Post Edited (MysteryGirl) : 2/17/2008 4:04:37 PM (GMT-7)
I agree with Belleenstein, the diagnosis may take a long time but you are having the appropriate tests. I hope the capsule study give you your answer.Wondering how your CBC lab results were?
Boy can I relate to a lot of what you are going through! I also had a colonoscopy done the end of November and my biopsies came back negative for Crohn's--my blood work is normal as well. The GI did find ulcers in my TI but those also came back as negative for Crohn's.
My Internist believes that I DO have Crohn's although nothing has proven it yet. I have heard both from her, from a doctor I work with, and from members on this forum that diagnosing Crohn's can take a while and you can have it and have the biopsies, blood work, come back as normal.
I really hope you find something that helps you feel better soon! Please keep us updated and let us know how the small capsule goes!
Hi Mystery Girl,
I also am still officially undiagnosed although I have had good response from pentasa. The gi doctor is basing the diagnosis on that plus the fact that I have some of the other extraintestinal symptoms i.e. mouth ulcers, joint pain.
I would guess that I've had this all my adult life but the pain didn't start until 1997 and I didn't have any gi symptoms for about 6 years. Normal colonoscopies, normal small bowel follow through, normal CT Scan, normal biopsies
Your symptoms are much more severe than mine so I hope you get an answer soon. Too bad the mesalamine didn't help you. Did you try pentasa or asacol? I tried asacol first and it only helped about 50% so my gi doctor suggested I try pentasa. If the disease is in your small intestine asacol won't help, unless its in the TI area because some asacol does get up in there. That is probably what happened with me. So if you haven't tried pentasa I would recommend you ask about that.
I just found this forum and registered because my son is also a mystery case of Crohns. He is only 7 years old, and looking back I think his symptoms started when he was 6. Has anyone else heard of this in such a young age?
He was hospitalized in Nov after his 1st episode of bloody diarrhea. This is when we first were told he probably has Crohns, and received 1 unit of blood for a very low blood count. Colonoscopy showed "Colitis", but no clear indication of Crohns.A huge series of other tests cannot point to Crohns, but the Dr tells us he "looks" like he has it.
He just finished his prednisone(was on for 3 months) and has some blood in every stool (3-4x day)now for the last month. I taught him how to swallow pills, now the Dr wants us to give him Asacol. This is so difficult since we do not know what he has. He is off all milk products, peanuts and eggs (had some delayed allergic reaction to these) and on Glutamine..but still blood in every stool. It is scary, and I feel lost. Now he is having bad headaches from the prednisone taper, and the poor little guy gained 20 lbs!!!
Anyone else with a little one suffering from this? What will his life look like later on with starting this disease so young? Thanks to this site for the supportive folks like you helping one another out !!