My son has been on remicade for approx. 5 years now. He did not lose weight after starting remicade. However, his treatment prior to remicade had been enteral nutrition (nutrition formula). To induce remission he was taking in 3000 cal/day thru the nutrition formula and no other food. Then, to try to maintain remission using the formula as the treatment, he was eating a regular diet PLUS taking in 1500 cal/day from the formula. This process, over a couple of years, helped him gain 40+ pounds to get to a healthy, strong weight/build (he'd lost quite a bit prior to diagnosis).
Once he started remicade, he stopped taking in so much of the nutrition formulas but moved to drinking 1-2 Boost shakes per day. He still continues to do this. I'm sure the extra calories from the shakes helps maintain his weight (and nutritional intake).
Did any scar tissue show on the scopes? I'm asking because he could be in remission but have old scar tissue and, IF I'm correct??, nutrients cannot be absorbed through scar tissue. Perhaps this could be a factor?
But, the lack of appetite is a different issue. That should also be investigated. Something is causing his lack of appetite... be it crohns or gastroparesis or something else.
If he can tolerate the Ensure shakes, I would continue with those as much as possible. But, be sure they are not 'replacing' a meal as you'd be no further ahead in this case.
:ghug: