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04-07-2013, 04:20 PM   #121
imaboveitall
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Carol, foul smelling gas is sometimes bacterial overgrowth, look up SIBO.

MLP, yep, still on Remicade, infusion 4 is Apr 9. The Saint wants to add Imuran, I am balking thus far.
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VIOLET AGED 16

Current tx:
Pediasure PEPTIDE 1000 cals nightly via NG tube
Imuran 150mg
Humira


Failed and/or past tx:
Remicade
methotrexate
prednisone
Flagyl
Pentasa
atenolol
Florinef
cyproheptadine
Humira
04-07-2013, 04:25 PM   #122
my little penguin
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Personally I would add MTX before imuran if there was a choice given by the doc.

BUt that is just me-
WE no longer have a choice- moving on to humira pending the Brain MRI results ( to rule out demylination)

Glad the formula only is working again.
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DS - -Crohn's -Stelara
04-08-2013, 01:29 AM   #123
CarolinAlaska
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Glad the formula only is working again.
For your son or for someone on this thread? I hope you mean for your son...I'd like to hear something is working...
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J's story: http://apathnotchosen.blogspot.com
*J, 18, Crohn's diagnosis 1-2013 (age13), controlled with 6MP.
Osteoporosis, Scoliosis, EDS, Asthma, Lymphedema, Epilepsy, Hla B-27 positive, gluten intolerant, thrombophlebitis, c.diff, depression, anxiety postural tachycardia/POTS and multiple food allergies.
04-08-2013, 05:01 PM   #124
imaboveitall
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MLP, she's on MTX already, low dose oral weekly just for antibody prevention, not anti-inflammatory effect.
The studies he's sending me support Imuran over MTX. But I'm not going there.
04-08-2013, 05:15 PM   #125
my little penguin
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what about injections weekly of MTX since she may not be absorbing it????

Carol- Her daughter is on forumla and just switched back to EEN . It lowered her inflammatory stool markers.
My son is on formula as PEN clinically from a GI standpoint he is mostly good. BUt he get more autoimmune (EIM stuff) as a added bonus
04-08-2013, 07:22 PM   #126
LJS
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My son is starting EN on Friday. He just turned 9, is 48" and 46 lbs.. very, very small. His inflammation is in the very center of his small intestine. Has been on imuran and allopurinol for 2 years but his SED rate has not decreased (it's actually increased) and his other markers show inflammation. So, in combo with his not growing, we are trying EN. My doctor doesn't believe in EEN, believes it's too hard to get kids compliant, so DS will be able to eat anything he wants. In truth, he's such a poor eater, that just having him get 1800 calories/night will be a huge relief. He will be trained on inserting the NG tube himself, and he'll remove it daily. Biggest hurdle has been insurance, whihc has denied everything. Finally got the supplies approved EXCEPT for the Peptamen Jr. I've been able to get enough for us to do it for 8 weeks.. then we'll see... fingers crossed!
04-08-2013, 07:29 PM   #127
Farmwife
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That's the best part about Grace being on EN. I know she's getting ALL that she needs to grow and (hopefully) thrive. I hope all goes well for son.
HUGS
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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
04-09-2013, 12:48 AM   #128
CarolinAlaska
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Well, for our update, we've started Jaedyn back on foods. She's had apple juice, beef broth, sweet potatoes and white potatoes. The potatoes didn't go over very well. I'd think she'd be glad to have something solid to swallow (even if it is soft), but she didn't like the texture or that it couldn't have butter . Maybe tomorrow we'll try fish or eggs.
04-09-2013, 09:07 AM   #129
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Is anyone using PEDIASURE EN or any other Abbot Lab product for EN or supplementing?? If you are giving this to your Crohnie, PLEASE STOP. These products contain a known GI inflammatory ingredient: CARRAGEENAN which I believed has made my son VERY ill. He just had a 2 foot jejunal resection.
04-09-2013, 09:34 AM   #130
Jmrogers4
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Jack drinks the Peptide. He has a GI appt on Thursday. I'll put it on my lists of questions.
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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
04-13-2013, 01:00 PM   #131
imaboveitall
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Ben's Rn, V has used Pediasure Peptide for nearly five years.
Please expound, and cite studies to support your radical claim.
Many thanks.
04-13-2013, 01:25 PM   #132
my little penguin
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Carrageenan is a high molecular weight sulfated polygalactan used to improve the texture of commercial food products. Its use increased markedly during the last half century, although carrageenan is known to induce inflammation in rheumatological models and in intestinal models of colitis. We performed studies to determine its direct effects on human intestinal cells, including normal human intestinal epithelial cells from colonic surgeries, the normal intestinal epithelial cell line NCM460, and normal rat ileal epithelial cells. Cells were treated with high molecular weight λ-carrageenan at a concentration of 1 μg/ml for 196 h. IL-8, IL-8 promoter activity, total and nuclear NF-κB, IκBα, phospho-IκBα, and Bcl10 were assessed by immunohistochemistry, Western blot, ELISA, and cDNA microarray. Increased Bcl10, nuclear and cytoplasmic NF-κB, IL-8 promoter activation, and IL-8 secretion were detected following carrageenan exposure. Knockdown of Bcl10 by siRNA markedly reduced the increase in IL-8 that followed carrageenan exposure in the NCM460 cells. These results show, for the first time, that exposure of human intestinal epithelial cells to carrageenan triggers a distinct inflammatory pathway via activation of Bcl10 with NF-κB activation and upregulation of IL-8 secretion. Since Bcl10 contains a caspase-recruitment domain, similar to that found in NOD2/CARD15 and associated with genetic predisposition to Crohn's disease, the study findings may represent a link between genetic and environmental etiologies of inflammatory bowel disease. Because of the high use of carrageenan as a food additive in the diet, the findings may have clinical significance
From:
http://m.ajpgi.physiology.org/content/292/3/G829.full
04-13-2013, 01:35 PM   #133
my little penguin
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http://www.cornucopia.org/Cornucopia...acts042612.pdf

