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11-03-2011, 10:18 PM   #61
Tesscorm
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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!
11-04-2011, 01:09 AM   #62
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Hugs to you Caitlyn and you too Mum.

Thinking of you,
Dusty. xxxxxxxx
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11-04-2011, 01:13 AM   #63
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@Tess...thanks for being here hun. Your experience and compassion is very much appreciated.



Dusty. xxx
11-04-2011, 05:43 PM   #64
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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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Crohn's Dx'ed Sept 08
Allerg Imuran Sept 08
Fail Remicade Jan 09
Methotrex Oct 09-Aug 11
Pentasa stopped - nosebleeds
EENOct 31 - Nov 28th. Too hard!
Retried Remicade Dec 11
Stopped due 2 Anaphylactic Reaction
LDN Jan 2012-June 2014 Got My daughter back!
New secondary diagnosis: Gastroporesis Dec 2013
Lost remission June 2014
Started Entyvio April 2015. Decreased to every 4 weeks October 2015. Praying for remission.
11-04-2011, 06:03 PM   #65
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PS.Also what do you think about eggs? I think meats are harsh on the stomach but I would think eggs are more gentle.
11-04-2011, 09:36 PM   #66
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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
11-04-2011, 09:39 PM   #67
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Don't knoww abt corn 'pasta'. Stephen does eat corn nachos??? Just not corn kernals.
11-05-2011, 05:54 PM   #68
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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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11-05-2011, 06:58 PM   #69
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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.
11-05-2011, 07:16 PM   #70
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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.
11-05-2011, 07:38 PM   #71
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The GIs at our hospital explained that it is often the first treatment given to children in Europe
I live in Europe and this isn't true. Out of the three hospitals I visited only one uses this and they do it very very rarely when the patient is severely underweight, and the maximum time they use it is about 3 weeks, because there is a serious shortage of room in most European hospitals. (it also happens to be the hospital that was the most behind, the other 2 are university hospitals)

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

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

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

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

Last edited by kiny; 11-05-2011 at 08:15 PM.
11-05-2011, 10:28 PM   #72
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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)
11-05-2011, 10:37 PM   #73
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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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11-05-2011, 10:48 PM   #74
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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.
11-05-2011, 10:51 PM   #75
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-is he suffering from side effects from steroids? No
steroid side effects are actually quite low, since the doses have been lowered a number of times, the clinic I go to was responsible for achieving this, they're a fraction of what they used to give to people

His fevers, D, night sweats, canker sores, weight loss, loss of appetite and fatigue disappeared almost immediately after starting EN.
That's what happens when someone starts eating again too though.

Last edited by kiny; 11-05-2011 at 11:07 PM.
11-05-2011, 11:09 PM   #76
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Kiny,
Have your read the book Beat Crohn's with EN? It explains a lot about EN and how it works. If blood tests and colonoscopy's as well as other tests show reduced inflammation and healing well then that certainly proves to me that it does work. Also steroids have tons of side effects. I don't know how you say they don't. Yes, they help with many diseases but they cause all kinds of issues even in lower doses. All these other drugs also have side effects. If I can get my daughter stable using something very safe like EN I certainly prefer that.
11-05-2011, 11:12 PM   #77
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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.
11-05-2011, 11:23 PM   #78
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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.
11-05-2011, 11:51 PM   #79
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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/Fulltex...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.
11-06-2011, 12:09 AM   #80
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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.
11-06-2011, 12:37 AM   #81
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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.
11-06-2011, 12:45 AM   #82
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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.
11-06-2011, 03:23 AM   #83
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http://journals.lww.com/jpgn/Abstrac..._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!
11-06-2011, 03:30 AM   #84
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http://journals.lww.com/jpgn/Abstrac..._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.

Last edited by kiny; 11-06-2011 at 03:49 AM.
11-06-2011, 04:00 AM   #85
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We're talking about CHILDREN and not adults. It's a vital difference. My link is about pediatric trials - double blind and extensive.
You make claims that are inaccurate, and disturbing for the posters on this thread.
11-06-2011, 04:19 AM   #86
kiny
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We're talking about CHILDREN and not adults. It's a vital difference. My link is about pediatric trials - double blind and extensive.
You make claims that are inaccurate, and disturbing for the posters on this thread.
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.

Last edited by kiny; 11-06-2011 at 04:36 AM.
11-06-2011, 04:45 AM   #87
izzi'smom
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As you can see in MANY of our siggy links, we have tried other things. My 4 year old is currently FAILING on Remicade and Orapred, so yes, I am trying EN. Do you think I care if it will "just" alleviate her pain? If it does, I am beyond thrilled, as nothing else works AT ALL. I am told her chances of having her large bowel in 4 years are pretty slim.
If your child was on steroids, you would know that there is a real risk of stunted growth and bone density loss. While I would like my daughter's disease to be under control, I also would like her to reach her full potential in terms of growth. While I am sure these decisions are hard to make if you are an adult, they are heartbreaking for those of us who have children with IBD.
Oh, and we ARE under a pediatrician's supervision using EN to treat Crohn's (not to treat malnutrition).
While I always appreciate another point of view (and also welcome posters that aren't parents as you know personally what our children are going through), I feel that you are attacking those of us that are doing nothing but desperately trying to help our kids. Any helpful information is appreciated, but please, keep it positive!
11-06-2011, 05:01 AM   #88
DustyKat
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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.
11-06-2011, 05:22 AM   #89
kiny
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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
11-06-2011, 11:55 AM   #90
happy
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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.
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Enteral Nutrition induced remission in August 2011
Maintaining remission on Full Elimination Diet
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