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Crohn's Disease
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Posted 1/7/2010 3:49 AM (GMT 0)
 my name is bob and my boy13, was diagnosed 4 years ago. immuran left him sick and arthritic. two years ago remicade was recommended. we took him aff all meds, and now work with diet( organic, nondairy, no gluten mo sugar, probiotics and enzymes, lots of suppliments) and environment( no carpet, stainless steel cookware. air filters etc. holidays can be rough, but all in all, he is doing better. the only draw back is lack of growth. we have just started giving him absorb plus suppliment. does anyone have any experience with this product? thanks
Posted 1/22/2010 7:37 PM (GMT 0)
this product came as a digested(?) supplement. it was from the book The IBD Remission Diet by jinni patel(S)
Posted 1/22/2010 7:41 PM (GMT 0)
I read her book and soon after ordered the Absorb Plus. Unfortunately it did not agree with me. (had me running to the BR) Everyone is different though and I wouldn't let my experience deter you from trying this. Good thing is, it has a pretty pleasant taste and seems very hearty in nutrients. Buy the sample pack or just one bottle before you order a lot. Good Luck!
Posted 1/22/2010 8:48 PM (GMT 0)

I bought the sample size trial bottles for my 9 yr old recently. We both tasted it and we both thought it was really gross, so ... another plan failed.  Most recently, I've purchased some EO28 Splash for her.  It is made by neocate (you can google it). It is a juice box that comes in a few flavors, that is a formula specifically for kids with GI distress.  A few I've emailed with have used it successfully. We ordered it in grape, but again...my daughter hates it. THis is a bummer, because her GI Doc did specifically say that if she could get even 25% of her calories from it she may start gaining some weight.  Most of the kids I've heard of have liked it. One parent here has a child who is 12 who has recently gone into remission with the Splash, and has gained lots of weight. They are thrilled.

In the meantime (we are awaiting her 2nd scope next week), her Doc also told us to put her on a low residue/low fiber diet. We've done this and WOW.  This is the most success we've had.  She feels great, is eating SOOO much more than she did just a week ago, hasn't had diarrhea, and has gained one pound in only a few days.  It's not a long term solution, cuz she can't live on pancakes forever, but it really does show me how much the fiber and crunchy things bother her. Amazing.

Posted 1/22/2010 10:53 PM (GMT 0)
Mooby: Great about the weight gain! You might want to see if your daughter would be willing to drink 1/2-bottle of the formula she dislikes least at three meals per day for at least two days. Even people who don't like a given formula at the outset will often adapt to it if they stick with it a couple of days to give their taste buds a chance to adjust.
Posted 1/22/2010 10:55 PM (GMT 0)
Another thought: Since she is doing so well just by removing fiber, you might want to try giving her tasty liquids such as milk shakes to get some extra calories in.
Posted 1/23/2010 1:51 AM (GMT 0)
bob, if your child isn't growing, it means he can't absorb nutrients because his disease is still active. One way they tell if treatment is working is if a child is growing. I hope you can find a suitable medicine for him. I'd take my kid back to the doctor, but that's me. Good luck to you.
Posted 1/23/2010 4:16 AM (GMT 0)
Bob - There's also a multi vit made specifically for GI disease. It is called Forvia. You can check it out at forvia.com. Not sure if it would help, but I feel better knowing my daughter is on a good multi that meets her needs specifically.

Writer - great idea! Thanks. I'm going to start giving her the juice in smaller doses over the course of the day. We'll see how that goes. As for milk shakes, seems to be vanilla only. Chocolate tends to give her a tummy ache. Do most Crohnies have problems with chocolate? It's a shame, cause of course she loves it.

Posted 1/24/2010 4:04 AM (GMT 0)

jeanneac said...
bob, if your child isn't growing, it means he can't absorb nutrients because his disease is still active. One way they tell if treatment is working is if a child is growing. I hope you can find a suitable medicine for him. I'd take my kid back to the doctor, but that's me. Good luck to you.

we have been to the doctors. he was not thriving on the immuran either.the only weight that he has kept on was gained while on prednisone, and then another ten since quitting immuran. also, since going organic, his arthritis has disappeared completely.

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