What is remission really??

Hello everyone. Love reading your posts, it helps a lot! Sometimes I feel funny adding on b/c it's my daughter with Crohn's, not me. Anyway, we've been doing the Remicade every 7 weeks for year and a half now. Dr. says blood looks good and we should continue with it. dd says she is having more diarrhea and pain than last year. Seems like more and more foods irritate her stomach. She is 14 and doesn't always tell me when she flares, but I know ;) After first few infusions, it was amazing!! But it seemed to lose it's effectiveness after those first few months. All fruits and veggies cause pain and depending on how much she eats, usually has to use the bathroom. She eats potatoes, plain noodles and meat with no seasoning. Black pepper just about kills her, no red sauce, no citrus, NO veggies, no beans, etc....Is that normal? I'm just not sure if that's just the way it is or if we should be trying a different med or add something with the Remicade. Thanks in advance for your input :)

Hi. If they only welcomed people with crohn's on this forum, I'd have been kicked out a long time ago. I do not have crohn's, my hubby does. Also there are plenty of other parents on this forum. So welcome to this forum.

I am sorry your daughter is feeling poorly. I think in order to determine what to do next, we need to determine if there is some crohn's activity going on, or if this is IBS. My husband is now on prednisone for a flare up that showed nothing in the blood word (completely normal). He had to get a CT enterography (that the GI ordered very grudgingly) and it showed bowel wall thickening, which indicates inflammation. So, it is quite possible to have a flare up and not have anything wrong in the blood work.

I think you should discuss other diagnostic tests with your daughter's GI - maybe like a CT, or a pill cam, or a colonoscopy - whichever is appropriate for her. Perhaps this will tell you if crohn's is active. If crohn's is active there are 4 courses of action you could take:
1.) Squelch this flare up with a short course of pred, and see if the remicade continues to help keep her in remission
2.) Increase frequency of remicade and/or dosage of remicade
3.) Add a different med (methotrexate, 6-mp or Imuran) in addition to the remicade to push her towards remission
4.) Switch from remicade to another anti-tnf agent like Humira or Cimzia

If the crohn's isn't the reason for the problems, then, perhaps try an elimination diet to help the symptoms, and keep a food diary to see if there are any triggers, or allergies.

(((Hugs))) I know how hard it is to cope with a loved one who suffers from this darned disease. I hope your daughter feels better really soon.

PV

so sorry about your kid, remission came for me onlythru surgery, but my cd is in sm. bo. only(not counting mouth, throat) med's are keeping me from going under the knife now, but still have pain when I eat and other post op comp. from years ago. ssdi from post op comp's. oh yea pain med's. to keep from those rough cramping thingy's