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02-05-2014, 09:01 PM   #31
Maya142
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My daughter got used to drinking Peptamen. She still says they taste bad but she's so used to having two a day that she says she misses them if she forgets! Her GI insisted which I think helped convince her -she's also usually a very stubborn teenager.
Tesscorm - it might be worth trying to convince him to give Peptamen a try, say for a month. Maybe, like M, after a month he'll be so used to them he won't notice the taste?
I will say we used bribery when she first started drinking them
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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
02-05-2014, 09:16 PM   #32
Tesscorm
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I'll see if I can find some Peptamin in the drugstores up here... I don't remember ever seeing them though. You never know... lots here say they don't like the taste of Boost and yet S has absolutely no problem with them??? (Problem with bribery now is that I don't see him! He's away at school... )

Also going to try the Vega-all-in-One, there's a GNC across the street from my work... going to check if they have those shakes there.
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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
02-05-2014, 09:19 PM   #33
my little penguin
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Peptamen typically needs to be shipped direct from the manufacturer ( nestle store )
Or through a durable medical equipment supplier .
It is a medical food so not sold in regular stores at least in the us .
You don't need a script for it in the us.
Good luck
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DS - -Crohn's -Stelara -mtx-IVIG
02-05-2014, 10:43 PM   #34
crohnsinct
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I agree with MLP...if he is symptom free and doing well and it is just for added nutrition and such any supplemental shake should do. Have you looked in Whole Foods? I know they have a couple of lines and perhaps those are C free. What about Ovaltine or Carnation Instant Breakfast? Not exactly EEN formulas so not sure about them increasing the lifeline of Remicade but they are along the same lines.
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Daughter O dx 2/1/12 at age 12
Crohns & Remicade induced Psoriasis
Remicade
Vit d 2000IU
Multi vitamin plus iron
Calcium

Previously used - Prednisone, Prevacid, Enteral Nutrition, Methotrexate oral and injections, Folic Acid, Probiotics, Cortofoam

Daughter T dx 1/2/15 at age 11
Vitaligo, Precoscious puberty & Crohn's
Remicade
Vit D 2000IU

Previously used, Exclusive Enteral Nutrition, Methotrexate (injections and oral), Folic Acid, Entocort,IBD-AID Diet
02-05-2014, 11:03 PM   #35
Tesscorm
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I agree that a polymeric formula shud be fine. But I do want one that has equivalent (or close to) the same levels of vitamins/minerals that boost or ensure have.

Just reAlized MLP mentioned the vegan... 'Powder' - going to see if they hv actual shakes. Annoying that they add this to their shakes!!! Will check the carnation shakes too.

Last edited by Tesscorm; 02-05-2014 at 11:23 PM.
02-05-2014, 11:32 PM   #36
Catherine
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Carrageenan is added to stop the liquid and solids from separating.

This is why the powders are more likely to be carrageenan free.
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Catherine
Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
02-06-2014, 01:10 AM   #37
Twiggy930
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Modulen is carrageenan free. It is not completely broken down so it doesn't taste too bad.
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Son (age 13) diagnosed with Crohn's Feb. 2012.
Currently on Imuran and Sulfasalazine.

Also taking: TuZen probiotic and following a low FODMAP diet (not very strictly).

Past Treatments: Prednisone, Flagyl, Cipro, Pentasa, exclusive EN via NG tube (6 weeks), Prevacid, Iberogast (20 drops twice a day) and high doses of vitamin B2.
05-13-2014, 10:44 AM   #38
ben's rn
 
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I am wondering if anyone has used a tube feeding formula or supplement for years only to learn it has carrageenan in it. I think it may have contributed to my son needing a small bowel resection.
05-13-2014, 11:31 AM   #39
Farmwife
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Grace's formula (E028 Splash) doesn't have it but her coconut and almond milk did.
She used to drink lots of that before her dx.

Now she drinks rice milk. At least with that I just have to worry about arsenic.

But I don't believe that's the cause of her Ibd.
For me I blame the flu and c diff for triggering it.
She was never the same again.
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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
05-13-2014, 11:44 AM   #40
Tesscorm
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My sons formula came as a powder so I don't think it had carrageenan?? I don't know a lot abt this but I hv read that there is some debate over 'safe' levels of carrageenan?? Although thr r studies/reports indicating the harm carrageenan can do, I believe I e read that, at least some of the reports may hv been based on levels that wud not normally be ingested. But, as I said, I certainly don't know enough abt it to really know. . I do know it seemed almost impossible to avoid and my thought is that my son gains more benefits from drinking boost shakes than the harm he wud get from the carrageenan. But wud certainly be interested to hear what others think.
05-13-2014, 01:31 PM   #41
ben's rn
 
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I do not blame carrageenan for his Crohn's - but for increasing inflammation and causing ulceration and damage in his small intestine. It is a known inflammatory agent that causes ulcers in lab animals. He was on tube feeds for about 3 years so daily dose of several cans of formula that had carrageenan.
05-13-2014, 02:09 PM   #42
Tesscorm
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I wish I knew more re 'how much is too much'. The constant exposure wAs my concern as well. It was a while back when I looked into this but, if I remember correctly, I came to the conclusion that I wudn't be able to eliminate it so it didn't make sense to remove something that was providing a benefit. However, given S's age, I hv limited control over what he eats or drinks - when he was younger, it wudve been easier to minimize it from his diet.

However, I do worry that even an acceptable amount of something (cud be carrageenan, NSAIDs, etc) cud impact someone susceptible to crohns much more than the avg person.

(Ughh, where was this thread yesterday?, before we went to the GI - this was something else I'd meant to ask abt! )
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