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New Member

Date Joined Oct 2007
Total Posts : 2
   Posted 8/21/2008 12:48 PM (GMT -6)   
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

New Member

Date Joined Apr 2007
Total Posts : 14
   Posted 8/21/2008 2:01 PM (GMT -6)   
Wow, she is young. My daughter was diagnosed at 10 and we had to end up doing the remicade infusions so thatshe could eat, and because all of hers meds were coming right back out through her stools. She has been in remission now for a year. But Im still concerned about the longterm effects of remicade. good luck to you and your decision for your daughter.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/21/2008 8:20 PM (GMT -6)   
Hi Welcome to Healing Well . You sound like things do need to have some improvement. I know it must be hard for you .If you are not having some results by now after 5 years there definitely sounds like some meds might be helpful. How long has she been on EN ? lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

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