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Crohn's Disease Forum » Your Story » Exclusive Enteral nutrition taken orally and weaning off meds


03-01-2012, 08:19 AM   #1
Catasmom
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Exclusive Enteral nutrition taken orally and weaning off meds

Hello!
I am the Mom of a 14 year old diagnosed with Crohn's in 2008. Her name is Catalina (Cata) We've been through all the protocol except Remicade, Humira and other biologicals. Thanks to a book I picked from the public library I learnt about enteral nutrition.

In 2009 during a bad flare, on 6MP, PREDNISONE And Asacol, nothing was working. Thanks to the book and a flexible GI, we tried Exclusive Enteral Nutrition orally (no tube) for 6 weeks. It only took a few days to show results. To think my daughter could have avoided the meds if only someone had mentioned it to me.
We enjoyed remission for almost three years. Thanks to routine lab work we realized this month that Crohn's was active again. Cata is on Exclusive enteral nutrition once more, and only 7 days after starting her labs show positive results in every parameter we are following. she still has about a month to go.

Enteral Nutrition has become the safe place where we can turn. It is the first line of treatment for pediatric IBD in countries such as Italy, Japan and Great Britain.
http://bspghan.org.uk/working_groups...elines_000.pdf
This treatment works for a great percentage of adults too.
It was explianed to me that it is not suggested in the US becuase it is hard to do.

If you would like more info, just let me know. The book That started us on the path is Beat Crohn's! Getting to Remission with Enteral Nutrition by Margaret Oppenheimer.
:thumrig ht:
03-01-2012, 09:43 AM   #2
SarahAnne
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Welcome! So glad your daughter is doing better with the EN, it definitely helped me get healthy enough to have surgery last year.

More doctors in the US are suggesting it now I think, maybe not for long term, but in shorter stints to help rest the bowel so that other meds can start to work. I was on EN the first time for 3 months when I was first diagnosed at 19, way back in 1996.

Good luck to you and your daughter, hope she continues to improve!
__________________
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
03-01-2012, 11:48 AM   #3
SnowDay
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That's great, catasmom. Hope Cata continues her progress. Good luck.
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Dx'd w Leaky Gut Syndrome in 08. Had eczema(autoimmune), chronic fatigue, asthma and suspected crohns(booked for an endoscopy).

Been on cyclosporine, currently on vit d3, zinc, probiotic, digestive enzymes, getting iv drips of vit C, B complex, folic acid, niacin and EDTA twice weekly and living on an all poultry diet. WANT CARBS
03-01-2012, 12:25 PM   #4
Tesscorm
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That's great! My son, 17, has also been treated through EN! While he still has some lingering inflammation, all his other symptoms are gone!
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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
03-01-2012, 01:31 PM   #5
Angrybird
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Hello and welcome to the forum It is really good to hear that the EN is doing a good job for your daughter! Just to check is this the only treatment she now has or does she still have a med she has to take?
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Angrybird

DX: Crohns July 2002
Surgery: Ileocecal Resection Sept 2011
Now:Tummy behaving itself and new mummy to baby Nicholas
Current Meds: 6-MP 75mg,B12 injections every 3 months
Previous Meds: Budesonide, Prednisone, Remicade, Pentesa,Hydroxychlorequine,Azathioprine (tried twice) and Methotrexate
03-01-2012, 03:13 PM   #6
DustyKat
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Hi Catasmom and

It is so wonderful to hear that your daughter has had such a great response to EN! YAY! I hope it continues to be this way for a very long time.

We have an Enteral Nutrition forum...http://www.crohnsforum.com/forumdisplay.php?f=161 and Parent's Forum here that you may pop like to by and say hello. I have no doubt that your experiences will be most welcome.

Good luck and welcome aboard!

Dusty. xxx
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Mum of 2 kids with Crohn's.
03-02-2012, 06:56 AM   #7
Catasmom
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Hello and welcome to the forum It is really good to hear that the EN is doing a good job for your daughter! Just to check is this the only treatment she now has or does she still have a med she has to take?
Thanks for all the welcoming!
Cata is doing EEN plus asacol,mthst's all. And she feels wonderfully. She has more energy than usual.
She's been on 6MP AND PREDNISONE before.
The EEN is used as Treatment to induce remission in her case, and after the six weeks she tries to stick to SCD (specific carbohydrate diet) as much as possible, that has helped to keep the toxicity in her gut down. She also supplements her diet with an elemental formula for the same reason.

Thanks for the suggestions about the othr threads, I'll check those out!

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