October 2015

[tgruhn66]

My son is 19 years old, diagnosed at 10. Currently attending community college after a year away in college. Resection in December 2012, failed almost every medication including 6MP, humira, remicade ,cimzia, stelara,entyvio, to name a few. Two weeks ago he had a lupus like reaction to a remicade infusion. Five day hospital stay. Taking prednisone right now with iron infusion every two weeks in addition to blood transfusions frequently (hemoglobin below 7) He is on a liquid diet. Here's my question, anyone else in a similar situation and if so, what were some of the foods that can be slowly reintroduced? He is allowed one cup of oats with honey and water as of yesterday. Hard to keep him focused on the big picture. Just looking for some advice and suggestions..

 

[Clash]

I'm so sorry to hear of your son's struggles. I don't have any diet advice but wanted to tag some parents that have dealt with re introduction diets. They'll probably swing by and give their experiences crohnsinct my little penguin possibly kimmidwife there are probably other as well. Also swing by the parents subforum there are lots of us in there!

By tagging them it should notify them to check this thread out.

 

[crohnsinct]

Hi there. Boy your son is really going through it eh? I am so sorry for all the trouble he is having.

By liquid diet are you referring to Exclusive Enteral Nutrition? (maybe not because he is having some oats and honey) Is he drinking his formula or using an NG Tube? For how long will he be on formula?

Both of my girls have done EEN to knock out inflammation and get then to remission. Generally speaking, enteral nutrition works best if exclusive although some centers are having success with 80/20. Typically, once food is introduced, unless there is a maintenance med, inflammation returns. Again, however, some centers are having success with up to a 50/50 plan.

My oldest went to an anti inflammatory diet after she did EEN and has done very, very well on it. She remained on Remicade but once we did the EEN and diet her health really took off so I have to assume more is at play than just Remicade. Even her GI can tell when she slacks on her diet. For her it is all bout clean foods. Limited dairy, very, very little meat (this info came from the Japan and Israel studies), little to no processed foods.

My younger daughter go to remission using EEN and we went to a similar diet but she couldn't get past the 80/20 without inflammation returning.

She is back on EEN and after this try we are going to use the IBD-AID diet that came out of UMass. The diet is similar to the SCD diet but allows more foods. This diet uses the principles or probiotic and prebiotic foods. It does not allow any grains, no lactose, no sugar, no corn and obviously no processed foods. It does allow lean meats but we will be limiting those to once a week based on the results of the Japan and Israel studies. She is 5-6 weeks EEN and then 80/20 for 8 weeks and we will take it from there. Our hope is to get her to 50/50 and that is where she will stay. She has tried Entocort and Methotrexate and neither has worked for her. For some reason, her doc doesn't want to move her to biologics and he won't use Imuran.

MLP uses the Crohn's exclusion diet. Very similar to the IBD-AID but there are a few differences.

There is a lot of research coming out of Israel and Japan on diet and it's benefits. The problem is the success of these diets is has only been linked so far to clinical resolution of symptoms. No studies on endoscopic results or even very reliable biomarker results yet.

I whole heartedly believe diet makes a difference. Whether or not it is enough to control disease alone is still to be seen but I say no harm in trying!

One key with reintro is to take it slowly and pick your foods wisely.

Check out the Parents section and the subsection on diet. Lots of info there.

Good Luck! Let us know how you get on.

 

[crohnsinct]

Oops..I forgot the link to MLP's thread:

http://www.crohnsforum.com/showthread.php?t=71686

 

[my little penguin]

Ds is on partial enteral nutrition plus the crohns exclusive diet in addition to humira and methotrexate .
He currently drinks about 80% of his calories from peptamen jr with prebio and eats 20% from the list of allowable foods
He has done this April of this year.
The small amount of food keeps him happier.
Our end goal is 50/50 but they may never happen .
For now it works so I go with it
Good luck

 

[Maya142]

Hi no real advice since my daughter didn't do EEN but just wanted to send hugs. Your poor boy, he's been through so much! Check out the parents forum - there is a lot of info there!

Good luck, I hope your son feels better SOON!

 

[Lady Organic]

I invite you to take a look at IBD-AID diet which is in my signature below. Look for Table 2 where food is very well described. Could give some ideas on where to start. wishing your family well.

 

[DavidXU]

Hi there. Boy your son is really going through it eh? I am so sorry for all the trouble he is having.

By liquid diet are you referring to Exclusive Enteral Nutrition? (maybe not because he is having some oats and honey) Is he drinking his formula or using an NG Tube? For how long will he be on formula?

Both of my girls have done EEN to knock out inflammation and get then to remission. Generally speaking, enteral nutrition works best if exclusive although some centers are having success with 80/20. Typically, once food is introduced, unless there is a maintenance med, inflammation returns. Again, however, some centers are having success with up to a 50/50 plan.

My oldest went to an anti inflammatory diet after she did EEN and has done very, very well on it. She remained on Remicade but once we did the EEN and diet her health really took off so I have to assume more is at play than just Remicade. Even her GI can tell when she slacks on her diet. For her it is all bout clean foods. Limited dairy, very, very little meat (this info came from the Japan and Israel studies), little to no processed foods.

My younger daughter go to remission using EEN and we went to a similar diet but she couldn't get past the 80/20 without inflammation returning.

She is back on EEN and after this try we are going to use the IBD-AID diet that came out of UMass. The diet is similar to the SCD diet but allows more foods. This diet uses the principles or probiotic and prebiotic foods. It does not allow any grains, no lactose, no sugar, no corn and obviously no processed foods. It does allow lean meats but we will be limiting those to once a week based on the results of the Japan and Israel studies. She is 5-6 weeks EEN and then 80/20 for 8 weeks and we will take it from there. Our hope is to get her to 50/50 and that is where she will stay. She has tried Entocort and Methotrexate and neither has worked for her. For some reason, her doc doesn't want to move her to biologics and he won't use Imuran.

MLP uses the Crohn's exclusion diet. Very similar to the IBD-AID but there are a few differences.

There is a lot of research coming out of Israel and Japan on diet and it's benefits. The problem is the success of these diets is has only been linked so far to clinical resolution of symptoms. No studies on endoscopic results or even very reliable biomarker results yet.

I whole heartedly believe diet makes a difference. Whether or not it is enough to control disease alone is still to be seen but I say no harm in trying!

One key with reintro is to take it slowly and pick your foods wisely.

Check out the Parents section and the subsection on diet. Lots of info there.

Good Luck! Let us know how you get on.

It is great to hear that hospitals in the US are taking diet treatment seriously. Hope to see more research outcomes.