileocolitis: Ileocolitis is the most common type of Crohn's disease. It affects the small intestine, known as the ileum, and the colon
Ileitis: This type of Crohn's disease affects the ileum.
Gastroduodenal Crohn's disease: This form of Crohn's disease involves the stomach and duodenum
Jejunoileitis: This form of the disease affects the jejunum
Crohn's (granulomatous) colitis: This form of Crohn's disease involves only the colon

Thanks for asking that question...I learned something new today! :)

I would guess that in your case it is ileocolitis, right?!
 

Tesscorm

Moderator
Staff member
Thanks! :rosette2: I guess my son has Ileocolitis (inflammation in the duodonum was slight). I did ask at one of his follow up appointments, received some sort of explanation but, for some reason, still came away not knowing??? :yrolleyes: Thank god for this forum! I've learned so much here, I'd be lost without it! Can't imagine JUST counting on his GI for info! :lol:
 
Hi Caitlyn tried one of the shakes this morning. (We are still waiting for insurance approval to get the shakes but got a few samples from the nutritionist. The one she tried is the Pediasure Peptide. She said it did not taste too bad. However she is really not looking forward to doing this even though everything she eats hurts her stomach. She is realy down and sad.
 

DustyKat

Super Moderator
Crohns disease is the term for infammation from mouth to rectum. If it is solely in the large bowel, it is Crohn's colitis (I am guessing it is termed differently as it may be that it is treated a bit differently (we have tried enemas, which I am sure won't work for Crohns in other areas of the GI tract).
Right again Angie! Because it only affects the large bowel the name differentiates it from Ulcerative Colitis and does also mean that there is a cross over of medication used to treat both conditions.

@Tesscorm - Colon and Large Bowel are the same thing and your son would have ileocolitis. The duodenum is the start of the small bowel (ileum), the terminal ileum is the end of the small bowel and then he has involvement of the large bowel (colon). End it of with the medical suffix for inflammation, itis and you end up with ileocolitis.

Dusty. xxx
 

David

Co-Founder
Staff member
Would anyone who has taken part in this thread object to me copying this thread to our new enteral nutrition forum? This thread would remain here (which I think is important since this subforum is so specialized) but people who maybe don't have kids and visit the new EN forum would benefit from the info as well since an active copy would exist there. If anyone objects, that's quite ok and why I'm checking. :)

Sorry for the interruption!
 
I don't object David.
Ashley1, We are going to be using the 1.5. Thanks for letting me know. Still awaiting approval from the insurance company. I spoke with them it is in the works and hopefully will be in place by next week. Meanwhile she is drinking one shake per day for breakfast to get used to it.
 
No problem, David.
Still haven't heard back from my doc yet after leaving a message re: EN via NG. Shocking, I know. lol. Will be harassing him next week. :)
 
Hi All, Caitlyn started the EN fully on Monday. She is having a rough time. Last week we let her have dinner to break her in slowly. She wants to know if she can have pudding? Our doctor really knows nothing about EN. We are following what Tesscorm said in her post about using clear liquids broth and formula. She says she does feel a little better. No stomach pain yesterday or today.
 
kimmidwife, I had only the EN and water, but others on this forum have had popsicles, jello and clear broth.
 

Tesscorm

Moderator
Staff member
Hi Kimmidwife,

The 'no eating' is tough, tough, tough! I really admire anyone who's been successful because I'm not sure that I could get through it! :frown:

My son's dietitian allowed him:

broth (any type/flavour, homemade or packaged)

clear juice - however, she warned that we stay away from juices containing any fibre, pulp, etc. She said that, really, the ideal drink during the enteral diet was the type that, as a parent, you would normally never give! :eek2: Mainly sugar and water!! I bought the 'no name' apple juice or 'beverage' (don't even think they called it juice! LOL) as it seemed to contain the least amount of fruit in the ingredients.

other drinks - Gatorade, koolaid, Tang

Freezies, popsicles, jello

Hard 'clear' candies (like Lifesavers but nothing with chocolate or caramel) but only a few per day

Gummy candies

But, be careful with all the sugar! You don't want to solve one problem and create another! :ybatty:

The only ways to add 'variety' that I could think of was to heat up the broth with different spices (rosemary, basil) and then strain it, sometimes I gave it to him in a mug rather than a bowl (sometimes it's all about presentation! :) ), I would combine broths (chicken with beef broth was his 'favourite'), I bought unflavoured gelatin and made some with juice (my son doesn't really like Jello, thought he might like it if it was flavoured with juice... not a big hit...), also tried freezing the Jello but not much different than just having a freezie.

I couldn't think of any other way to add variety. Even tried adding little squares of unflavoured gelatin to the broth, hoping it would hold its shape and sort of feel like pasta but, it melted (as I thought it would, but had to try! :yrolleyes: )


It wasn't easy! My son was absolutely sick of eating/drinking 'sweet' things. For the most part, he stuck with just broth, freezies and apple beverage.


I sent broth with him to school for lunch and supplied the school with freezies for him.

