# Enteral Nutrition



## ben's rn

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


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## Dexky

ben's rn said:


> 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


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## Tesscorm

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.


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## DustyKat

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:


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## AZMOM

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


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## Sascot

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.


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## kimmidwife

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.


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## Josh'sMom

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.


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## happy

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.


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## Tesscorm

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:


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## kimmidwife

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.


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## happy

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.


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## Tesscorm

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.


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## Josh'sMom

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!!!


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## kimmidwife

I have a quick question. When doing the EN can you drink regular fluids still such as Gatorade? My daughter wanted to know.


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## kimmidwife

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?


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## happy

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".


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## Tesscorm

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?


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## happy

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.


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## Ashley1

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## kimmidwife

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.


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## Tesscorm

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:


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## Ashley1

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## kimmidwife

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.


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## happy

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!


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## kimmidwife

Happy,
I think she is familiar with EN but I will find out more when we meet with her.


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## izzi'smom

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.


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## Tesscorm

Angie, I just replied to your other post...

Good luck again with Izzi's new medication.


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## izzi'smom

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


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## Tesscorm

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!


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## izzi'smom

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

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.


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## kimmidwife

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.


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## izzi'smom

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)


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## DustyKat

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


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## kimmidwife

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


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## Ashley1

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## DustyKat

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.


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## izzi'smom

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!


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## DustyKat

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.


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## Tesscorm

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!


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## izzi'smom

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?!


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## Tesscorm

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:


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## kimmidwife

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.


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## Ashley1

I


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## DustyKat

> 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


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## David

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!


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## kimmidwife

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.


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## izzi'smom

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.


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## Tesscorm

Fine by me, David.


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## happy

Ok with me David.


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## kimmidwife

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.


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## happy

kimmidwife, I had only the EN and water, but others on this forum have had popsicles, jello and clear broth.


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## Tesscorm

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:


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## happy

Tesscorm,
I knew you would come to the rescue!


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## Tesscorm

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! )...  all in a day's work for a Crohn's mom! :heart:


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## happy

:ysmile:


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## kimmidwife

Thanks Tesscorm!


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## Dogluv

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.


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## kimmidwife

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.


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## Tesscorm

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:


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## DustyKat

Hugs to you Caitlyn and you too Mum. :ghug:

Thinking of you, :heart:
Dusty. xxxxxxxx


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## DustyKat

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







Dusty. xxx


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## kimmidwife

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.


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## kimmidwife

PS.Also what do you think about eggs? I think meats are harsh on the stomach but I would think eggs are more gentle.


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## Tesscorm

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


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## Tesscorm

Don't knoww abt corn 'pasta'. Stephen does eat corn nachos???  Just not corn kernals.


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## izzi'smom

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!


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## kimmidwife

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.


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## kiny

ben's rn said:


> 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.


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## kiny

Tesscorm said:


> 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.



Tesscorm said:


> 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.



Tesscorm said:


> 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

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)


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## David

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.


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## kiny

David said:


> 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.


----------



## kiny

Tesscorm said:


> -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



Tesscorm said:


> 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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## kimmidwife

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.


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## kiny

kimmidwife said:


> 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.


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## kiny

kimmidwife said:


> 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.


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## DustyKat

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.


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## kiny

DustyKat said:


> 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.


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## DustyKat

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.


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## kiny

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.


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## handle

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!


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## kiny

handle said:


> 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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## handle

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.


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## kiny

handle said:


> 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.


----------



## izzi'smom

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!


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## DustyKat

> 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.


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## kiny

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


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## happy

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.


----------



## kimmidwife

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.


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## Tesscorm

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

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.


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## kimmidwife

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.


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## Dexky

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


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## kimmidwife

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?


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## Tesscorm

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...


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## DustyKat

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.


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## Kelly2

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

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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## Kelly2

Hi Tesscorm,

The EN put her in remission for about 4 years.  She stopped the EN after 2 years, and just drank the cans of Peptamen orally to supplement her diet - and still stayed well for 2years after that.  She eventually flared again, and was put on Remicade.  She is older now, and although she does not do the EN like she did when she was a teenager, she does drink the dilluted Peptamen 1.5 when she has flare ups.  I sometimes wonder if we should do the EN again.

I agree with all of you - I just cannot for the life of me understand why these doctors in the States would give our children all these toxic meds, before at least trying something non-toxic like EN, which has no side effects.  If it can turn around someone who was as sick as my child was, then it could help anyone.  If it were their children, I wonder what their 1st choice of treatment would be.  I guess they live and die by their medical journals and sometimes have tunnel vision.  It is always so refreshing to meet a doctor who "thinks outside the box" and puts down all the medical literature and thinks about a situation logically.  It saddens me to think of how many parents there are out there, going through what I did, and no-one is even mentioning this form of treatment and its success.


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## izzi'smom

So glad to hear your story, Kelly2!
Kim...is Caitlyn's weight suffering? I know that we will need our tube replaced in two more weeks (yup, thinking about it already) and while day-to-day is going well, tube placement was AWFUL and I am already weighing (lol) pros and cons. Izzi's weight is now stable and her stools are urgent but more regular and a bit less frequent (if that makes sense...less mucous, closer to being formed) so I *think* it is helping.)
I wish you wisdom for your decision...I know I hate making them! (hugs)


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## kimmidwife

Hi Everyone,
Kelly2 How long was your daughter on exclusive formula before she started adding food back in? I am trying to convince Caitlyn that it will not work unless she just does the formula.
Angie,
Her weight is not an issue. If anything we have the oppisote problem She gained a ton of weight from the steroids.
Tesscorm, I know you all are right I just need to convince her. I really don't want her on those toxic meds.


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## Tesscorm

Kelly2 said:


> I sometimes wonder if we should do the EN again.



So, your daughter never tried the exclusive EN again?  I've often wondered about that...  whenever my son has a second flare, if going on the exclusive EN again would be as successful as the first time?

I've read stories where people have used the formula for short periods when flaring to increase their nutrition/calories but, I don't think I've ever read of someone who has used the treatment a second time to induce remission.


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## happy

Tesscorm,
The program that Dr. John Hunter suggests is EN to induce remission followed by a LOFFLEX diet  or full elimination diet to remain in remission. He suggests that if people relapse, they resume EN until they reach remission again and then resume the diet. His treatment is meant to be a lifestyle change, in that some people might not be able to tolerate certain foods. He suggests that the full elimination diet part of the treatment will take about a year to complete and that any foods that are not tolerated be retested periodically after that. He does state that a person's diet should be checked to make sure that it is nutritiously complete without the untolerated foods.

So yes, he expects that people might need to be on EN periodically for a short time to settle symptoms if they eat something that they cannot tolerate while they are working through the elimination diet. After that he states that people can use EN for a short time during times that they absolutely want to be well (weddings, grads, special vacations, etc.). As well, throughout their lives people might relapse and could resume EN as a treatment. He does state that people do get to a point where as long as they stick to their tolerable foods they remain well.

Info about his website and book are listed earlier on this thread. Also, I just wanted to state that the diet is meant to work on the same principle as the EN in that the EN has changed the flora of the bowel and the diet is meant to help maintain this change.

On a personal note I did achieve remission earlier this year on EN (documented with scopes and tests) but then relapsed on the LOFFLEX diet. I resumed EN and achieved remission again after only two weeks which I have maintained on the full elimination diet for three months.

Hope this gives you some more info.


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## beth

The whole point of EN or Elemental/Modulen/etc is to rest the bowel. Drinks like Elemental 028 and modulen are formulated to be absorbed in the first few inches of the small intestine. Drink it too quickly, and you overwhelm the bowel and it pushes the liquid through faster and doesn't get absorbed where it should. 
Eat _anything_ and you miss the point. It'll have residue that wont be absorbed so your bowel now has food in it again. And it may be something that it really does not like. Let alone consider that some of the benefit is thought to be that bacteria in the lower bowels are starved of nutrition and so over time there are less of them - some peoples symptoms may be triggered by bacterial overgrowth.

