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08-17-2013, 08:26 PM   #31
Mark in Seattle
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Join Date: Nov 2010
Location: Issaquah, Washington

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Hi Joshua, I feel that the Modulen has been my biggest help. I feel that the Modulen has helped me with 3 things:

1. Crohn's. For the first time in 2 years I am tapering my prednisone and may even be able to stop it completely within a few months.
2. As I mentioned in my above post, I have not been able to consume coffee for about 10 years, but now am able to drink it every day, which is an absolute miracle. I can't even begin to explain how incredible this development is for me. I truly believed I would never be able to drink black coffee again in my life.
3. I have also had some sort of odd allergy to down products and even to faux-down products, also for 10 years, which developed out of the blue and it's even more odd because my allergist tested me for down and then told me that I was not allergic to down (yet I couldn't get even within 2 feet of it). I removed all such products from my home 10 years ago, after having used them for 10+ years without issue. I tried a down pillow a couple years ago and found I was still unable to come within 2 feet of it without plugging up my nose for several hours. Recently however, I have been able to reintroduce the down pillow and although it sometimes makes me sneeze, it doesn't cause the congestion like it used to.

All 3 of these enormous developments for me occurred about 3 weeks after seriously committing to the Modulen. I made this serious committment because I felt that every other option had completely failed me:
*prednisone
*Humira
*my recent surgery #3

I'm left with the impression that these afflictions I've suffered, and the incredible improvement which occurred so quickly (~3 weeks) after consuming the Modulen, signify that my body was deficient in some sort of building blocks which aid cellular repair and/or rebuilding. I wish I underestood how this stuff works for me. I can speculate that it somehow provides certain amino acids or whatever nutrients that were previously lacking. I've read that there is whey and casein in Modulen. It makes me wonder if I can find some cheaper product on some store shelf with whey or casein which might work just as well. I've read about bodybuilders using some whey products; I'd like to try one because Modulen is extremely expensive and is a pain in the butt to go to Canada and bring it back across the border.

I do get some gut pain every time that I step down by 1mg in my prednisone tapering regimen, but I stick with it and the pain seems to diminish within about 1 week or so, which is completely different from before, when I couldn't get below 9mg for even one full day.

I'm eating foods that I haven't dared eat in more than a decade, such as onions for example. I had forgotten how wonderful an onion tastes. I've eaten so much in fact that I am now overweight and weigh more than I ever have, so I am now focused on reigning in my excess consumption and trying to do some exercise. I feel really rotten about my weight and poor condition, but otherwise I feel much improvement.

Wishing you well. Regards!!
12-02-2014, 08:33 AM   #32
lubnaexperts
 
Join Date: Dec 2014

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my son diagnosed with crohn's on sept 2014 he is taking pentasa and ento cort 9 mg till now and we introduce imuran 50 mg since 35 days now and his test of calprotectin is over 1000 so the doctor decided to start with him eternal diet and we started modulen IBD formula since 4 days and stop all the foods. today my son inform me that he had soft faeces fro the first time . anyone have any idea am afraid that he will have diarrhoea again
12-02-2014, 08:42 AM   #33
Clash
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Welcome to the forum! It can be fairly common for EEN with a formula to cause softer bms. For others, it can cause constipation. One of the parents described it as liquid in liquid out. It wasn't that way for my son but he wasn't on 100% EN.

I will tag some parents that have had experience with EEN

Maya142, jmrogers4, pilgrim, farmwife and Tesscorm
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
12-02-2014, 09:10 AM   #34
lubnaexperts
 
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thank you clash for your reply and fast answer
12-02-2014, 09:29 AM   #35
Farmwife
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Hi lubaexperts, My Grace had the problem of constipation. Many have said it was liquid for them. If it becomes an issue the GI will be able to offer advice on how to slow down and firm up his BM's.
I hope it works wonders for him.
__________________
I'm mom to............... Little Farm Girl 8 yr old
Ibd (microscopic)
(12/28/12),
dx Juvenile Arthritis
(12/13/13)
dx Erthema Nodosum
(8/13/14)
Bladder and Bowel Dysfunction
(10/14/13)
Ehlers-Danlos Syndrome dx (1/26/17)
Remicade started on (9/8/14)Every 4 wks
Azathroprine started on 10/9/15
EN/EEN- since (1/12/13)
Past Meds- LDN, Humira, Pred, MTX, Sulfasalazine
12-02-2014, 10:22 AM   #36
Jmrogers4
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Yes we had extremely soft or liquid on EEN, but it was different then Crohn's symptom diarrhea he says. There wasn't necessarily the urgency you get just when he had to go it wasn't solid most of the time he described it more as fluffy as opposed to straight liquid. He averaged 1-2 a day. There was no pain and we used the wet wipe TP.
GI wasn't concerned as it wasn't an all day/many times a day issue so he wasn't worried about dehydration.
__________________
Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
12-02-2014, 11:09 AM   #37
Tesscorm
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Location: Ontario

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Yes, my son was the same as above. While he was on exclusive EN he had 'diarrhea' but no pain, no urgency, and only a couple times per day... and it was our hospital's dietitien who'd advised that this isn't unusual, ie liquid in, liquid out. My son's was also very light coloured, again, likely affected by colour of the formula??

But, there's certainly no harm in letting your GI know... especially if your son begins to have new symptoms like pain, blood or mucous.
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Tess, mom to S, 22
Diagnosed May 2011

Treatment:
May-July 2011 - 6 wks Exclusive EN via NG tube - 2000 ml/night, 1 wk IV Flagyl
July 2011-July 2013 - Supplemental EN via NG, 1000 ml/night, 5 nites/wk, Nexium, 40 mg
Feb. 2013-present - Remicade, 5 mg/kg every 6 wks
Supplements: 1-2 Boost shakes, D3 - 2000 IUs, Krill Oil
12-02-2014, 11:46 AM   #38
lubnaexperts
 
Join Date: Dec 2014

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thank you Farmwife,Jmrogers4 and Tesscorm for these valuable information

its really helpful
12-02-2014, 12:39 PM   #39
sue2003
I used modulen for nearly 29 months. Soft stool ( and some cramps ) was the usual till I diluted the formula. Just put less numbers of scoops on the same amount of water. Hope this will help.
12-02-2014, 02:05 PM   #40
Clash
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I would check with the GI before changing up the formula, if less scoops means less calorie intake it could affect weight gain/growth in a child on EEN couldn't it? I would at least make you you are adding more formula intakes(if by mouth) or adjusting time or rate if by ng tube and pump.

I'm not certain about how modulen works as we were on another type that was pre packaged liquid so we knew by the number of cans the calorie intake for the day.
12-02-2014, 02:12 PM   #41
Maya142
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My daughter had a lot of diarrhea when we first started EN. We eventually switched formulas, from Peptamen Jr to Neocate and that made a big difference. She does still have loose/liquid stools, particularly in the morning (since she runs her feed at night - she has an NG tube) but it's 2 or 3 a day, not 7-8 or even more, like it was with Peptamen Jr.
__________________
Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
12-02-2014, 03:17 PM   #42
Pilgrim
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Location: Ontario

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My daughter is on her second 6 week treatment of 100% enteral nutrition. We are using Ensure. For the first few weeks typically 1/2 formed and 1/2 liquid stools. Then around week three we see some good formed regular stools.

We work with a dietitian. She is great. She calculates how many calories we need her to have every day and also how much added fluids (just water for us) to prevent constipation.
I would be patient and give it some time, but of course always contact the GI if you are worried.

For us, the enteral nutrition helps immensely. Unfortunately, whenever our daughter goes back on food, her symptoms return.

I hope you can find something that works.
__________________
Mom to daughter,age 5, diagnosed at age 3 with Crohn's Disease
Current Treatment: Humira (started 12/2014) moved to weekly injections (07/2015), Back to 50% EN orally. Zinc supplements. Calprotectin through the roof.
Previous Treatment: Azathioprine (discontiued 09/14 due to Pancreatitis) Flagyl, Sulfasalazine, EEN, Iron,Vit D, Zinc, SCD
12-02-2014, 05:12 PM   #43
sue2003
I didnt mean that the total number of scoops should be reduced, you can simply add more water to the same number of scoops. Just dilute the formula, this is what worked for me at least.
12-02-2014, 06:03 PM   #44
Clash
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I'm sorry sue2003, the wording you used, "less numbers of scoops to the same amount of water" made me think you were reducing the amount of calories.
12-03-2014, 03:53 AM   #45
SarahD
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Location: Cambridge, United Kingdom
D was never one of my Crohn's symptoms but on EN I would be going up to 10 times a day and the stool would be liquid and sometime green in colour. My dietitian said that was normal for some people and not to worry.
__________________
Symptoms from the age of 12. Mis-diagnosed with UC at the age of 13, and later diagnosed with Crohn's in January 2012 at 24 years old. Disease mainly in terminal ileum.


Current meds:
Azathioprine, Allopurinol, Calcichew D3-Forte, Fortijuice, Alendronic acid, Ranitidine

Previous meds:
Augmentin, Doxycycline, Lansoprazole, Asacol, Pentasa, Prednisolone, Entocort, Cipro, Flagyl, Elemental Extra 028
12-03-2014, 04:05 AM   #46
lubnaexperts
 
Join Date: Dec 2014

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thanks for all of you . he started today 100 % modulen powder without any food and he went till now once to the bath and it was diarrhea I will see what will happened with him
12-03-2014, 08:44 AM   #47
ncman
 
Join Date: Sep 2014
Location: United Kingdom

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My daughter is on her second 6 week treatment of 100% enteral nutrition. We are using Ensure. For the first few weeks typically 1/2 formed and 1/2 liquid stools. Then around week three we see some good formed regular stools.