I think, at lunch, he had more behavioural hunger, sitting with friends, etc. He seemed to feel more real hunger by dinner and into the evening. A couple of times, if he was going out later, he did take in 1-2 hours of formula, go out and then finish off the formula overnight. He said it took the edge off 'a little'. He also felt more hunger towards the end of the six week period. Also, weeks 3 and 4 were tough - the dietitian warned him that he would feel more cravings at this point, and he really did. But, seemed to lessen again after a week or so.


Wish I could offer some suggestions that would really make it easier for her. But sending Caitlyn lots of good wishes! :rosette2:
 

Tesscorm

Moderator
Staff member
LOL... still feel like I know almost absolutely nothing else about Crohns but, have certainly learned about EN!

The good (I finally have a way of getting all those vitamins in him! :ybiggrin:), the bad (do NOT forget to put the lid on the blender when making formula! :ybatty:) and the ugly (checking stomach fluid for placement AFTER he'd finished a red freezie! :eek:)... all in a day's work for a Crohn's mom! :heart:
 
I also wonder why more people don't choose this treatment. I was on it in for the month of June and although it's hard I have been in steady remission ever since. Right now I have 3 shakes a day along with food and it's working great! I'm the only patient my doc has on this treatment (it's rarly used in the us) and it's surprising because it can be as effective as an immuosuppresent without the side effects. Maybe the not eating thing scares people, but the shakes were filling and I was allowed Popsicles and chicken broth so after I got over the lack of variety I was fine. It's great to hear about more success stories, maybe in a few years this will be a popular treatment.
 
Hi All,
Caitlyn had a rough day today. She was very sad and fed up with everything. She said she can't handle crohn's anymore and is sick of all the medications and doing this diet. After a long discussion we came to a compromise. I am going to let her have some very soft bland foods along with the shakes. Foods such as mashed potatoes. I am hoping the diet will still work along with this. I will keep you all posted.
 

Tesscorm

Moderator
Staff member
Oh, I'm so sorry that Caitlyn is having such a tough time. Poor thing, I can't imagine how hard this this. To be honest, I'm almost certain I wouldn't last on this diet! :(

I suppose if she's going to eat a bit, the first stage of the reintro diet given to my son is supposed to be the easiest to digest. For the first few days, he was allowed 'white' food - i.e. white bread, soft/mashed potato, rice, rice krispies (no milk), plain muffins, pasta. He was allowed just a small, small bit of toppings (butter, nutella, low fat cream cheese, etc.). Not very nutritious but, I suppose, not necessary when you're also taking in the formula.

To add some 'zing' to the bland diet, I added the rice/potato/pasta to broth, warmed up tortilla bread and let him 'dip' it in strained/pureed salsa, melted some cream cheese and mixed it with pasta...

Good luck!:ghug:
 

DustyKat

Super Moderator
@Tess...thanks for being here hun. Your experience and compassion is very much appreciated.



Dusty. xxx
 
Tesscorm,
What about corn is that considered gentle? My husband could not find rice pasta but found corn pasta. SHe did well today at school. She still only drank 3shakes. She just told me she had some clear broth as well. She just drank a 4th shake after much coaxing and bribing with new ice pops.
 

Tesscorm

Moderator
Staff member
Doing this on a blackbery and alredy lost reply twice! Ughh. Not very techie! We were told no corn ever. Eggs, proteins were reinto 2nd, any type aS long as it was low fat. Sorry can't give more now... Not doing too well on bb. :( good luck
 
Hoping it works for her. Our doc told us 90% of her calories should be from the shakes...not sure how many calories Caitlyn is on right now, but hoping a bit of food makes it easier on her. (((HUGS))) mama, hang in there!!

When I made a comment after a rough day to Izzi about how some days her Crohn's diagnosis must feel like the worst thing in the world, she interrupted me to say "no it's not, mom. I could have a disease where I had spots all over and had to stay in bed all of the time. I would hate to be in bed all day" <3 (I'm thinking the "spots" refer to my psoriasis, which doesn't keep me bedridden, but who knows where they get this stuff lol)

Hoping Caitlyn can find a tiny speck of silver lining in her clouds soon, although I realize that at her age it must be so much harder :(

Thinking of you both and wishing you luck!
 
We had a real bad night last night. Caitlyn went totally off the diet. Then she felt guilty and said she would try it again and then today again she went off and ate things she should not (sigh!) I don't know what to do. I know how hard it is. But after just 4 days on the diet she was already feeling a little better. I am going to encourage her to start again tomorrow.
 
Here's my question...why don't more kids in the US and Canada choose this option? If it is due to lack of education and the unknown, or just scared to try....I am ready willing and able to talk to you, help out, show you how, etc.
At Ben's appt. in May this year, he has grown 4 inches in the past year and a half, and has gained 15 pounds!! Still off meds, missed hardly any school. He tube feeds for about 8 hours over night and can eat what he wants during the day....

What do other moms think about this treatment? Would love to hear your thoughts.....

Beth
I'm not a mom but I was in the hospital where I was only getting glucose, iron and a neck IV with minimum nutrition and no real food at all.

The thing is.........this is not a long term solution, neither is enteral nutrition. This does not actually fix anything except for local pain, this doesn't stop the inflammation, it doesn't stop the bacterial infection, it only locally means you might have less pain. But once those people go off EN, it just comes back, because the inflammation wasn't stopped, the potential infection wasn't stopped and the gut flora is likely completely messed up.