So if you are on EN or Elemental type feeding, don't 'cheat' don't eat something, until you are properly ready, or you are back to square one.


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## Tesscorm

Thanks Happy,

Thanks for the info.  It's something I will keep in mind for when he's a bit older.  Hopefully, I will not need to deal with this anytime soon!  Realistically, I know that Stephen would not be able to follow either diet plan now.  Even at his age, 17, he is still such a picky eater when introducing new foods (in his case, fruits and veggies have always and continue to be a constant battle), that trying to build a truly healthy diet while eliminating unhealthy foods would be an unsuccessful nightmare.  

He was able to do the six weeks exclusive EN because the discipline required was to NOT eat but, if he had had to drink the formula (rather than ingest through NG), it would have been much, much harder for him and it wouldn't have surprised me if he hadn't lasted the six weeks. 

If/when he flares, unless circumstances don't allow it, I will push for Stephen do the six week exclusive EN again and pray that it works again for him too!

Good luck with the elimination diet!  I really hope it continues to work for you and your remission continues!!!


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## happy

Tesscorm,
Thank you for your good wishes. I hope that all of the children and teenagers on this thread do well on their EN, achieve remission, and find a way to keep in remission. 

Parents, give yourselves a pat on the back for all of your hard work in helping your child with this form of treatment. It is not an easy thing to do. I was only accountable to myself when I was on EN.

When my son was ill as a child, he needed a medication that had to be mixed and consumed 20 minutes before eating, three times every day, for a year. This was extremely difficult as he was a very picky eater who loved sports (lots of travelling), and whenever we mucked up, his symptoms returned. Boy did we feel awful anytime that happened. However, that was a relatively simple treatment compared to EN via NG tube. So kudos to all of you for sticking with your child's treatment. :applause:


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## Kelly2

Kimmidwife - you asked how long my daughter waited until she ate again.   I had no guidelines from any doctors back then, and just did what I thought was best.  I remember that in the beginning, I turned the rate down VERY slow on the pump.  Then I would steadily increase it.  If I noticed that she had a runny tummy, I would turn down the rate again, and steadily increase it once more.  She did not eat any food for a good few weeks as she was so sick, she had no appetite at all.  After a few weeks, she started sipping pedriatric elemental drinks during the day, and then she started to eat pretty much anything she wanted within reason (no dairy/spicy foods and mostly chicken, turkey and fish).  I found that as long as the bulk of her diet came from the tube feeding at night, she remained well.  Over the course of time, she eventually stopped putting down an NG tube every night, and chose to just drink the Peptamen 1.5 instead.  It still worked for years.  Also, I wanted to mention that we did go back to the EN from time to time - whether by tube, or just drinking the dilluted formula very slowly, and it always worked.  Something I wanted to share that I think is very important, is that if you ever want to try the EN, to make sure they use the correct tube as it can make a huge difference in the comfort of placing them.  The tube I used was made by Kendall, and was called an 8 inch French tube.  So tiny and flexible - no wider than the inside tube of a pen.

I am so grateful that we all get to share in our knowledge and experiences like we do.  I know after all the research I have done over the last 15 years, I am quite a challenge when I meet with the doctors to discuss test results or course of treatments.  Knowledge is power and I'm happy that we have each other to share this with


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## kimmidwife

So Kelly2,
Do you think if she can get through about 3-4 weeks on the formula exclusivey then maybe we can start to slowly add food back in? I have been letting her have the clear liquids and also mashed potatoes becuase I read that mashed potatoes actually have antiinflammatory properties and are very good for people with stomach and intestinal ailments. Plus they are supposed to be one of the easiest foods to digest. She has been having bad pain for the past 2 days and we are getting her set up for an MRI to take a look becuase the pain is not in her usual spot it is actually on the left side and this has been going on for about 1 month now.


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## Kelly2

Hi Kimmidwife,

I just replied to your question, and then lost the whole post!! It just disappeared because I am not allowed to post URLs yet!!  So here goes again 

The million dollar question is what to feed our kids while they are flaring!  For as many times as we read that a certain food is good for them, there are just as many who say it is bad.  Then you throw into the mix, how different everyone responds and can tolerate certain foods, makes it even more frustrating.  However, I would not feed Caitlyn mashed potatoes.  I would try and avoid feeding her specific carbohydrates that are not digested easily in people with ibd.  It results in fermentation and overgrowth of bacteria, which causes inflammation and damage to the intestine in someone with ibd.  

Although over the last 15 years, I have researched the effects of nutrition on ibd, I think we need to carefully consider the results of the biochemist, Elaine Gottschall's 4 year research into the subject.  I have never tried the scd diet, but if Caitlyn does not want to try the NG tube feedings, perhaps suggest the scd diet to her.  Instead of mash pototoes, try feeding her scrambled eggs for breakfast, and homemade chicken soup for lunch (I use organic broth), or you could do a whole chicken in the slow cooker which makes it super tender and moist.   

Ideally, she would want to do the exclusive NG tube feedings for at least 3 - 4 weeks, and then slowly re-introduce foods, according to her symptoms.  You have to start slowly with the NG tube feedings, or the scd diet.  It is not recommended that you rush through either process.  I set the pump on very slow in the beginning, and over the course of a few days, depending on her symptoms, I slowly increased the rate.  I don't think she could do this by drinking the formula orally.  

Until you start the EN, why don't you consider giving the scd diet a try.  Here is a link for people who would like to start the diet, but have not yet bought the book, Breaking the vicious cycle:

Sorry it won't let me post the link - you will have to look it up, or maybe someone else can post it for you.


You mentioned that Caitlyn likes to bake, in time she could try the cake recipes found on scdrecipe.com - they all sound delicious!  Maybe one day she could open a shop which has a section that specially caters to ibs/ibd/celiac

Please let me know if you have any other questions, or if I can help in any way. (And remember that we are making great strides in research these days!)


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## kimmidwife

Kelly2,
Thanks for the advice. It's been a rough night Caitlyn was crying that her stomach hurt and she can't stand doing the EN anymore. I disucssed with her adding a few foods from the SCD and still staying on the en and seeing if that would work. Her Father put his foot down with her and insisted she listen to us and try it this way. I understand how hard it is for her, but we really just want to help her. I told her bout SCD and not eating potatoes. (she was only having a tiny amount once a day) We looked over the website on SCd. We decided to continue her with the clears, the formula, and add in eggs which according to SCD are okay. so we made her clear broth with an egg in it (kind of like chinese egg drop soup) It hurt her stomach but everything she's been eating (even the formula) has been causing her pain. we have an MRI sheduled for next Thursday. Hopefully it will show what is going on on the left side which is where she is having most of her pain now.


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## David

Thanks for sharing all the info Kelly.  You should be able to post links now.  Sorry for the issue, it's a tool we use to stop spammers but unfortunately sometimes affects good members too


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## Kelly2

Hi Kimmidwife,
I was thinking about you today, but was so rushed off my feet, i did not have time to correspond.  How was Caitlyn today?  Does she enjoy drinking the elemental drinks, or is it something she has to force herself to do?  Was just thinking that perhaps a G tube might suit her better if she can't stand the idea of an Ng tube. I think you are doing the right thing in trying to at least get the majority of her nutrition from EN. Pain in the lower left side of your abdomen would normally indicate something like diverticulitis but in IBD would more than likely indicate an area of inflammation or narrowing. I hope it resolves itself through the EN you are doing. 

David thanks for explaining why I could not post my message - makes sense now


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## kimmidwife

Hi Kelly2,
Caitlyn does indeed have to force herself to have to drink the shakes she hates them. I asked the doctor about a G tube he said in Crohn's it can cause issues and they try to avoid using them. She refuses to try the NG tube. Last night she had a bad night again crying that she can't take it. So we have decided to continue the EN but allow her to eat the foods approved on the SCD. She had some egg and a little boiled chicken.  She felt a little better just being able to eat a little. She is in a much better mood today. She did have pain after eating. She also has not been drinking her formula so has not been consuming enough calories which I think was one reason she was so irritable yesterday. I am not worried about her losing weight she gained 10 pounds from the steroids and she was at her ideal weight prior to them. I just want her to feel good and be happy and get healthy.