I haven't checked out the studies cited here for validity yet .
04-13-2013, 01:43 PM   #134
my little penguin
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http://articles.chicagotribune.com/2...itive-safety/2

Just an article debating it.
04-13-2013, 01:51 PM   #135
my little penguin
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http://meghantelpner.com/blog/ensure...an-conspiracy/
More debates
04-13-2013, 01:51 PM   #136
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imaboveitall

Here's a link to the wiki page on this forum. Press HERE

David has a lot of knowledge on this subject.


04-13-2013, 03:19 PM   #137
LJS
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Update: Son inserted his NG tube by himself, first try - woo hoo! Did great on his first feed. We didn't get to the 1000 ml, as we are stair-stepping him up... he did about 600 ml and about 900 calories. Did great, although he did throw up this morning, so tonight, I'll keep him at the same volume, just keep the pump going at 60 ml/hr for 10 hours and not starting at 20, then increasing every 2 hours by 20 ...

Question: I don't see any lubricant packs in my supplies. I'm goig to ask the home health company on monday but can I get those little packs somewhere? I read that you cannot use vaseline as it destroys the integrity of the tube.

thanks!
04-13-2013, 05:40 PM   #138
my little penguin
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Abstract
In this article I review the association between exposure to carrageenan and the occurrence of colonic ulcerations and gastrointestinal neoplasms in animal models. Although the International Agency for Research on Cancer in 1982 identified sufficient evidence for the carcinogenicity of degraded carrageenan in animals to regard it as posing a carcinogenic risk to humans, carrageenan is still used widely as a thickener, stabilizer, and texturizer in a variety of processed foods prevalent in the Western diet. I reviewed experimental data pertaining to carrageenan's effects with particular attention to the occurrence of ulcerations and neoplasms in association with exposure to carrageenan. In addition, I reviewed from established sources mechanisms for production of degraded carrageenan from undegraded or native carrageenan and data with regard to carrageenan intake. Review of these data demonstrated that exposure to undegraded as well as to degraded carrageenan was associated with the occurrence of intestinal ulcerations and neoplasms. This association may be attributed to contamination of undegraded carrageenan by components of low molecular weight, spontaneous metabolism of undegraded carrageenan by acid hydrolysis under conditions of normal digestion, or the interactions with intestinal bacteria. Although in 1972, the U.S. Food and Drug Administration considered restricting dietary carrageenan to an average molecular weight > 100,000, this resolution did not prevail, and no subsequent regulation has restricted use. Because of the acknowledged carcinogenic properties of degraded carrageenan in animal models and the cancer-promoting effects of undegraded carrageenan in experimental models, the widespread use of carrageenan in the Western diet should be reconsidered.
From:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1242073/
04-13-2013, 05:42 PM   #139
my little penguin
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http://www.ncbi.nlm.nih.gov/pmc/arti...109-000983.pdf

Full article
04-13-2013, 05:56 PM   #140
my little penguin
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http://www.sciencedirect.com/science...55286309001521
04-13-2013, 05:59 PM   #141
my little penguin
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Carageenans are a group of high molecular weight sulphated polygalactans which find extensive use in the food industry as thickening, gelling and protein‐suspending agents. Although there is no evidence to suggest that the persorption of small amounts of carageenans across the intestinal barrier poses an acute toxic hazard, they are known to be biologically active in a number of physiological systems and extended oral administration in laboratory animals has been shown to modify both in vivo and in vitro immune competence. Whereas this effect could be attributed to carrageenan having a selective toxic effect on antigen‐processing macrophages, additional studies suggest that macrophages can also influence immune responses by the timed release of immunoregulatory mediators. Evidence in support of this comes from in vitro studies which demonstrate that carrageenan‐treated macrophages can, depending on conditions and time of administration, release either stimulatory or inhibitory factors. The former is known to be the immunostimulatory agent interleukin 1 (IL‐1). The inhibitory factor, which is produced at an early stage following exposure to non‐toxic doses of carrageenans, has yet to be formally identified but it is believed to be a prostaglandin because of its specific mode of action and short biological half‐life.

At present it is impossible to relate these studies to the human situation. Although it is established that carrageenans can cross the intestinal barrier of experimental animals, there is no evidence to suggest that the limited uptake that may occur in man in any way interferes with normal immune competence. Nevertheless, increased exposure may occur in the neonate during weaning, and adults and children following allergic reactions and episodes of gastrointestinal disease. Further studies under such conditions now seem warranted in order to elucidate the possible immunological consequences which may be associated with enhanced uptake of carrageenans in vulnerable groups.

From:
http://www.tandfonline.com/doi/abs/1...52038909373801
04-13-2013, 06:02 PM   #142
my little penguin
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Rodent models are increasingly utilized to investigate management and treatment of inflammatory bowel disease and reduction in the heightened risk of colon cancer. Among various agents which induce inflammation in the colons of animals, is the degraded form of Carrageenan. Degraded Carrageenan is highly toxic and also carcinogenic. Recently, undegraded Carrageenan has been found to increase the risk of colon cancer and induce a number of cytokines and enzymes known to be involved in inflammation. Undegraded Carrageenan is non-carcinogenic and when administered in the diet of the animals induce sustained inflammation without bleeding and ulceration. Therefore, undegraded Carrageenan may serve to be a superior agent to use to induce inflammatory responses in a long term animal studies. Recent advances in MRS technology to assess cellular changes in a small tissue sample may provide a sensitive approach to investigate the presence or absence of inflammation. The main objective of the present study was to determine if 2 or 4% Carrageenan in the diet would elicit responses in the colon within a short time
From:
http://cds.ismrm.org/ismrm-2003/1324.pdf
04-13-2013, 06:06 PM   #143
my little penguin
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Multiple studies in animal models have shown that the commonly used food additive carrageenan (CGN) induces inflammation and intestinal neoplasia. We performed the first studies to determine the effects of CGN exposure on human intestinal epithelial cells (IEC) in tissue culture and tested the effect of very low concentrations (110 mg/L) of undegraded, high-molecular weight CGN. These concentrations of CGN are less than the anticipated exposure of the human colon to CGN from the average Western diet. In the human colonic epithelial cell line NCM460 and in primary human colonic epithelial cells that were exposed to CGN for 18 d, we found increased cell death, reduced cell proliferation, and cell cycle arrest compared with unexposed control cells. After 68 d of CGN exposure, the percentage of cells reentering G0-G1 significantly decreased and the percentages of cells in S and G2-M phases significantly increased. Increases in activated p53, p21, and p15 followed CGN exposure, consistent with CGN-induced cell cycle arrest. Additional data, including DNA ladder, poly ADP ribose polymerase Western blot, nuclear DNA staining, and activities of caspases 3 and 7, indicated no evidence of increased apoptosis following CGN exposure and were consistent with CGN-induced necrotic cell death. These data document for the first time, to our knowledge, marked adverse effects of low concentrations of CGN on survival of normal human IEC and suggest that CGN exposure may have a role in development of human intestinal pathology.