I, and I'm not the only one, just don't understand the idea of how Enteral Nutrition would work. It relieves pain, it gives the patient nutrients back, but it does not actually combat the disease in the short or long term.

I don't know the book, but it says "go into remission on Enteran Nutrition". Are you actually in remission or are you just finding a way to bypass the pain.
 
The GIs at our hospital explained that it is often the first treatment given to children in Europe
I live in Europe and this isn't true. Out of the three hospitals I visited only one uses this and they do it very very rarely when the patient is severely underweight, and the maximum time they use it is about 3 weeks, because there is a serious shortage of room in most European hospitals. (it also happens to be the hospital that was the most behind, the other 2 are university hospitals)

It's also never used as a treatment for the disease, it's used as a treatment for people who are extremely underweight, which is a complication, it's never used as a substitute for medication.

Many of these formulas are made by Nestle (Tolerex, Modulen, Peptamin, Vivonex) and Nestle is based in Switzerland. Perhaps there may be more contact/collaboration between Nestle and the local medical communities hence making European GIs more knowledgeable and comfortable with this treatment and providing doctors with easier access to formulas and information.
Nestle isn't that popular in hospitals, at least not here, hospitals tend to have more custom methods, they will use combinations of glucose, iron, food supplements from third party or Baxter. Nestle is more used once you're out of the hospital and for some reason still need Enteral Nutrition.

Maybe the formula is covered in Europe??? Or is less expensive as it's local???
It's not here. Because governments work together with insurance companies, they actually want you out of the hospital as fast as possible. The stay in hospitals is actually as short as humanly possible. There have actually been complaints about patients who said that they were kicked out of the hospital too soon. Each day longer in the hospital means the insurance and the state has to pay more, so they want you out asap.

Compounded with the fact that many hospitals lack room, the nurses have to work really hard, often they complain about it. I also often had to stand out in the hallway with my IV, because there was no room left to lay down or sit anywhere, even though it's a damn good hospital. Because nurses often have so many people to deal with, everyone is assigned a partner, if something happens to them we ring the alarm bell or yell at the nurses.
 
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Tesscorm

Moderator
Staff member
Hi Kiny

I'm a bit confused by some of your points...

- u say EN is never/rarely used as treatment for Crohns. There are many, many members here that have been treated with EN. Not all have successfully reached remission, however, I don't know of any treatment that can bring about permanent remission in ALL patients.

- u say that EN does not eliminate the inflammation but, rather, masks the pain. I don't believe this is the case with my son. He began 6 weeks of exclusive EN in May, ended in July (he has continued EN at 1/2 dose, 5 nites/wk). His fevers, D, night sweats, canker sores, weight loss, loss of appetite and fatigue disappeared almost immediately after starting EN. He barely had any pain bfr or since, so I can't really say if it is or isn't masking pain. Since July he has been eating pretty much ALL foods (only limitations hv been no nuts, corn kernals, popcorn, seeds, 'limited' fruits/veggies). IMO and to my constant worry, he does still hv too much junk - mcdonalds, pizza, etc. But it doesn't seem to affect him. So, if EN is only aiding his weight gain (which it did)and is only masking the pain, whr r

the rest of his symptoms? After over three mos of regular eating?

Now, is EN ideal treatment? No.

- our GI warned that ENs success rate is not as high as other medications at 'maintaining' remission.
- my son wud most definitely prefer to not need to insert an NG tube every night and hook up formula and sleep 'tied' to a pump
- he has had random symptoms, that last a few days and then disappear (ie in Aug, after a very greasy meAl and all day travel, felt 'off' and had some mucus in his BM, currenty is a bit constipated???)
- he is worried abt the Future - how will sharing a room work at univ with the pumps noise, spontaneous nights away, etc.

However,

-is he suffering from side effects from steroids? No
- is he at risk of side effects from immunosuppressants? No. From remicade, humira, etc? No. The only medication he is on is nexium.
- does he need to give himself a needle? Go get infusions? No


So, I most definitely believe EN is well worth trying. For as long as it is working, we will keep doing it. Thr is no harm done in trying and staying with it long term. No treatment is 'convenient' or 100pct successful. I hope it never happens but I expect that EN will not work for him forever, I worry that his current constipation cud be the beginning of ineffectiveness but... Will never hv regretted trying EN for as long as possible.

Sorry if I've rambled a bit or if its a bit jumpy - am doing this on my blackberrry and the screen is so small... Lol

I'm not an expert by any stretch - these are just my opinions (and, I suppose, 'hopes' that EN will continue to work for Stephen)
 

David

Co-Founder
Staff member
Kiny, your information is incorrect. I'm not going to go point by point, but this treatment has shown to have about the same REMISSION rates as prednisone. It's not just about pain relief, it's about bringing on remission.
 
Kiny, your information is incorrect. I'm not going to go point by point, but this treatment has shown to have about the same REMISSION rates as prednisone. It's not just about pain relief, it's about bringing on remission.
It simply doesn't make sense, that's many doctors don't have faith in it. There is no explanation why enteral nutrition would stop inflammation, intestinal trauma, fight off infections. Intestinal trauma goes deep, it goes up to the lymph nodes and causes havoc all the way through your intestin.

