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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.:hallo3:
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/documents/IBDGuidelines_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.
:thumright::thumleft::thumright::thumleft::thumright::ytongue::ytongue:
 
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!
 

Tesscorm

Moderator
Staff member
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!
 

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :bigwave: 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?
 

DustyKat

Super Moderator
Hi Catasmom and :welcome:

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
 
Hello and welcome to the forum :bigwave: 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!

:ybiggrin:
 
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