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## JohnnyRottenAppleseed

I have health insurance. Is Ensure or any other liquid diets covered? Can my family doctor prescribe this? My GI never mentioned it


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## izzi'smom

Our formula is covered (I *think* the receipt said it was some ridiculous amount, like $2000) with a $35 copay. We did have a script.


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## Kelly2

Hi Kimmidwife,

I feel so bad for Caitlyn (and you!) having been in this predicament myself.  I think you are doing the best you can, and that is all you can do! I am so sorry that she has had a tough time with the EN.  You know my child would not do the SCD diet!  I just want you to know that I don't necessarily agree with what her doctor said about the gtube.  They have done a number of studies on the effects of gastrostomy for crohns and concluded that it was safe - here is one of the studies.

http://www.ncbi.nlm.nih.gov/pubmed/9177515

Another study concluded: 

CONCLUSION: 

Nutritional therapy is important in the management of children with growth failure due to Crohn's disease, though it may not be the only factor affecting growth. G-tubes are safe and well tolerated by children with Crohn's disease and should be offered to those children who do not tolerate prolonged use of an NG-tube.


I just wanted you to know this in case one day, you really needed another treatment option.  How many Remicade infusions did she have before she failed the therapy?  Did they do lab work to see if she made antibodies againt the Remicade? 

Is she still having the lower left abdominal pain?  Its a pity they could not get her in earlier for her test to determine what is causing this!


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## izzi'smom

kim, I just wanted to mention that I have noticed a MARKED difference in Izzi when she ingests food. Her dad will offer her meals so she tends to eat often when she is with him and she does far worse on those nights (up 5-8 x a night) than she does on the days that I have her (I eat when she is otherwise occupied and never offer her food, although if she asks I will usually allow her something [she rarely asks]).


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## kimmidwife

Hi Kelly2,
Thanks for the info on the G tube if we end up needing it I will definitly now have proof to bring the doctor. She is having a lot of stomach pain especially on that left side and at other times it is everywhere. Today was a bad pain day she said. 
Izzi,
SHe is having a very hard time with the not eating so I am letting her eat foods that are okay on the SCD. Basically plain chicken, eggs, and beef.
I also read about this other diet called the paleo diet or the caveman diet which seems to be pretty similar to the SCD.


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## Kelly2

Hey Kim,

Was thinking about you guys today and wondering how everything went with the MRI?  Do you have to wait to see the doctor again to get the results?

Kelly


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## kimmidwife

We have to wait for a phone call from the doctors, crossing our fingers that it'll be tomorrow.


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## Tesscorm

Hope it's a good call!! :thumleft:


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## kimmidwife

I hope so too. I also spoke with the doctors about the Remicade and checking the antibodies. He was going to check with our insurance and if they cover it will run the test. They drew the blood at her MRI appt when she had her regular blood work done. Caitlyn said they had a different contrast at the MRI today and it tasted a little worse then usual. She also said the IV contrast made her stomach hurt. Tonight she is feeling very nauseas. I am hoping she will be able to go to school tomorrow.


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## Kelly2

Thanks for the update.  I sure do hope that you hear back before the weekend - its always frustrating when the weekend comes, and no news and then you have to wait until the following week.  I'm so glad to hear that you are having the lab work done to see if Caitlyn has built up antibodies against the Remicade.  Without insurance, the cost would be $225 from Prometheus.  It really would be a shame to cross Remicade off the list, if it isnt necessary, as it has healed and kept so many others in remission.  My daughter was on and off of Remicade for well over 10 years and it really pulled her out of some serious flare ups.  In fact, she was one of the 1st pedriatric patients to test drive it back in the day.  I sure do hope that Caitlyn feels much better tomorrow.


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## kimmidwife

Thanks Kelly2!


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## Tesscorm

Hope Caitlyn's feeling better.  Stephen had an MRE on Monday and felt unwell all evening - nausea, cramps, D, etc.  He started to feel a bit better by late evening and was fine by Tuesday morning.  Hopefully, Caitlyn's better now too.  :rosette2:


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## kimmidwife

Hi Tesscorm,
Caitlyn is still feeling nauseas and her tummy is hurting as well. She is also feeling very dizzy. Is an MRE the same as an MRI? 
ALso does anyone know if quinoa is allowed on the SCD? I am trying to get a good list of the foods allowed. I am trying to avoid buying the book as I bought the other book beat crohn's with EN just a month ago and am trying not to spend to much money right now.


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## izzi'smom

Posted RE MRE/MRI on your other thread...


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## Kelly2

Kim,

Quinoa would be considered an "illegal" food on the SCD diet as it is 60 percent starch.  Here is a complete list of legal and illegal foods for the SCD diet, that I think you will find very helpful.

http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm


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## ben's rn

*Ben Update*

Well we tried hard for 2 years to stick to EN as primary crohn's treatment...for now 8 year old Ben.  but, alas, it has ultimately failed to keep him in remission.  Ben was just not tolerating 100% of calories via his g-tube at night, nausea & vomiting episodes every week, so, he was re-scoped and did a pill cam study which shows severe inflammation all over small bowel.   BTW - pill cam is still stuck almost 2 weeks later, another thread?

He starts Remicade on Friday   no other meds with it to start, so I am very optimistic he will be fine....hopefully much needed relief from crohns..maybe even remission in the near future.  

I would recommend folks try EN cuz it did work, well for the first year, and kept him off meds for a year...important when our crohnies are diagnosed so young and face a lifetime of treatment and scary meds. Ben did gain weight and grow several inches during the 2 years...but, it can be a weary protocol, especially if you are a single parent who works full time and have other kids and it kept him in pullups along with diaper rash, and other unpleasant side effects.  We look forward to Ben getting out of pullups and growing up some now!  I look forward to a low maintenance therapy, easier on us all.  Maybe washing his bedding on a much less regular schedule (daily now)...


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## DustyKat

Hey ben's m...:bigwave:

I have responded on your other post but will say again....thanks and good luck...:goodluck:

Dusty. xxx


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## Tesscorm

Sorry to hear that he hasn't been well.  I hope he moves to remission quickly!!!

Agree, exclusive EN is certainly a worthwhile treatment to induce remission, however, I can't imagine how difficult it must have been for both of you to maintain for such a long time.

Sending wishes that he feels well very soon!


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## AZMOM

I know you must be frustrated. But you sound at Peace with the path you are taking. Prayers that Remicade will help him quickly!

J.


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## kimmidwife

Sorry to hear it stopped working for him! Hopefully the remicade will work!


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## kimmidwife

Interesting EN story I wanted to share:
I met someone the other day whose son has crohns disease. He is now 37 yo and was diagnosed at age 16. After diagnosis he participated in a study being done at the local children's hospital (I think it was in Omaha Nebraska) on EN vs prednisone to induce remission. He was kept on exclusive EN for 6 months. He was also allowed clear liquids such as sprite, water, and Jolly Rancher Candies. AFter the 6 mod he went into remission and has been in remission since then. He does watch his diet but has really not had a flare or problem since then. I think that is amazing and again makes me mad that our doctors did not offer this to us when our daughter was first diagnosed.


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## DustyKat

I too don't understand why the US doesn't use EN more in children. I can well understand your disappointment and frustration that this option was never suggested or offered to you.  

Dusty. :hug:


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## kimmidwife

I really think if we were told in the beginning it was the best option that it would have been easier for Caitlyn to accept and do it. When we tried it now she was older and not as willing to listen to us being a teenager.