If there is proof, I would love to be proven wrong. But annectdotal evidence of people getting better does not prove it was because of EN. There are no papers I know of that say EN is a substitute for proper medical care. It's a good substitute for people who are severely underweight, but it likely has no benefit on the disease itself.

What I see is that people stay on EN, and do not stay in remission, at one point they come back, and then it's a hell of a lot worse than if they decided to go on proper medication the first time.
 
-is he suffering from side effects from steroids? No
steroid side effects are actually quite low, since the doses have been lowered a number of times, the clinic I go to was responsible for achieving this, they're a fraction of what they used to give to people

His fevers, D, night sweats, canker sores, weight loss, loss of appetite and fatigue disappeared almost immediately after starting EN.
That's what happens when someone starts eating again too though.
 
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Kiny,
Have your read the book Beat Crohn's with EN? It explains a lot about EN and how it works. If blood tests and colonoscopy's as well as other tests show reduced inflammation and healing well then that certainly proves to me that it does work. Also steroids have tons of side effects. I don't know how you say they don't. Yes, they help with many diseases but they cause all kinds of issues even in lower doses. All these other drugs also have side effects. If I can get my daughter stable using something very safe like EN I certainly prefer that.
 
Also steroids have tons of side effects. I don't know how you say they don't.
Well, I never said they didn't. I said they are quite low, because the doses they give people are very low now. Entocort side effects are extremely rare for people who go on them (1-3 weeks standard).

The name "steroids" got a really bad connotation because of the sports industry and the name alone tends to scare people, proper use of them in clinics usually doesn't cause any issues.

The book I haven't read, so I can't comment on it. I won't say he's wrong or right, the title is misleading that's all I can say.
 
If blood tests and colonoscopy's as well as other tests show reduced inflammation and healing well then that certainly proves to me that it does work.
I'm happy for you it does.

But let me show you why that isn't proof.

"I fitness every day, I have no issues, therefore my crohns was healed by fitness."

You see the issue with that line of thinking, that's why studies use control groups.



I'm not saying go off EN, if it helps your son, great and let's hope he stays well. But the OP asked why doctors aren't using EN everywhere, because there are no studies that show remission linked to EN.

Maybe someone can show me a study that used a control group, because I'd love to read the reasoning, there is a lot of things we don't know yet, I just don't see how one lead to the other.
 

DustyKat

Super Moderator
Hey Kiny,

When I have searched for articles, scholarly included, there are sufficient quantities that attest to the fact that an EN diet can indeed be successful at inducing remission. Granted, corticosteroids do have a higher success rate but EN rates are in figures not to be sneezed at. The exact process at how EN is able to achieve this does appear to remain largely unknown but is this a reason to dismiss it as a viable alternative in appropriate cases? I don't think so.

I personally believe that if you do gain remission via EN then to maintain remission you need to continue treatment with a modified diet for some time and the addition of maintenance medication just the same as you do with steroid induced remission.

I don't think anyone is suggesting that EN is a substitute for proper medical care but rather it is a consideration in a well planned and supervised treatment program.

Enteral nutrition is commonly used to treat children with newly diagnosed with Crohn's disease in the United Kingdom, but this practice is relatively rare across the Atlantic Ocean (1). The administration of formulated food to treat acute exacerbations of Crohn's disease has a long history of sporadic interest but is predominantly neglected in North America in comparison with drug treatment. In an era when patients and parents increasingly seek alternative therapies, one must ask why a nutritional intervention that has repeatedly achieved at least moderate efficacy is not more often pursued.

The usefulness of enteral nutrition as primary therapy of active intestinal inflammation was discovered fortuitously, when adult patients given an elemental diet before surgery experienced improvement, not only in nutritional status as intended, but also, unexpectedly, in the inflammatory activity of Crohn's disease (2). Efficacy was suggested further by the results of early small, randomized, controlled trials versus corticosteroid therapy conducted in both adults (3) and children (4). Although the North American Collaborative Crohn's Disease Study (NCCDS) Group evaluated only drug therapy, their counterpart, the European Cooperative Crohn's Disease Study (ECCDS) Group, appropriately undertook to examine exclusive enteral nutrition in the setting of a large, multicenter, randomized controlled trial (5,6). Indeed, when the ECCDS III trial encountered overwhelming (32%) intolerance to orally administered semielemental formulated food (5), the European adult gastroenterologists persisted with the ECCDS IV trial involving nasogastric infusion of the liquid diet (6). Although tolerance was improved in this study of 107 adults with active, moderately severe Crohn's disease, the difference between clinical remission rates achieved with enteral nutrition (53%) compared with corticosteroids and sulfasalazine (85%) was clinically and statistically significant (6). This well-designed and well-conducted study provides grade I evidence of a treatment benefit to conventional drug therapy versus semielemental liquid diet therapy in adults with active Crohn's disease of the small and/or large intestine (7).