Carrageenan Induces Cell Cycle Arrest in Human Intestinal Epithelial Cells in Vitro13



From:
http://m.jn.nutrition.org/content/138/3/469.short
04-13-2013, 06:16 PM   #144
my little penguin
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http://libdoc.who.int/publications/2...eng.pdf#page72

Page 65 from investigation by WHO
04-13-2013, 06:23 PM   #145
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Update: Son inserted his NG tube by himself, first try - woo hoo! Did great on his first feed. We didn't get to the 1000 ml, as we are stair-stepping him up... he did about 600 ml and about 900 calories. Did great, although he did throw up this morning, so tonight, I'll keep him at the same volume, just keep the pump going at 60 ml/hr for 10 hours and not starting at 20, then increasing every 2 hours by 20 ...

Question: I don't see any lubricant packs in my supplies. I'm goig to ask the home health company on monday but can I get those little packs somewhere? I read that you cannot use vaseline as it destroys the integrity of the tube.

thanks!
So GREAT!!!!!!!!!!! I am so glad to hear that it went well. It is amazing what these kids can do!



I'm trying to remember what rate we used. And can't seem to remember. I know we started slow and increased the rate slowly.

After my son stopped using the numbing gel (only used it for about the first 5 days) he didn't use any gel when inserting the tube.

Hope it continues to go well.
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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.
04-13-2013, 09:15 PM   #146
CarolinAlaska
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Update: Son inserted his NG tube by himself, first try - woo hoo! Did great on his first feed. We didn't get to the 1000 ml, as we are stair-stepping him up... he did about 600 ml and about 900 calories. Did great, although he did throw up this morning, so tonight, I'll keep him at the same volume, just keep the pump going at 60 ml/hr for 10 hours and not starting at 20, then increasing every 2 hours by 20 ...

Question: I don't see any lubricant packs in my supplies. I'm goig to ask the home health company on monday but can I get those little packs somewhere? I read that you cannot use vaseline as it destroys the integrity of the tube.

thanks!
I think you can use K-Y, but you'll want to confirm that. You can get the lubricant also from the medical supply place that provides your pump. We got lubricant, but then didn't end up removing her tube daily like we thought we would...
04-13-2013, 09:16 PM   #147
CarolinAlaska
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Update on Jaedyn...she is done with EEN. She started with a fecal calprotectin of 632 and ended with a level of 93. I'm pretty happy with that, but would have loved to see it less than 50! She started with 70 lbs and ended after 8 weeks at 75 lbs. She had a couple of colds and the stomach flu during her course, which I think slowed down the weight gain she might have otherwise had - and was intolerant to the Ensure she drank for the first 3 weeks...
04-13-2013, 09:25 PM   #148
Twiggy930
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Update on Jaedyn...she is done with EEN. She started with a fecal calprotectin of 632 and ended with a level of 93. I'm pretty happy with that, but would have loved to see it less than 50! She started with 70 lbs and ended after 8 weeks at 75 lbs. She had a couple of colds and the stomach flu during her course, which I think slowed down the weight gain she might have otherwise had - and was intolerant to the Ensure she drank for the first 3 weeks...
Fabulous! Is she enjoying food like never before?
04-13-2013, 09:27 PM   #149
CarolinAlaska
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Fabulous! Is she enjoying food like never before?
Not as much as I thought she would. One of her biggest symptoms of her Crohn's is lack of appetite. Although she is eating, and it isn't hurting her or making her sick, she isn't loving it...
04-13-2013, 09:37 PM   #150
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My son doesn't have a huge appetite either. Coming off EEN he didn't eat huge amounts but he LOVED what he ate.
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