Hi superspike25...just to let you know, several yrs. ago, when they actually still had CCFA support meetings in my area, there was a young guy (actually, I was young then too) that was embarrassed to say that he didn't suffer from diarrhea. We were all amazed & while I was initially envious (his only symptom was severe fatigue), I began to realize how difficult it was for him...severe fatigue is one of my biggest complaints. I'm sure that he felt really alone...probably would've been better off in a Crohnic Fatigue Syndrome group (although I don't believe that this was a recognized disease at that time). If you're not having diarrhea but suffer from symptoms of malnutrition, it would seem that you're inflammation centers in the small bowel/ileum? Have you had any surgery? I know that it's difficult to treat the small bowel...resection results in the lack of nutrient absorbtion which you obviously already suffer from. I'm actually at a loss for words. My only possible suggestion is if you can find a way to tell if a flare-up is coming (often, my knees start to ache). Maybe you should try to keep a journal for awhile & see if any pre-symptoms stand out...at least you could seek treatment before things get really bad. Have they put you on TPN (Total Parental Nutrition)? Which is worse...constant pain/diarrhea or frequent hospital stays due to malabsorbtion? Difficult to answer. Please keep us updated. I'd like to know if the Remicade helps in your case. Wishing you remission!
25+ yrs. Crohn's Disease Sufferer; 2yr. Ostomate (ileostomy)
2yr. Remission for Conjunctival Malignant Melanoma
Cipro as needed; Children's Vitamin/B-12 Supplement; Xanax as needed; Clonazepam 3x daily; Levothyroxin for Hypothyroidism (too many former Crohn's drugs to list)
Several Eye meds used to help prevent further damage resulting from treatment for eye cancer
(former 6-MP/Remicade user - ceased due to cancer diagnosis)
Resection-'91, Sub-total Colectomy-'93, Rectal Abcess Excision-'01, Ileostomy-'06 (several other unrelated surgeries)