Proponents of the necessity for specifically elemental formulae to treat intestinal inflammation have argued that the oligopeptide-containing formula used in the ECCDS is inferior to drug therapy because of its composition. Alternatively, the failure of small trials to detect a difference in response rates with elemental formulas versus corticosteroids may be due merely to inadequate sample size (i.e., to type II errors) and not to superior formula composition. The seemingly divergent outcomes between small controlled trials in adult and pediatric patients, each involving roughly 20 patients, and the much larger multicenter ECCDS IV trial justified the use of meta-analytic techniques to examine apparently conflicting data (8-10). The outcomes in randomized trials of enteral nutrition versus corticosteroids, comprising 316 adult and 97 pediatric patients, were demonstrated in these meta-analytic studies to be, in fact, homogeneous; the 95% confidence intervals for the differences in observed remission rates in individual trials overlapped (8-10). In all but one trial of 21 adult patients (3) and another unpublished study of 19 children (11), more patients achieved clinical remission with corticosteroids than with enteral nutrition. Combination of randomized controlled data from adult and pediatric studies suggests that the likelihood of inducing clinical remission of active Crohn's disease is greater with prednisone than with exclusive enteral nutrition (8-10).

Heuschkel et al. have combined in meta-analysis the data accrued in controlled trials conducted exclusively in children and adolescents. They conclude that nutritional treatment and conventional corticosteroids are equally efficacious in pediatric patients, even if not in adults. Although it is useful to summarize the pediatric trials conducted, the methods used to arrive at this conclusion are flawed. Only five randomized trials comprising 147 children have been conducted. This number falls short of the 182 patients calculated by Heuschkel et al. as necessary to detect a 20% difference in treatment effects. Otherwise stated, the results of the meta-analysis of truly randomized controlled pediatric trials are inadequate to exclude a 20% difference.

Inclusion of two nonrandomized trials, although a means of reaching the desired sample size, is inappropriate. Data from well-conducted randomized controlled trials are considered the highest quality of evidence, because in comparison with other study designs, they attempt to minimize bias, which threatens the validity of results (7,12). This is well illustrated by the fact that results in open trials are consistently more favorable than outcomes in subsequent randomized controlled studies. Those with enthusiasm have no controls, and those with controls have no enthusiasm. Conclusions of any meta-analysis are only as good as the data included (13). The results of a single, large, high-quality randomized controlled trial are more convincing than the results of a meta-analysis of multiple small trials, if flaws in design compromise individual trial validity (13). The 100% remission rates achieved in small pediatric nutritional trials are, at best, surprising! Perhaps selection bias or bias in outcome assessment rather than purely therapeutic efficacy of enteral nutrition explain these exceptional clinical remission rates. The Lloyd-Still index used to assess outcome in three of seven pediatric trials has never been validated, nor has a cut score for remission been defined. Even randomized trials may be subject to selection bias, if the method of randomization does not prevent foreknowledge of treatment assignment. Allocation concealment (by opaque envelopes or centralized randomization in multicenter studies) reduces selection bias in results and is particularly important in trial settings, such as those comparing enteral nutrition with corticosteroids, in which physicians and patients cannot be blinded to the type of therapy received (14).

The one multicenter pediatric study involved 78 children and adolescents but has unfortunately hitherto been published only in abstract form (15). The observed difference between the response rates with corticosteroids and with enteral nutrition was greater in this Canadian study than the differences observed in the much smaller, single-center trials. Moreover, in the subset of 21 pediatric patients with disease in relapse, the response rates to enteral nutrition and to corticosteroids were 50% and 85%, respectively, almost identical with those reported in adults in the ECCDS IV trial (6,15,16). This suggests that variations in the nature and severity of Crohn's disease, rather than age per se, affect response rates to enteral nutrition. Such variations are important to note when making treatment selections. Data from the multicenter study, which stratified children before randomization into newly diagnosed versus in relapse, support the comments of Heuschkel et al. that recent-onset, previously untreated inflammation, may be particularly responsive to nutritional therapy. Children with isolated Crohn's colitis were excluded from the multicenter pediatric study and from at least two of the small pediatric trials based on anecdotal experience that, in comparison with patients with small intestinal disease, they respond less well to liquid diet therapy (17). It must be remembered, however, that Crohn's colitis was relatively refractory to corticosteroids in the NCCDS and ECCDS trials of drug therapy, as well (18).

As argued in earlier meta-analyses, enteral nutrition remains an important therapeutic modality, even if corticosteroids induce clinical remission more often (8-10). There may be subgroups of patients, such as children or adults with newly diagnosed terminal ileal or diffuse small intestinal inflammation, in which liquid diet therapy is as likely to achieve clinical remission. Considering the best published evidence from the high-quality adult ECCDS IV trial, the overall 53% remission rate with exclusive enteral nutrition is still in the 50% to 60% range reported in similar multicenter studies for controlled ileal release budesonide in active Crohn's disease of the ileum and/or right colon (19,20). Controlled ileal-release budesonide is an example of a therapy of modest efficacy, which has the appeal of lower risk of adverse systemic effects. Surely enteral nutrition has an even greater advantage, particularly in children, when risks and benefits are considered.

