Need advice for treatment through diet

[michelle916]

Hello! I am new to this site and am in need of advice. My 9 year old son was diagnosed with Crohn's about 1 month ago, although he has had symptoms for 6 months. In that short period of time, he has developed a fairly moderate case all throughout his GI tract, with about 20 ulcers in his esophagus and more in his intestine, and spiking fevers up to 105. We have it under control now with the use of a steriod, but the next step is to wean him off and start 6-MP.

My concern is about the side effects of this drug, and while I know many of them are only a slight risk, the effects on bone marrow and damage to the liver are much more common, and are what concern me. What is your long term experience with this drug?

My next question is about diet. I have been working with a doctor who also does nutritional counseling and he feels 100% certain that Crohn's can be controlled completely through diet. He gives a very compelling theory which is --finding what it is that the body is sensitive to that is triggering his immune system to fight back. He has seen positive results with many of his patients who no longer take any drugs what so ever. The fact of the matter is no one knows what triggers the immune system with this disease and it does make perfect sense that what we put into our bodies does effect our health. So, now that you all probably think I'm crazy for buying into the diet thing (because the medical community absolutely does not), I may as well say I now have my son on a diet that is free of gluten, dairy, nitrites, MSG, antibiotics, and hormones. The plan is to eventually add each back into his diet one at a time to see which causes him to react. Is there anyone out there who has had personal success with this or has an opinion to share?

I would appreciate any input, good, bad, or ugly at this point!

 

[new2crohnsinVA]

I was 28 when I was diagnosed so I can only imaging how hard it is for a 9 year old.

While I find the side effects scary sometimes, I think the benefit of being able to eat and drink (even water caused pain at one point) and be without symptoms is worthwhile. I'm on Humira, which had me worried because of my exposure to my two small kids in day care who are constantly exposed to colds. The steroids were unpleasant because they caused strong mood swings.

Personally, I only partially agree with the diet portion. I think during a flare, medication is needed to get it under control. During remissions, diet is a main factor. I was told by my GI to eat more protein and less fiber in general and to pay attention to how I feel after certain foods. Fried or greasy foods tend to cause problems the next morning (even on the same day as my Humira injection). Not a problem for you son now, but alcohol causes bad diarrhea if I don't have carbs or meat with it. I generally have really good days if I start with eggs instead of cereal.

 

[mizgarnet]

I think your doctor is very wise. I would rather give up hot dogs than to take some of the meds out there. Diet can and will put you in remission.