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## SupportiveMom

So after a bad month and even worse weekend my D has decided she can't do this anymore. Her symptoms aren't subsiding, the prednisone taper is making things worse and all she is thinking of is spring is in sight and she can't manage another summer tied inside. She is ready for surgery. When last we visited the doc she mentioned again feeding tube, but kinda put a negative spin on it that her patients don't ask for it, it's not a favorite way of treatment for patients, etc. After our lengthy talks the last few days D is ready to try the EN before surgery. (I want to avoid surgery as much as possible) My questions after reading through the EN forum & this thread are this: 

1-Is she wearing this all day except for bed, or only bed? Do you get to chose this or does the doctor decide? Do they put the 'food bag'' in a backpack they wear? or is it put on something they can secure around he waist?

2-I see Tesscom 's son did lots of activities with it. How was the energy level? Besides swimming was their anything he avoided?

3-How hard is it to put in/remove the tube? Can it just be left in 24/7 so she won't have to deal with the awkwardness or pain of removing/putting in the tube? Both D & I are nervous about this part.

4-I was told to get decent results you normally have to stick with this for a minimum of 3 months. What was peoples time doing this?

5-Can it be removed for special occasions? D is having her 8th grade graduation & is concerned with being the kid in all the pics with a tube.

6- Is there something you wish you could have done differently in this process? Any tips to start out?
Thanks for any feedback!


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## Farmwife

I'll tag in Clash as her son has started this and is older.

I'm not much help. Grace was four and had her n-g tube for four months and then has a g-tube permanently place. It's definitely worth it for us.

Your poor girl. Hugs to you both.


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## Clash

C has been doing EN with a ng tube for several weeks now. The parents on crohnsforum have been invaluable during this process. First, I guess I need to say C has not been doing exclusive enteral nutrition, his has been 90/10%(90% EN/10% food).

1. C put his in around 5pm and takes it out in the morning when he started out. How long it takes the feed is dependent on the speed at which he sets the pump. He has now worked up to a speed that allows him to put it in later in the evening and take it out in the morning. Also, he doesn't always take it out, he will sometimes leave it in and just flush it if he had nothing planned. You can get a backpack if you so desire, not sure if you purchase or the ins company does. We have an iv pole that was delivered with all the supplies but he has fitted one of his old backpacks with the equipment when we have traveled.

2. Since C takes his out and I believe Tesscorm's son did too then there are no restrictions, I can't speak to energy levels since C also deals with a form of arthritis that can zap his energy but he does swim therapy for the arthritis. One of the main reasons C was placed on EN was due to an inability to gain weight. The day before EN was started he weighed 111 lbs on our scales at home this past Friday he weighed 126 lbs so it has been great for his weight.

3. In the beginning, we had a lot of issues with putting the tube in. This was due to the fact that the dme company was sending a larger tube(8FR) and the tubes also had no stylet(guide wire). Thanks to the parents on the forum I found the right size(6FR) and knew to order with stylet. Since then it takes C no time to replace the tube(seconds for actual placement) and there is absolutely no pain.

4. C will have his in on 90% for at least 8 weeks then he will either continue 90% for 4 more weeks or gear down to maintenance which will be a lot less than 90% bit used to help him maintain weight gain.

5. In C's case he removes all the time so it would be a yes for removal for special occasions, in fact prom is next weekend and he will switch feeding times to ensure he gets all of his formula but will take it out for the day and evening for prom.

6. I wish I had known about the tubes with stylets, they are so much easier than those without. In the beginning, he would swallow water to get past the gag reflex and that helped a lot, now he doesn't have to. Also , keeping his chin to his chest helped keep the tube heading in the right direction. Due to the issues with not having tubes with stylets we had a few rough days and I am so grateful that all the knowledgeable parents on here guided us during that time. Now it really is no big deal for him to remove and place. I do notice that he will just leave in and flush during the week a lot since he attends a flex school that allows for independent study.

I hope some of this helped. I'm sure Tesscorm will be by as well and truly once you get the hang of it all it isn't a task to be dreaded at all. Good luck.


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## my little penguin

One other option is drinking it orally.
DS absolutely hated the taste but really did not want a tube.
He drinks peptamen jr .
I know jmrogers son drinks peptide jr.
It took over 2 hours for him to drink the first one.

A rough couple of days then he was fine.
He did 100% EEN no food and now continue on maintence of two to three a day.
Some kids have used kids boost or pediasure without a tube -crohnsinct kiddo

Good luck


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## SupportiveMom

We have done the oral method to massive failure. Taste is a big issue. D has been on modulen orally and couldn't keep it up during time at home away from the hospital. This is why the doc mentioned the tube. That, and me mentioning Tesscom's son doing it with success.

D is now down 9 lbs since beginning of February when in the hospital. Weight is a big issue. She is already marked as 'fail to thrive' in her chart as she has not grown at all since all of this. 2 years and no growth at this age are big red flags. This is almost her last growth period. I am very concerned. The decision of EN is not a light one for us, but more the thought that nothing is working and we need to consider all options. This I think maybe we should have done a while ago.


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## Sascot

My son hated the taste so had the NG tube for 8 weeks. He kept it in for the full time - both of us were quite relieved not to worry about putting it in again! Energy levels were quite good while on EN and he continued sports throughout. He went to high school with the tube attached o his cheek and was fine. No one teased him and he seemed okay.
I "fed" him at mealtimes with the formula, we didn't have a pump or anything going at night. 
Good luck, I definitely think it's worth it


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## Twiggy930

My son also used a NG tube that he inserted every evening and removed every morning.  He was 10 years old when he did it.  I too was very anxious about the inserting of the NG tube but somehow my son wasn't and approached the whole thing as if he was learning a fun (think 10 year old boy humor) party trick.  He spent 1 hour with the GI nurses learning how to insert the tube and they just talked him through it and got him to do it himself the very first time.  It was such a non issue for him I couldn't believe it.  For him the hardest part was finding where the tube has to take a turn at the back of the nose.  It wasn't painful but just took a bit of fiddling to find the right spot.  In about 5 days he could insert the tube with absolutely no help from anyone in 12 seconds flat (he made me time him).  If I told him right now he had a choice between a course of prednisone or EN via an NG tube he would choose EN without hesitation.  My son is such a picky eater he would find drinking the shakes a much bigger problem than inserting the NG tube.

My son also used a 6Fr size tube but we took the guide wire out before inserting it.  This was just part of the instructions that the nurses gave us from the beginning and we didn't question it as it all worked out so well.  We also used some lidocane gel (the kind you can use for teething babies) on the end of the tube and he would kind of snort it up his nose just before inserting the tube.  He used the gel for about the first week and then he decided that he didn't need it.

When my son was on EN he was very underweight and it was a HUGE relief for me to know that he was getting the right amount of nutrition.  It was so much easier than nagging him to eat more all the time.

If your daughter is up for it have her do the inserting of the tube, even the first time, rather than someone else.  I think that it is much better for the person getting the tube inserted to do the inserting as they can feel when to stop pushing and where to adjust the placement of the tube etc.  If someone else is inserting the tube there is inevitably a bit of blind pushing around of the tube which I think must be uncomfortable.

Lastly my son did EEN for 8 weeks.  He was allowed clear fluids (pop, broth, apple juice) and a small amount of hard clear candies (lifesavers) and gummy bears.

Good luck.  I hope it all goes well!


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## crohnsinct

Hey supportivmom, 

I am so sorry that D is having such a rough time of it.  I am a big advocate for EEN for achieving remission and for supplemental nutrition for weight gain and growth.  However, I think the most important thing for D right now is probably getting her to remission. Once you get inflammation under control whether with drugs or EEN she will absorb more nutrition and the growth/weight gain will follow.   EEN has an excellent success rate at at achieving remission and mucosal healing but once EEN is discontinued it is usually just a matter of time before the disease creeps back in. Some supplemental EN has shown some success at extended the remission period but most kids find they eventually need some maintenance meds.  My daughter was having a hard time achieving remission on Remicade and with steroids because every time we tapered the steroids the disease kicked up a notch.  We introduced EEN to help the Remicade along and it did just that but she stayed on Remi the whole time.  Maybe just maybe D is the same and Humira just needs a little boost.  