Direct and indirect evidence of a diminution in mucosal inflammation with enteral nutrition has been provided, although the mechanism of action remains conjectural (21-23). The failure of corticosteroids to induce mucosal healing, the unwanted cosmetic side effects with short-term use, and the more serious adverse effects of longer term use are all too well known. Why then has enteral nutrition been largely neglected as a first-line treatment option for active Crohn's disease in North America? The answer presumably relates to the perceived invasiveness and inconveniences of feeding regimens, which usually entail administration through a nasogastric tube and exclusion of regular food. The initial teaching and encouragement required from the medical and nursing team make it a labor-intensive option. However, despite initial reluctance, some young patients, particularly those whose growth is stunted and/or who are underweight, ultimately prefer to treat exacerbations with enteral nutrition rather than with corticosteroids (17). Moreover, although existing randomized controlled trial data are inconclusive about whether formula composition influences efficacy (8-10), improvements in the palatability of oligopeptide-containing formulae and the use of polymeric diets appear to make oral consumption a more realistic option than previously.

The statement of Heuschkel et al., that enteral nutrition should be recommended as first-line therapy in all children with active Crohn's disease would be a hard sell in North America. Nevertheless, we would do well to observe the experience of our colleagues across the Atlantic, where liquid diets seem to be feasible, effective, and accepted by families. We should encourage consideration of enteral nutrition as an alternative to corticosteroids and make recommendations concerning optimal therapy depending on individual disease and patient characteristics.
http://journals.lww.com/jpgn/Fulltext/2000/07000/Enteral_Nutrition__The_Neglected_Primary_Therapy.3.aspx

I don't think it ever hurts to think outside the square when it comes to this disease. According to pathology, colonoscopy and surgery, my son has no convincing evidence of Crohn's disease. If I looked purely to that evidence then my son doesn't have Crohn's. The doctors told me it looks like Crohn's, it acts likes Crohn's, he has Crohn's, so really, I am taking their word for it. Mind you I believe 100% that he has CD even without there confirmation. Is it really any different to EN induced remission? They look well, they have no have symptoms and their blood and test results support they are in remission...must be remission.

Dusty. :)
 
I don't think it ever hurts to think outside the square when it comes to this disease. According to pathology, colonoscopy and surgery, my son has no convincing evidence of Crohn's disease. If I looked purely to that evidence then my son doesn't have Crohn's. The doctors told me it looks like Crohn's, it acts likes Crohn's, he has Crohn's, so really, I am taking their word for it. Mind you I believe 100% that he has CD even without there confirmation. Is it really any different to EN induced remission? They look well, they have no have symptoms and their blood and test results support they are in remission...must be remission.

Dusty. :)
I haven't read all yet but I will thanks.

I'm worried that people feel that no pain and no signs on colonoscopies equals remission. Well I'll admit that the definition is different for everyone.

436126 is interesting because it shows that crohn's could be inside-out instead of out-side in, which means a colonoscopy or endoscopy would not show the truth. You can see people who are fine during a colonoscopy but not when they are seen through MRI which will show lymph node in contrast and deep inflammation.

Everything seems to happen in much deeper layers than we knew, and MRI are showing this. Because eating food by EN or orally should only have a topical effect I don't see why it would help, but I'm not saying there isn't a chance that it does.

What I'm worried about is that people go on EN, they do not take 'advised' meds, and see on colonoscopies that there are no signs, even though their whole intestin could be under attack.

I try to think outside the box as much as possible, that's why I question EN.
 

DustyKat

Super Moderator
I may well be wrong but I think most of the people that go on EN here do so under medical advice and supervision. Of course there will be those that don't and do see it as a treatment in itself and by itself.

I think the trick with EN is as the article concludes with... We should encourage consideration of enteral nutrition as an alternative to corticosteroids and make recommendations concerning optimal therapy depending on individual disease and patient characteristics....My son was started on EN as a treatment whist in hospital and while also taking IV steroids and oral Azathioprine. It was withdrawn as a treatment when it was realised he had a microperforation and abscess, so his disease was full thickness and EN wasn't going to assist in healing it. But perhaps for those that have a milder presentation and/or non fistulising ileal disease EN could be a viable alternative.

Dusty. :)
 
If they're low on nurtition it might help, it would justify the individual approach, but I see this as treating a side-effect. It goes against the top-down approach which might mean a much more serious case down the road for some. I have to disagree to agree, although I admit it's tempting to think otherwise, because parents are probably a lot happier to know their kids aren't on drugs (although like I said, some parents go off their rocker just because they hear the word steroids, "not my child"). Well gonna go nap a bit, thanks for the chat.
 
http://journals.lww.com/jpgn/Abstract/2000/07000/Enteral_Nutrition_and_Corticosteroids_in_the.5.aspx

Conclusions: There is no difference in efficacy between enteral nutrition and corticosteroid therapy in the treatment of acute Crohn's disease in children. Improved growth and development, without the side effects of steroid therapy, make enteral nutrition a better choice for first-line therapy in children with active Crohn's disease.

I would have thought all this was common knowledge by now as there have been so many studies like this one.
Good luck to all the Mums trying to manage their children's long term health!
 
http://journals.lww.com/jpgn/Abstract/2000/07000/Enteral_Nutrition_and_Corticosteroids_in_the.5.aspx

Conclusions: There is no difference in efficacy between enteral nutrition and corticosteroid therapy in the treatment of acute Crohn's disease in children. Improved growth and development, without the side effects of steroid therapy, make enteral nutrition a better choice for first-line therapy in children with active Crohn's disease.

I would have thought all this was common knowledge by now as there have been so many studies like this one.
Good luck to all the Mums trying to manage their children's long term health!
http://www2.cochrane.org/reviews/en/ab000542.html

"Evidence continues to indicate that corticosteroids are more effective than enteral nutrition (liquid food) for treating active Crohn's disease.

Corticosteroid therapy is more effective than enteral nutrition for inducing remission of active Crohn's disease as was found in previous systematic reviews."


That's the danger in trying to find what you want, there are so many studies that you will find what you want if you look long enough. I still don't see enough explanation in your study, why this would be the case.

I never decided to link mine because I knew someone could counter it with a site that said the exact opposite. If you look for something, you will find it.

It's not common knowledge at all, otherwise every clinic would be using EN, and in two university hospitals here they do not, only when you are serverly underweight, but then that's a standard procedure for anyone who is underweight, as I was, it's not used as an alternative to steroids.
 
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We're talking about CHILDREN and not adults. It's a vital difference. My link is about pediatric trials - double blind and extensive.
You make claims that are inaccurate, and disturbing for the posters on this thread.
 
We're talking about CHILDREN and not adults. It's a vital difference. My link is about pediatric trials - double blind and extensive.
You make claims that are inaccurate, and disturbing for the posters on this thread.
There are studies that have shown this in children also, I assume the likelyhood of parents participating in blind steroid trials is extremely low, so these studies likely favor one outcome over the other.

There are also studies that show long term EN is not helpful in some children at all and does not supress inflammation, which can lead to worse case scenario:

http://www.ncbi.nlm.nih.gov/pubmed/16162683
"This suggests that long term nutritional supplementation, although beneficial to some patients, is unlikely to suppress inflammation and so prevent disease relapse."

No need to be so angry at me btw, I'll leave you and the thread alone, way too much drama for me.
 
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As you can see in MANY of our siggy links, we have tried other things. My 4 year old is currently FAILING on Remicade and Orapred, so yes, I am trying EN. Do you think I care if it will "just" alleviate her pain? If it does, I am beyond thrilled, as nothing else works AT ALL. I am told her chances of having her large bowel in 4 years are pretty slim.
If your child was on steroids, you would know that there is a real risk of stunted growth and bone density loss. While I would like my daughter's disease to be under control, I also would like her to reach her full potential in terms of growth. While I am sure these decisions are hard to make if you are an adult, they are heartbreaking for those of us who have children with IBD.
Oh, and we ARE under a pediatrician's supervision using EN to treat Crohn's (not to treat malnutrition).
While I always appreciate another point of view (and also welcome posters that aren't parents as you know personally what our children are going through), I feel that you are attacking those of us that are doing nothing but desperately trying to help our kids. Any helpful information is appreciated, but please, keep it positive!
 

DustyKat

Super Moderator
No need to be so angry at me btw, I'll leave you and the thread alone, way too much drama for me.
That is unfair kiny. Nobody is being dramatic, passionate yes but not dramatic.

Nobody here is against sound evidence or differing points of view but it needs to be carried out in a respectful manner. Each person or parent has to weigh up the pros and cons of the treatments presented to them and each person or parent has their own story to tell that makes those decisions personal and individual.

We are here to advise and support each other to the best of our ability but at the end of the day what a person does with that information is their choice and theirs alone and that is something to which we must always be mindful and respectful.

Agree to disagree and leave it at that.

Dusty.
 
ok dusty, just don't want to upset anyone because I seem to be good at that on forums, so I'll leave the thread before I do

hope the kids will be ok, with EN or without, doesn't matter in the end, I'm sure we'll get our cure fix soon enough
 
Hi All,
I confess, I'm a big chicken. I let the rest of you take on this challenge and I just listened. I knew that you would offer facts and studies that support EN. Thank you.

I have had to justify my decision to use EN to many people, including the doctors. Even though they saw nothing wrong with making me wait seven months to see a specialist for any other treatment, despite a positive scope and acute symptoms that caused an initial 35-pound weight loss, they found it unusual that a patient would want to try EN while waiting. (With the help of my pharmacist, I started EN four months before I finally got to see the GI--and the EN brought on remission--the scope and other tests were back to normal.)

kiny, if you are still reading, please understand that it is a very difficult decision to go on EN and then to continue treatment with partial EN and/or a specialized diet. It is not an easy thing to drink formula while the rest of your family eats the Christmas dinner that you prepared for them, but can't eat. Some of us have had cancer before and can't take the meds from the top-down approach. Some of us do get, and cannot tolerate, many of the side-effects from some of the other meds, like prednisone.

I did a great deal of research about what treatment approach would work best for me and chose the one that is best for me. Please respect people's choices to use the treatment that is best for them.

And to the rest of the members on this thread--a big THANK YOU.
 
I have to agree with Happy. The choice to have my daughter go on EN was a very difficult one. As you all know from my previous posts our doctor was not at all supportive. Caitlyn has only been on it 1 week and already it has been a tough struggle. Like Happy said it is sooo hard to see everyone eating around you and not be able to eat. My daughter loves to bake. She wants to own a bakery when she grows up and so it has been hard on her not to bake and eat anything that she bakes.
 

