I am new to posting, but not new to the world of crohn's. There is always so much more to learn, though! As a background my daughter age 8 has Crohn's since age 3. We have an appt with her GI (and endocrinologist) next week and given her age, I always think more information is better then less when making decisions about her treatment. My gut feel (pardon the pun) is that she has some bacterial issue (infection?overgrowth?) going on. I'd also like to rule out any parasite infection. Her last scope was 1 year ago and she has moderate disease activity throughout her colon--minor in rectum and TI. Her growth is slow she continues to be anemic and SED rate at last test was at 49. Remission has been elusive over the last 5 years and I worry about the increased risk for colon cancer.. We haven't' used any drugs (briefly tried sulfa with negative effects and Pentasa with no effect, Flagyl twice) and have primarily used enteral nutrition to keep symptoms at bay. While nothing has gotten noticibly worse, things haven't improved either. So, I think it is time to make a change/addition but want to best understand what we are dealing with. I am an alternative type of gal, so I don't take the decision to look at drug treatment lightly. Any advise on what tests to ask/push for to help me feel like I am making the best decision possible. She had the CDSA 2.0 done several years ago. She is getting excellent nutrition (theoretically) via the enteral nutrion, but most all foods seem to cause cramping or bleeding so we still have a very troubled situation.
Any advise/experience would be appreciated