FWIW O did 8 weeks EEN then transitioned slowly to food.


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## SupportiveMom

Thanks CT. 

I know we are in trouble when D starts giving up or willing to consider things previously turned down by her. EN has to be a better way. Tess spoke so highly of it for her son. The meds just don't seem to be enough for D and I don't think uping meds are the answer anymore. Almost 2 years and we still aren't at a manageable state. EN seems like such a natural way of treating things and maybe we should have done this a long time ago. I have to they this before I let them do surgery on her. I will kick myself if I don't look at all options before surgery.

I'm headed off to the local crohn's chapter meeting now and am looking forward to hearing some adults take too. 

How long was your daughter on EEN cct?


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## Jmrogers4

We did 8 weeks of EEN, this last fall and 6 weeks of supplemental about a year ago to try and get weight up.  I'm a huge fan of it and I think whatever delivery method will work.  Jack chose to drink the formula and I will say the negative to that is you really have to be on a schedule to get them all in.  Jack was never hungry so he wouldn't think about them.  If he slept in then we were behind the ball to get them all in, kwim. He needed 8-9 a day so it was roughly 1 every 2 hours and they needed to be cold so going anywhere you needed to plan how many do we need to bring.  
He did go to his first school formal dance while on EEN dinner was interesting but he had a great time and we made it work.


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## crohnsinct

Same as above.  8 weeks EEN then a slow reintro to food.  She wasn't allowed anything but water during the exclusive period. Oh wait...allowed to chew one piece of gum a day.  She drank Boost and Ensure and they worked.  Our doc chooses to try the most palatable formulas orally first and if they don't work he goes down the line to semi elemental and elemental but as you go to the less palatable there is a higher chance you have to use the tube.  Boost and Ensure worked for O.  

She did hers around the same time and there were bat and baz mitvahs galore and she walked in with her little cooler of shakes.  The class took a cruise at the end of 8th grade and we sent a case of shakes.  Cousin got married and shakes went to.  She drank 10 a day because of her activity level.


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## Tesscorm

I'm on my phone now so will keep it short but everyone abv has pretty much said all I'd say. S inserted his tube nightly and after just a few days, it was no issue at all. Given the choice, he would also probably still prefer the tube trust her than drinking that same volume orally. His energy level was great - he started back with 2+ hours/day of fitness and phys ed classes plus two hockey teams within 2-3 weeks (although it took longer to regain his pre-sick stamina and muscle). And as clash's son, adjusted his schedule or pump speed to work with his schedule. I'll try to get on the computer ltr if u hv more questions.


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## Tesscorm

Just some extra info since D is being treated at the same hospital as S was...  I was surprised you said the dr put a bit of a negative spin on it??  When S was diagnosed, steroids were only vaguely/briefly mentioned, it was all 'EEN is the treatment' but I don't doubt severity/location/etc. play a part in treatment recommendations.  At the time, the hospital was using only Tolerex, which is not drinkable so perhaps that is why only the NG tube was offered.  At S's diagnosis, their protocol was EEN through NG tube overnight and removing tube in the morning (keeping the tube in wasn't even mentioned as an option??) and clear fluids during the day - very much like Twiggy's options - ginger ale, 7-Up, gatorade, apple juice (no fibre), clear broth, freezies, popsicles, jello, hard clear candies.  We were not given any limit re the clear liquids (other than watch sugar in candies).  S would take broth to school so he could have lunch with his friends and I arranged for the school to keep a box of freezies so he could grab a couple every day.  He'd then have broth for dinner again and whenever else he wanted it.  Breakfast, lunch wasn't much of an issue because he said, after ingesting the formula all night, he wasn't really hungry.  Evening was a bit tougher as he'd be getting hungry by then - the broth helped but, really, distraction was the best solution.  If I known more about EEN at the time, I probably would have asked his GI if he could add a Boost shake here and there to lessen daytime hunger.  

Scheduling was a bit of an issue when he was on full EEN as he was taking in 2000 ml - which required 8-10 hours to run.  When S had a late hockey game, I did allow him to miss first period class so he could finish the formula.  A couple of times, he also just ran the formula for an hour or so after school to reduce the amount overnight (but this meant inserting/removing tube twice).  So, the schedule was workable, just needed a few 'accommodations'.

As Clash's and Twiggy's boys found, after a few days the insertion was nothing and S also asked me to once 'time' him and it was approx. 10 seconds.    Removal in the morning is even simpler - it just slides out.

S did find the sensation of having the tube in his throat bothersome the first couple/few days - not painful, just the feeling of something there... but he became used to it quickly.

Once he was on supplemental only, it was even easier as it was half the amount so he would put in the tube immediately before bed - at half dose, formula only ran for 4-5 hours, so easily done while sleeping.

Also have a look at some if imaboveitall 's posts - her daughter has also done EN through NG tube for years as a treatment/supplement.


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## SupportiveMom

D is being seen by a few docs now to get to the bottom of everything. She has 1 @SickKids & her regular GI she has had since diagnosis. It wasn't the SickKids doc speaking negatively of EN, it was her GI. This was way back after her anaphylaxis reaction to Remicade when we were discussing alternative options now that we couldn't do Remicade. 

Right now the SickKids doc is only being used as a consult I think. We went through everything at SickKids as if D was never diagnosed, and did blood work, MRE, Ultrasound, colonoscopy and a consultation with the nurse & Dr. Griffiths. I have heard nothing back from the IBD Center except to confirm her diagnosis (duh!) and that Dr. Griffiths would be consulting with D's GI. That was about a month ago. So far there has been no change of care except coming off Prednisone. 

This is why I think we are looking at options again ourselves. Maybe they thought since I haven't been screaming for care things are better and no need to rush the process. After another bad weekend and now a total of 12lb weight loss in 3 weeks I called the GI this morning and we are going in today. 

I will be asking to do the EEN at the appointment today. I am refusing to let her go back on Prednisone. The withdrawal was horrible and did nothing for her. I'll let you know how it goes. I am printing out the thread so I know what to ask for and ask about.


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## SupportiveMom

So EN is ordered. It is inpatient in the hospital for 3 days. Anyone have to check into the hospital to start this? Evidently there will be a PSW that will come to the house too.  It doesn't seem like it needs to be that complicated.


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## Twiggy930

That is really weird.  My son literally learned all he needed to do in 1 hour and he was 10 years old at the time.  No hospital stay needed.


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## SupportiveMom

Twiggy where in canada are you?


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## SupportiveMom

I found it weird too. They have youtube videos on it so it can't be that complicated. Not sure what a 3 day stay will accomplish except boredom


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## Maya142

That's really strange. Our GI has brought up ng tube feeds many many times and at our hospital it's a 2 hour outpatient appointment.


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## SupportiveMom

My SIL is a nurse, trained in Ontario, practices in FL. She just told me it can be done as outpatient but because of the crohns in her esophagus the doc might just be overly concerned in case she vomits or has a reaction to the tube. She thinks the doc is being extremely careful.


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## Tesscorm

S was already in the hospital when he started EEN...  but they did start it two days before he was discharged.  They'd said they would be increasing the rate/speed until he was at a level where he could get it done overnight.  But, yes, the 'learning' certainly didn't take very long.

What your SIL said makes sense re her esophagus.


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## SupportiveMom

Right now D says she wants to leave the tube in 24/7 and just hook up the 'food' when she is home. She has never been one with issue of what people think of her. She might be able to pull it off. Either way we need to know how to take it out/in. Doc said she would get a PSW to check in on her with it once home too. Looks like there will be a little bit of learning but manageable. Staying overnight in the hospital for a few days will really stink.


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## Twiggy930

FWIW my son also had Crohn's in his esophagus at the time of doing EEN.


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## SupportiveMom

Did anyone use a pump or was it done by gravity? Thinking of time it might take. Is pump a better way to go?


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## Clash

We use a pump. It is definitely quicker and the adjustment of speeds as he sees fit affects the length of time the feed will takes. Also since he is up and down and active I would think the pump would be a better choice but since a lot of kiddos are doing night time feeds gravity may work just as well. Good luck.


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## imaboveitall

We are (sadly) experts on enteral feeds as V has done them for nearly SIX YEARS, every night.
She had tube placed in hosp under sedation initially BUT that was because she was dying, and I was not in a state of mind to question anything, nor was she.

She left it indwelling for three mos, went to school (fifth grade) that way and then over Christmas break started taking it out/reinserting it in the morning.
She was so malnourished that at first she needed 24, then 16, hours/day of feeds.
Now she is hooked up just four hours, at a rate of 250cc/hr.

PM me if you feel inclined, I know V would Skype with any kid who needed to watch her insert, and is open to being Facebook friends too. ( I myself do not have Facebook). She cannot understand why everyone makes tube insertion such a big deal. :eek2:


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## SupportiveMom

Thanks. I will talk to D about connecting. It would do her some good. I think it is the not knowing that is the concern. Once we get in there and understand it all it probably won't be a big deal. This is our first bout of this, as the last time she was on TPN, so the only thing about that was just IV with a PICC line, which was no big deal after everything.

Why have you been doing this for 6 years? What are the benefits for doing it that long? We are trying this to prevent having to double up on the Humira or going back to Prednisone. Doc thinks 6-8 weeks of this will help and potentially put her symptoms into remission. If I remember my conversations with Tess it was a short term solution for her S. I am hoping it is a short term solution for my D too. Is there anything I can do to promote the short term solution to work for her?


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## imaboveitall

No, Tess' Stephen used it for years.
The rationale behind the long term use is, it WORKS so why stop it?
Yes it can put them into remission, but when it is d/c, they often relapse.

For V, I was VEHEMENTLY against using meds and we used the feeds ALONE, NO drugs at all, for three years and she  had a great clinical remission, the key phrase being clinical, which means she felt great/looked great/was growing/ was nutritionally sound/went through puberty BUT had simmering inflammation all the while.

Feeds were not enough after three years she began having extreme fatigue (her usual symptom) so drugs were, one by one, added and failed.

The other rational reason for using feeds long term, even when they are not enough to maintain a remission, is the pure nutritional aspect. I didn't want her undernourished ever again. They DO have malabsorption. They DO have growth issues so commonly (the kids at Camp Oasis looked like waifs to me next to V) and they do often have disease present even when appearing well.

These kids will need treatment always. ALWAYS. Be it drugs or feeds. So if I can accept long term dangerous drugs, formula feeds are a walk in the park to accept.

Tell your girl about Starbright World also, an online place for teens with chronic illness.


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## Tesscorm

Yes, ditto to imaboveitall's comments above.  S did 6 weeks 'exclusive' but then continued with supplemental/maintenance for two years with no meds (except an antacid).  Same as V above, clinical remission but simmering inflammation so we added remi after two years.  When S left to go to university, he didn't want to take the pump, etc. and it was a harder sell as his GI had told him he didn't need it as he was now on remicade.  However, I'm more inclined to agree with imaboveitall in that they require extra nutrition (and I also very much believe their nutritional status just generally helps their wellbeing) so, S and I compromised - he drinks 1-3 Boost shakes per day at university.   I also read an article that showed there was a significant increase in remicade's success when it is combined with enteral nutrition (it is posted in the kids' research section) - I also shared that info with Stephen.


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## SupportiveMom

I have to ask... Pumps, bags, food for the bag... Is it normally covered by insurance? If not how much are the pumps? Where do you get it? I know boost and whatnot aren't covered. Doctor thinks as long as it is her only nutrition all of it is covered but its been a few years since she had someone willing to try it.

Imaboveitall, D is on Starbright. Not as active as she should be though. She says she isn't finding what she needs on there so just is sticking with the friends she has without Crohn's for now. I am really hoping this Gutsy Walk she meets some kids to talk with. Last year everything was too new and nervous about making friends.


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## my little penguin

The answer for insurance - is it depends....
Ds has had his covered for the past three years but he drinks his orally and will continue until he is 18 if i have my way. Although the GI said he could stop if he wanted too since he is growing and gaining.:batty:

But I explained that DS is not fighting it now so until he is - he drinks the peptamin daily even if its just one vs his normal 2-3


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## Tesscorm

My insurance did not cover any of it - in our case, it was considered a nutritional supplement only.  However, the nutritionist at the hospital, who helped with info re insurance, regional medical agencies and Trilogy said that they did have some patients whose insurance did cover it (so depends on your coverage).  In our case, a regional medical agency did cover all of it.  The agency rep came to us at the hospital and then S's care was transferred to the local office.  We were also told that Trilogy healthcare (a provincial medical service) would cover it if insurance did not.  Apparently, no one is declined through Trilogy but they do take a deductible based on your income.


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## SupportiveMom

Thanks Tess. I will keep Trilogy in mind. I did find this on the web in case anyone reads this thread down the road with this question. http://www.health.gov.on.ca/en/public/programs/adp/publications/enteral.aspx explains how the Ontario government pays for it.


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## Tesscorm

SupportiveMom - just looked up what I'd mentioned...  not Trilogy, it's Trillium.    Link is:

http://www.health.gov.on.ca/en/public/programs/drugs/programs/odb/opdp_trillium.aspx


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## Santafish

Our experience with EN treatment was very similar to Tesscorm's. Our GI initially recommended this as a preferred treatment to using Prednisone to induce remission. At first we were squeamish about the thought of having the NG tube inserted and were nervous about the thought of having to live with the tube. After some discussion with the Pediatrician we agreed that there were fewer side effects and if it ended up not working, we still had the option of using the steroid treatment. 

Our GI explained that we would only be using this treatment to induce remission. He wasn't confident that this would keep Maddie in remission long term so the decision was made to start her on Imuran. 

We found that while the NG tube was in that she could do almost anything. The only activity she discouraged from was gymnastics because of the bouncing around. 

Because of her age (3) it wasn't feasible to insert and remove the tube daily. We were eventually trained by the Pediatric outpatient department on inserting the tube ourselves. While a bit scary at first, it turned out to be not so bad. Better than the cumulative side effects from Prednisone. 

We found that the worst part for her was right after the insertion of the tube. She would be in a little discomfort but mostly angry with us that she needed it in. Usually a couple hours of a combination of angry and mopey. (To be fair, I'd be pretty upset too) after that, she'd be fairly happy and close to her usual self. Usually a week into treatment she is feeling well enough to head back to daycare. The good news is that kids are pretty easygoing at that age and don't seem to be affected at all by the tube attached to Maddie's face. They also like the stickers that she shows up with. (The hospital sent us home with a large number of the "Feeding Friends" stickers.)

Anyways, we've now been through two 6 week periods of treatment and we still have the pump, IV pole, 2-3 months of bags and formula (ensure plus is what our dietician recommended) ready to go if we need it. We also have a spare NG tube at the ready for when the next flare happens. We hope it won't be needed anytime me soon but it's better to be prepared. 

Feel free to ask if there are questions if you want. Our GI made it sound like EN was a preferred treatment to steroids so I was a bit surprised to see it wasn't even an option for some people.


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## crohnsinct

Here in the states it depends on your insurance as well.  O's EEN was Boost and Ensure and it was all covered.  She drank it.  The company delivered cases of it at a time.


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## SupportiveMom

Maybe part of the reason we are heading to the hospital in all this is to get insurance to cover it. I was told things were quicker to approve us for Remicade because they gave us a dosage in the hospital forcing insurance to approve quickly for her next dosage in 2 weeks. The patient care for Remicade had told me it gets approval faster and easier because they can't deny or argue the claim. Doc mentioned Modulen again as D tried it her 2nd time in the hospital and couldn't stick with it due to the taste. I know the cans were covered when we went home. I'm more concerned with the tubes and pump. I'm supposedly saving money by not buying her food, so its probably a wash but when I looked online the pumps were like $500+ Ouch.