We work with a dietitian. She is great. She calculates how many calories we need her to have every day and also how much added fluids (just water for us) to prevent constipation.
I would be patient and give it some time, but of course always contact the GI if you are worried.

For us, the enteral nutrition helps immensely. Unfortunately, whenever our daughter goes back on food, her symptoms return.

I hope you can find something that works.
Hi,

I just wondered what people's expereinces are of food reintroduction?

Has anyone ever done a gradual reintroduction of foods like that in the LOFFLEX diet?

I've come off EEN for the second time now, and am trying to reintroduce foods again!

The D and tenesmus increased for me on EEN too - it's because the molecules are broken down, so it'll draw water into the bowel.
12-03-2014, 01:02 PM   #48
lubnaexperts
 
Join Date: Dec 2014

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hi , I want to ask my son after start modulen I told him to brush his teeth after each time he drink modulen as he complain from strange smell but when he go to school what kind of thing he can do instead of brushing his teeth at least at school ?
12-03-2014, 01:08 PM   #49
Jmrogers4
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Make sure he rinses, swishes his mouth with water after drinking. We were told this by dentist as the sugars in the drink stick to the teeth.
12-03-2014, 01:15 PM   #50
lubnaexperts
 
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thank you , but at school can he use anything like chewing gum?
12-03-2014, 02:00 PM   #51
Jmrogers4
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As long as his school allows it, My son was allowed to chew sugar free gum. I talked to the school and they allowed it while he was on EEN. Check with the GI if it is allowed.
12-05-2014, 10:12 AM   #52
Pilgrim
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Join Date: Jul 2014
Location: Ontario

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Hi,

I just wondered what people's expereinces are of food reintroduction?

Has anyone ever done a gradual reintroduction of foods like that in the LOFFLEX diet?

I've come off EEN for the second time now, and am trying to reintroduce foods again!

The D and tenesmus increased for me on EEN too - it's because the molecules are broken down, so it'll draw water into the bowel.
You might want to start a whole new thread asking this question, as it would be interesting to read the responses.
12-06-2014, 10:57 AM   #53
lubnaexperts
 
Join Date: Dec 2014

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hi all
my son has diarrhea first day twice then next day normal but very small amount and today he did it normal but he told me when he washed the area with water there is a burning sensation and before that he was itching this area any idea am worried . I tool an appointment with the doctor tomorrow evening . his crohn's diagnosed in the terminal ileum and very few in the colon
12-06-2014, 11:49 AM   #54
Clash
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He could have a small fissure or it good just be aggravation from bms. Have the GI take a look but it doesn't seem to be something that can't wait until then. If he starts to run fever or exhibit new symptoms then a call in to GI wouldn't hurt.
12-06-2014, 12:03 PM   #55
lubnaexperts
 
Join Date: Dec 2014

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thank you clash for you help i was so worried about him we still new in this way and am personally so much worried as he is my only son
12-08-2014, 10:38 AM   #56
lubnaexperts
 
Join Date: Dec 2014

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hi please am in 6th day of modulen use for my son 17yrs old
he is always hungry and became upset he is taking 2000 calories and today I rasised it to 2500 Kcal and he is still hungry I dont know what to do I dont want him to quit I want him to continue until he become better please any advise it may help him and help me
12-08-2014, 01:55 PM   #57
Clash
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My son, at seventeen was on 2700 calories a day and he was exclusive EN. If he is active he will need more calories. The nutritionist, GI nurse or Doc should have the number of calories calculated by age weight and activity. You might put a call into the GI.

Lastly, is he hungry or just feeling the need to chew? Some GIs allow sugar free gum or hard candy as well as broth or jello to help with the need to "eat" since it is all formula fed.
12-08-2014, 08:40 PM   #58
lubnaexperts
 
Join Date: Dec 2014

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hi clash thank you for answering me always, He is telling he is hungry and when I told his doctor he raise it to 2500 Kcal because my son going school and gym and told him its not to increase more not to put load in liver and kidney
so Really dont know whtat to do he became very nervous and disappointed
12-08-2014, 10:16 PM   #59
Clash
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Hmm...I'm going to tag some members that have some experience with their kids on EEN as they may have more info, my little penguin Tesscorm maya142

How much does your son weigh? How long has the EEN been scheduled for?
12-08-2014, 10:41 PM   #60
my little penguin
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Is he spreading them out during the day ?
Ds had two breakfast
two lunch
after school snack
two dinner
one bedtime snack

Not sure on the liver thing unless they are high protein.
I know my older chikd drinks supplement nutrition that is for adults with 16g of protein each
Gi said its only an issue for tiny kids (ie 3 year olds)

Also he may need to chew
Ds had gum
Shaved ice with a sprinkle of pure cane sugar
Sugar "cookies" - pure sugar boiled with water poured into silicon molds
Those were only once in a while though
Chewing is a big part of hunger
Let me see what I can find on liver stuff
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