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Alternatives to medication


Mon, November 02, 2015 2:31 PM

I would like to know if anyone controls Their crohn's with supplements.

FPO lindad
Joined Nov 2, 2015

Sat, November 28, 2015 2:56 PM

 Reply posted for vcurrutia.

The GI doc who performed the endo/colonoscopy was of the opinion that "food doesn't matter." Due to a bad reaction to Immuran, we lost confidence and found another GI doc. In the meantime, we had done our research. The second GI doc did not bring up enteral nutrition, but was clearly excited when we did. He cannot get many patients to try this approach but closely watches the protocols at CHOP (Children's Hospital of Philly). Maybe there is  a difference in attitudes of docs at institutions vs. private practice? Anyway, there is VERY clear clinical evidence that children should, upon diagnosis, immediately stop eating and start formula until remission is achieved. We believe that combining 20% broth with 80% formula allowed our daughter to be more compliant - and we also suspect that her gut is soothed by the broth so we don't even think of it as food. 

Just to clarify, parental enteral nutrition bypasses the stomach. Since our daughter has not been hospitalized, she has not received this therapy. Instead, she drinks her formula. To achieve remission, she had to drink alot. Extra calories are needed due to compromised gut + energy needed to heal (goal of 3000 cal/day). To maintain, only needs 40% of calories as formula and this is of a total of 1800-2000 so MUCH less to drink!

We acquired our info on enteral nutrition from 2 main sources:
Book: Beat Crohn's! Getting to Remission with Enteral by Margaret A. Oppenheimer
and website of Jini Patel Thompson (she makes Absorb Plus) 

As our daughter matures, we hope that she will further restrict her diet to be completely clean (zero processed foods +  low carbs + zero grains) so she doesn't need to supplement with formula. But she is still growing and still needs some concessions so the formula is a great way to get pretty safe calories. Hope that helps!


FPO countingcarbs
Joined Nov 13, 2015

Tue, November 24, 2015 8:38 AM

 Reply posted for countingcarbs.

May I ask, is your GI doctor part of a group with experience in Partial Enteral Nutrition or did you bring it up and he/she has been willing to work with you?

FPO vcurrutia
Joined Nov 24, 2015

Fri, November 13, 2015 12:31 PM

 Reply posted for lindad.

Yes, my daughter has both a functional medicine pediatrician and GI doc who know each other. Her supplements were added in this order based on genova tests:

SUPPLEMENTS
Started probiotics @ 30 bill
Increased to 60
Increased to 112 (current brand is VSL#3 capsules)

GI Revive - takes 3 capsules in AM and 3 in PM

Omega 3  (but this is my idea not doctor)

We really wonder about Vitamin D - we have the impression she does better in summer...

Recently started iron occasionally

FORMULA
To achieve remission, started 60-80% diet of formula for a couple of months with remaining calories as Brasco Broth (from Restoring Your Digestive Health/Rubin)
To maintain, drinks 40% calories as formula. Was on rx formula Pediasure Peptide, but recently changed to Orgain. 

DIET
After remission, reintroduced foods  using an elimination diet. Identified problem foods to avoid (per John Hunter ".Inflammatory Bowel Disease: The Essential Guide to Controlling Crohn's Disease, Colitis and Other IBDs") fyi, these were citrus, tomatoes, nuts for example. So basically a paleo diet works for her +  she is ok with dairy. Prof Hunter (retired) believes that the problem foods must be determined per individual. 


*For information on why restricted diet + formula may work, see recent research:

•Partial Enteral Nutrition with a Crohn's Disease Exclusion Diet Is Effective for Induction of Remission in Children and Young Adults with Crohn's Disease - Sigall-Boneh, Rotem; Pfeffer-Gik, Tamar; Segal, Idit; More - Inflammatory Bowel Diseases. 20(8):1353-1360, August 2014.

FPO countingcarbs
Joined Nov 13, 2015

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