I know about Trillium Tess. We didn't qualify either due to income.


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## Tesscorm

Sorry about Trillium - we were told that no one could be denied??  Perhaps their policies have since changed??

You don't have to buy the pump, they can be rented as well.  And, there is a possibility the equipment (pump, tubes, etc.) may be covered by your insurance even if the formula is not - I do remember my insurance mentioning something along this line but, in the end, I didn't need to pursue it.


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## imaboveitall

More likely to be covered if administered via tube, I was told.
You can find pumps and bags on ebay if you ever have to; I looked there when I wasn't sure hers would be covered. This is in USA though.


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## kiny

SupportiveMom said:


> Doc mentioned Modulen again as D tried it her 2nd time in the hospital and couldn't stick with it due to the taste. I


fyi, there are tastes you can add to modulen, they have chocolate and banana and stuff, don't know if it's from the same brand, but the hopsital here gives ppl flavors to add to it

just ask Nestlé, they know them


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## SupportiveMom

I will look into that when she actually tries Modulen again without the NG or G tube. If its going to her stomach directly I doubt she will taste it and don't want to waste that if she doesn't get the benefit.


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## Farmwife

I must of missed it, is she getting a g-tube?


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## SupportiveMom

Doc is preparing us for both. Trying NG tube first. But due to her vomiting already there is a possibility she won't tolerate the NG tube and would have to go g tube. I'm told if it is a g tube its temporary and easy to have removed.


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## girlscout

crohnsinct said:


> Here in the states it depends on your insurance as well.  O's EEN was Boost and Ensure and it was all covered.  She drank it.  The company delivered cases of it at a time.



Hi, I'm inquiring about other experiences with using Boost Ensure (drinking it).  Our GI has suggested this option because prednisone is ineffective for my Son and we don't want to use Remicade.  Has it been effective? How quickly?  It goes against my "SCD" sugar is bad perspective but I'm trying to be open minded.

My Son's first diagnosis was when he was 10.  He was treated  with prednisone, budesonide and 6MP.  After 1 year we started the SCD.  He went into full remission.  After 2 years on SCD and being symptom free, he returned to a "normal" diet.  After 1 year Crohn's returned.  At 14 now, he's been on prednisone for 6 weeks along with SCD.  We are not surprised that the steriod is not working.  Also, I know he's cheating on SCD, plus I could not convince him to do the intro diet long enough and was worried about him getting enough calories to support him while he's running cross country in high school, so I probably introduced complex foods too quickly.  

Son says he'd rather do ensure/boost route than SCD.


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## my little penguin

EEN can induce remission when done as formula only no food 
That said however - most lose remisson once more than 10-20% of the daily calories are returned to solid food.
I understand being hesitant on remicade but undertreated crohn's can be dangerous and deadly. So you need something .
EEN is not a long term solution especially given your child's age and growth potential .
It tends to be done for only 6-8 weeks. While waiting for maintence meds to kick in.
It can be added as supplemental to push things over when a med isn't enough by itself.
Or added just to ensure nutrition and growth take place .
DS started on EEN for 9 weeks with 6-mp
It wasn't enough to induce remission

You could try Mtx before remicade 
It works for some as a monotherapy
It didn't work for my son.
He eventually needed remicade.

I wish I could say it was easy but it wasn't.
Also EEN has a much lower response rate at inducing remission after disease has been present for a while and other drugs have been needed.

Good luck


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## girlscout

Hi My Little Penguin,

I'm not sure about your abbreviation does Mtx==Methotrexate?   GI said we'd have to use Methotrexate along with the Remicade.   I assume you are suggesting that we switch to Methotrexate now, try the EN, and then go to Remicadee if all else fails?

THX again


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## my little penguin

Mtx is methotrexate 
So Mtx by itself 
However you may want to ask the Gi why he was recommending remicade
What the disease severity is and where it was active now .
He is recommending remicade for a reason.
You need to understand the pros and cons 

Most recommend Mtx with remicade to reduce the production of antibodies .
However studies show mixed results as to whether that really stops antibody.
DS did remicade alone
But had two allergic reactions by the 7th and 8th infusion
He did not have antibodies but tends to be a very allergic kid 
Anaphylaxis to foods bees etc....
He then switched to humira.

Biologics by far although scary have had the least side effects for my kiddo
I wish we had tried them sooner.
I will tag a few members who also are on biologics
Tesscom
Clash
Jmrogers
Farmwife
Mehita
Araceli
Crohnsinct
Brian'smom

All will tell you the same


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## Clash

My son was on remicade and mtx. We dropped remicade before surgery and have now added it back. He has had no side effects from either med but both were not enough to control the inflammation. Hopefully now it will be.


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## Mehita

Remicade only here with no side effects and it's been DS's wonder drug!


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## Farmwife

My DD did EEN as a solo therapy but wasn't enough to help. 
She is now on Remicade and MTX with no side effects yet.


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## Jmrogers4

Remicade only here but we did use methotrexate as a mono therapy with good results as far as disease control unfortunately my son was one of the extremely rare few who have lung issues while on it so we had to discontinue also the reason we are doing remicade as a mono therapy but it is working well for him.  
We did EEN about a year ago in place of prednisone to try and get a flare under control, symptoms subsided but his fecal calprotectin numbers went up which is one of our few markers that actually tell us what is happening.
We tried the SCD for what's it's worth, it was too hard for him to stick to and he just didn't get enough calories from what he actually would eat and we already had major growth and weight issues.  For us any diet that he is not fully on board with isn't going to work because I'm not/can't be and don't want to be with him 24/7.  For the most part I let him have 95% say in treatment as he has to deal with the daily living with CD but I get final say currently but he knows he opinions are being heard.
We went EEN last year because he told his GI he refused to do prednisone so what were his options.  GI told him EEN but it was very hard for people to stick to and he had to be 100% committed otherwise prednisone was a better option.  Jack said he was on board with EEN and wanted to go that route.  I don't think it would have worked otherwise as we had an awful time getting him to drink the supplements when he had to for supplemental nutrition because he didn't want to.  So I think especially with a teenager who are apt to try and control whatever they can especially when things feel out of control and diet is one are they can control or cheat that unless they are 100% committed it's not going to work. Make sense?


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## Tesscorm

My son did exclusive EN for 6 weeks to induce remission and then continued with supplemental EN (1/2 dose, 5 days/wk) as his maintenance treatment for approx 2 years.  It did induce and maintain clinical remission (no outward symptoms) and reduced inflammation, however, it did not eliminate all inflammation (confirmed by MREs).  Upon his transfer to an adult GI, his new GI was adamant that the simmering inflammation would lead to permanent damage and complications and strongly recommended remicade.  We followed his advice and he has been on remicade for almost two years.

He's had no problems with remicade.  We did tighten his schedule (from every 8 weeks to every 6) but this was because testing showed no remicade left in his system at 8 weeks.  He goes to his infusions, usually sleeps or takes his laptop and just relaxes.  He feels fine after his infusion and has sometimes gone directly to see friends or even to the gym right afterward.  

Some do feel fatigued after the infusion but that may also be related to premedication with benedryl (as per some GIs preference).

An MRE done after being on remicade for a few months showed significant inflammation improvement and even narrowing that had previously be apparent, was no longer seen.

A friend who's daughter (approx. 13 years old) also has crohns, is being treated with remicade and mtx.  She does feel a bit fatigued after her infusion but is otherwise fine.  And remicade has been a huge improvement for her as well!

:ghug:


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## araceli

We started Remicade 2 years ago due to anal fissures. My daughter was symptom free for one year but Crohn's was working it self from terminal ileum to other parts. She did not have any symptoms so we thought the other meds were working,  she is on remicade every 8 weeks by itself and no side effects at all. To us it has been the miracle drug, it was very hard to decide on it but now I hope she can stay on it for long time. Whatever meds you choose I wish you the best outcome.


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## crohnsinct

Hi there!  Another IV Leaguer here.  

The way our doc describes EEN, SCD, FODMAP etc is that they are nutritional therapies and can work BUT only when done 100%.  When you come off it is just a matter of time before disease creeps back in.  That time differs for each person.  At our last appointment, he did say there is encouraging research coming from Isreal with diet (very similar to FODMAP) and also that there are some clinics here in the US who are using a period of EEN, then regular diet then back to EEN.  While these are all encouraging he isn't quite ready to use these protocols on patients with active inflammation.  Perhaps he will be starting with patients in deep remission for over a year and see how it goes.  

My daughter went straight to Remicade as she was very sick and we didn't have time to play around.  Remi only worked while she was on steroids as well.  Every time we tapered disease kicked back up.  Doc wanted to add Mtx to the Remi.  We declined Mtx and added did EEN for 6-8 weeks and it got her to remission.  She does great on the Remi and has been on it for almost 3 years with only Remicade induced psoriasis as a side effect.  We eventually added Mtx but that was for psoriasis. 

If the doctor feels you have time to give EEN a try, I would try that but you do have to prepare yourself for what you are going to do to keep him in remission.  The thing about cycling on and off EEN is you have to be careful about disease kicking in and then subsequent healing and the building up of scar tissue.  You really want to get to remission and stay there as much as possible.


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## girlscout

Hi everyone,  

Here's an update on my 14 yo son who started EEN Boost about 4 weeks ago.  He had blood work done on Tuesday and his CRP is down to 1.1 mg/dl (from 5.6mg/dl)!  Tomorrow I'll be talking to his GI to find out what the next steps are.  He was scheduled to begin Remicade on 12/2.  I'm just not sure what his GI will say about that. I'm hopeful we can put it off a bit longer but I'm trying not to get my hopes up.  

 He is also on 20 mg pred.  We D/C'd 6mp on the day before the blood draw at his GI's recomendation in preparation to moving to MTX once he's on Remicade.


Son 14 yo CD since 2010.  Pred, only at the moment. Previously 6mp.


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## Pilgrim

That's good news. I hope the improvements continue!


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## my little penguin

Make sure you discuss the length of time of EEN with the Gi .
It tends to work like pred in that it lowers the inflammatory numbers but generally can't be used long term since once you start food  the inflammation starts to come back .
So you will need to discuss a long term med with the Gi if you don't intend to do remicade .

Also before you sign your kiddo up for EEN only for life - try it yourself for a week .
Being a teenager who doesn't get to eat is doable short term but longer term can be extremely hard.


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## josiemk

Thank you for sharing! My nephew (15) just finished his exclusive nutritional therapy and is now being reintroduced to solids. He took labs yesterday after 101 days of exclusive therapy and we are awaiting results. His physician says the true test is how he responds to food after. We were given a list of foods to get him back on solids but they are full of preservatives and are difficult to digest. There is a recommendation to stay away from foods high in fiber. My older niece has a similar recommendation because she has tiny intestines and they want to prevent blockage, but you nephew doesn't have this concern so I am unsure of why this is the recommendations. My nephew is an unusual kid in the sense that he has always been health conscious and doesn't like unhealthy football so we have been trying to modify the list in a way that makes sense. Right now he has been sipping on organic apple juice and I was going to make him vegetable soup, thinking the boiling will get rid of the fiber. My concern is he will not get enough calories. Any advice? 
Josie


ben's rn said:


> 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 Imuran 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


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## Tesscorm

Fibre is more difficult to digest and cause some people to have difficulties.  I know when my son reintroduced foods, it started with 'white' foods - breads, pasta, rice, cereal, etc. and then we added proteins.  Dairy, fruits/veggies after (can't remember which came first).  My son was to reintroduce each food types over the course of 3-5 days.

FWIW, I did post my son's reintro diet - I think either here or on the Kids on En thread.

But, from what I know now, my son's reintro was quite quick.  There are others who reintroduce foods at a much slower pace.  And, reintroduce foods one or two at a time, rather than an entire food group at once.

Is he doing any supplemental EN?  After my son completed his six weeks of exclusive EN, he continued with supplemental EN at 1/2 dose (1500 cal/day) for the next two years, in addition to his regular diet.  He ingested his EN formula overnight thru NG tube, so this helped in that it didn't interfere with his daytime diet (ie wasn't too full from drinking a shake to eat his lunch...).  But, even if your nephew can't get in 1500 cal/day, even some supplementation will help ensure he is getting all his nutrients.

As far as 'low fibre' fruits/veggies - I know cooking, ie soup, helps to make them easier to digest and I've also read of lots of members juicing to get their fruits/veggies.  Also, when we were reintroducing fruits/veg, we were told to avoid seeds, skins and membranes (ie skin around orange segments).


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## my little penguin

You can't go straight to food
You add food slowly while still drinking formula to make up the difference in calories
Healthy doesn't necessarily mean it's good for a crohns gut
Even in remission it's still not functioning at 100%

Cooked veggies still have fiber 
Juiced veggies with pulp removed do not
Plain rice 
Boiled chicken
Potatoes mashed

Anything that can be mashed with a fork first 
Then more solids 
Takes a few weeks 
Get back unhealthy food first ( easy on the gut food )
It's not for life just a few weeks 
Then try out which veggies he tolerates

Potato soup with zucchini purée is a favorite at my house 
Hugs


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## bethhall3434

Both my daughter (8 yr old twins) are doing enteral therapy and it has really helped with growth.  With one it isn't helping her inflammation like we had hoped, but for growth, and energy it is awesome.  One daughter was diagnosed earlier and had the NG tube for 6 months, she now has had a G tube for over a year.  Her twin sister was just diagnosed a month ago and has her NG tube.  It's not ideal, the G tube is so much easier (and not visible).  We are hoping she healthy enough to get s g tube placement in Sept.  it's nice to talk to another parent who goes through what our family does.  [emoji4]


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## richard1353

I read these all！ Thanks everyone！


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## richard1353

Do you try the SCD diet on your child？I know you have made a great contribution to this forum. I know some succeed example for SCD diet. My child has EN for 8weeks and I want to have half EN and SCD diet after he will be in remission. Of course I will take the meds under the doctor's guidance at the same time. Thank you very much！


my little penguin said:


> You can't go straight to food
> You add food slowly while still drinking formula to make up the difference in calories
> Healthy doesn't necessarily mean it's good for a crohns gut
> Even in remission it's still not functioning at 100%
> 
> Cooked veggies still have fiber
> Juiced veggies with pulp removed do not
> Plain rice
> Boiled chicken
> Potatoes mashed
> 
> Anything that can be mashed with a fork first
> Then more solids
> Takes a few weeks
> Get back unhealthy food first ( easy on the gut food )
> It's not for life just a few weeks
> Then try out which veggies he tolerates
> 
> Potato soup with zucchini purée is a favorite at my house
> Hugs


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## richard1353

There are many guidance suggestions for this topic！


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## Maya142

If you make a new thread about diet, you are likely to get more suggestions for your kiddo. 

There are a couple parents who have had success with diet alone - I'll tag Optimistic here  because her kiddo has done GREAT on the SCD.

There are also some parents who have used the IBD AID diet.


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## Optimistic

Hi Richard. Do make a good post because you will get lots of insight from more recent posters. My son got into remission with steroids and EEN. He then moved skowly from about 80\20 EN and scd 20/80ish EB AND SCD. It is a delicate house of cards but still to be working. Another MRE soon to be sure.


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## richard1353

Thanks a  lot! I learn and study the Crohn's disease , SCD diet and so on, because I havn't known this name before one month ago. When my child finish his EN after 8 weeks(two months), I will have new post to ask your suggestions for the medicinal and diet plans. I appreciate your warmly responses, whether it is for the past , at now and in the future! THANKS AGAIN!


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