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Holding off on Remicade - Nutritional advice?

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Crohn's Disease
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Posted 1/5/2011 8:17 PM (GMT 0)
Well, after much, much thought we are going to hold off starting Remicade on my 15 yr. old son (just diagnosed) for the immediate future.  We will do another set of labs the end of January and see where we stand.  Though we don't have the dr.'s blessing, she is willing to work with us through this.  I realize we may only be postponing the inevitable, but this feels right for now.

So, I am looking for any tips on remission through diet and nutrition.  Anyone have success with that?  I have heard much about the SCD diet and am going to read the book/books on that.  Thanks for any ideas y'all may have.

Julie

Posted 1/5/2011 8:35 PM (GMT 0)
I believe diet really does play a very important role and helps the body heal and feel better than with medicine alone. With that said, it is still so individual! As you see on here, what works wonders for some did nothing for others. I have tried two diets specifically,(Eat Right 4 Your Type and Specific Carbohydrate Diet) that I no longer follow. Currently I am doing a modified diet on what I have learned about my body and inflammation.

My main thing is to limit sugar, I try to have No sugar 5-6 days a week and a treat or low sugar 1-2 days a week. I also limit my Fructose per the Fodmap diet, from my research natural sugar like from fruit is a lot better than refine sugar but too much fructose can still hurt the body. Sugar creates inflammation and lowers/disrupts the bodies immunity.

If you want my 2 bits, No sugar to help lower inflammation and track everything he eats no matter what you try. Keeping a log of what he is doing and eating can really open up a wealth of knowledge about his disease and what helps, heals, hurts, ect. My dad and I both have IBD and what bothers us is so different! about the only thing we have in common is good probiotic yogurt always helps and sugar hurts!
Posted 1/5/2011 8:41 PM (GMT 0)
Breaking the VIcious Cycle is the SCD book you should start with.

I suggest you also look at Life Without Bread. This describes why low carb is good in general and specifically for crohn's

Nourashing Traditions by Sallt Fallon - Lots of great stuff.

Makers Diet is another

Low Res

FODMAP

I use a combo with SCD leading the way.  I am low carb from Life without bread. I use Nourashing Traditions for fermented vegs and stocks. I exclude mushrooms from FODMAP. I exclude pork from Makers.

As you become more familiar with this site you will get lots of differnt opinions. The one thing I do know is that unfortunatly there is no single approach that will work for everyone. I think you will have to do what others have had to do. That is read, learn, decide what makes sense to you, give it a try, learn, and discard or refine.

I decided to really get serious about what I eat, so I have learned a lot and made massive changes to what I eat.

At this time I feel between darn good and great, and rightly or wrongly I believe that the diet change has really helped.

This is a journey that we can help each other with, so let us know your thoughts and progress, please, even if you decide diet change is not the path for you

All the best

Dave

Posted 1/5/2011 8:49 PM (GMT 0)
Hey Cupcake - I agree with everything you said. I eat no sugar in anything and probiotic SCD yogurt at least twice per day.

One more thought re diets. I think you will see the same thing I noticed if you read and learn about the diets I mentioned. There is lots and lots of overlap. For example, If you are SCD compliant, then it is real easy to be low carb cause SCD takes out all sugers, rice, bread... that are high carb. Makers says do not eat refined food, so does SCD. Some of the logic might be differnt from diet to diet but they all come to somewhat similar conclusions. And a couple of them are as CupCake said, no sugar and probiotic yogurt
Take care
david
Posted 1/5/2011 8:59 PM (GMT 0)
Well the above diets work well for some, remember that they do not always work for all. But most importantly I can understand your son's doctors reluctance. Diet and medication should be considered as complimentary of eachother. Without any medications you are not treating the Crohns. And this is a chronic and incurable bowel disease. I have experienced the horrible results of not treating this disease without meds and it wound up with an emergency resection and years to get me back to remission. So for me I will never be without meds again, the consequences were extremely painful and stressful. JMHO
Posted 1/5/2011 9:15 PM (GMT 0)
Jamcakes, although you don't want to start remicade, are you going to use another med? A 5-ASA?
Posted 1/5/2011 9:31 PM (GMT 0)
I think dfdavedf and I follow similar philosophies. I never really think about it, but reading his response, in addition to no sugar I am pretty low carb. And the lower carb I seem to go the better I feel. One of the weeks I felt best this year is while we were on vacation for christmas.

I pretty much ate a spinach omelet and bacon for breakfast everyday, yogurt/fruit/nuts for lunch everyday, and meat/fish and veggies every night for dinner and I felt great. And usually traveling is hard on me!
Posted 1/5/2011 9:34 PM (GMT 0)
You might like to look into enteral nutrition: this can have good results with teens, often on a par with very high doses of steroids.

You can find more information in the "nutrition" link in my signature.
Posted 1/5/2011 9:44 PM (GMT 0)
I agree that diet is important, however it doesn't substitute for medication. You aren't treating the disease with diet, you are avoiding the ramifications diet wreaks on our system by treating the symptoms. You need to treat the disease, especially if he's just been diagnosed and in a flare. Whether that be Remicade or maintenance medication he really should be on something so when he flares again, and he will, it is mitigated by the meds.
Posted 1/5/2011 10:04 PM (GMT 0)
Although I have tried nearly everything to control my disease naturally, I was not successful without biologics but if you are trying to go all natural without medications, I suggest all the above suggestions BUT with the addition of organics. I would also see a Dr. that specializes in naturopathic medicine. I eat mostly organic as I find that if I eat out or even cook food at home that is not organic, I flare so I pair my organic meals with prescription medications and natural herbs and vitamins to maintain my remission. Best of luck!
Posted 1/5/2011 10:07 PM (GMT 0)
I agree with Jenn.
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