Tesscorm

Moderator
Staff member
Hi Kimmid,

I hope things are improving a little bit for Caitlyn! Would she consider the NG tube at all (you've probably discussed this, I just don't recall now...)? I'm only asking because, with the shakes, she not only has to sacrifice her 'real' meals but then also has to drink shakes that she doesn't like. With the NG tube, she will still have to give up her meals for a while but, at least, doesn't have the extra challenge of drinking the shakes she doesn't like. While not a huge upside, at least the only 'tasting' considerations she would have would be jello, broth, etc., never having to deal with the shakes. Just a thought...
 

AZMOM

Moderator
kiny - I think healthy debate is a good thing and hope you stay around. We all are doing the best we can with what we've got and we all agree this disease STINKS. Secondly, I think we all agree there is no one size fits all treatment or debate. As frustrated as I can get on here somedays, I value that you all challenge me to think differently, read a lot and weigh my options.

Group hug :)

J.
 
Hi Tesscorm,
She would not consider the NG tube at all she thinks it is worse than drinking the shakes. We had a good day today. Another girl has started a support group for teens with crohns and UC. Caitlyn and her met today and it was really good and helpful for Caitlyn. I hope we can find some more teens to come.
 

Dexky

To save time...Ask Dusty!
When my son was dxed in Dec. 09, we were not informed of any alternative to prednisone. If not for this forum, I'd never have heard of EN. I'd also never have heard of aloe vera, LDN,MMS(ooooh, wasn't that controversial?), etc.,etc.. The point is that all these options should at least be out in the open. I'm almost certain that if our GI had given us the option of EN at the time of our son's dx, and told us it was 50% likely to work as opposed to 85% with pred, we'd have first tried the EN. After remission was achieved, he was still going to have to have some maintenance med.

Kiny, I do believe your argument is valid. Replacing short term steroid with EN may not be worth the effort for many. Still, I'd have liked to have had the option. Kudos to all the parents who are doing their research ahead of the game:)
 
Ughh! Caitlyn is having bad pain again today. She was so good yesterday and stuck to the diet very well. I am wondering if when she got off it on Saturday if that stirred things up again?
 

Tesscorm

Moderator
Staff member
Hi Kimmid,

I feel so sorry for Caitlyn. EN is a tough challenge for someone her age (and for you, as her mom)! Unfortunately, I'm not sure that going on and off the diet will bring the inflammation under control. I know that Stephen's GI and dietitien were adamant that he could not eat anything (other than the clear diet) for the six weeks. Once that period ended, then he could start to eat foods again. My understanding is that the formula is so easily digested, it gave bowel rest and that the formula allowed the good bacteria to strengthen to reduce the inflammation and repair some of the damage. They were very firm in that this would happen only if Stephen stuck to the treatment. However, there are others whose instructions from their GIs are not as strict??? Such as Izzy who is allowed a little food. I don't know???... maybe our GI was a bit over the top with his restrictions???

Maybe the other teen in her support group will give Caitlyn some extra encouragement??? But, if not, maybe the EN just isn't for her. I'm sure it must be heartbreaking for you watching her suffer not only from the crohns pain but also in dealing with the diet. Doing the EN was Stephen's choice from the beginning (and he's older), so I didn't have to deal with the issues you are having. But, I know, I would have found it extremely difficult to force him to do it if he wasn't completely on board with it, both in actually making him stick to the diet and watching him suffer through it. This must also be causing Caitlyn so much stress which also can't be good for her... perhaps that part of the reason for the pain?

Thinking of you both...
 

DustyKat

Super Moderator
I don't think your GI was over the top with his restrictions Tess. My understanding is, for EN to be effective in gaining remission you must ingest only the formula for at least 6 weeks or as Stephen was allowed, some clear fluid along with it.

Dusty. :)
 
My 12 year old daughter was diagnosed with Crohns in the 90's. After 3 horrible years of watching her suffer, all on my own, I decided to try NG tube feeding. She was on TPN with a central line in her chest. The doctors did not support me. Told me that it "doesnt always work". I did my research and read up about how they do it overseas (I am in US). I ordered the NG tube and formulas and paid for it myself. For the first few weeks, she ate nothing by mouth - was not hungry at all. After a while, she started eating normally during the day, and tube feeding only at night. To cut a long story short - the end result was nothing short of a miracle. The central line came out, the Prednisone, Asacol, 6MP and everything else was stopped. She gained weight and went back to regular school for the first time in years with beautiful rosy cheeks. If any doctor tells you that once you start eating you get sick again, I can tell you that did not happen in our case. She stayed well for years. Please do not think that drinking Boost or Ensure or any other over the counter meal replacement drink is the same - it is loaded with sugar and is completely different. Although not meant for oral intake, if she was in a hurry, eventually she would just drink a can of Peptamen 1.5 slightly diluted with water.
 
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Tesscorm

Moderator
Staff member
Hi Kelly,

Great to hear success stories like yours! If you don't mind my asking, is your daughter following any treatment now? And how long has she been in remission?

Thanks
 
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