I am new here and looking for answers because even with all the best intentions in the world doctors just dont have enough answers. I was first diagnosed Jan 2012 (originally 2004 but diagnosis retracted and symtoms disappeared until 2011) . Started with mild joint pain in elbow april 2011 and by June 2011 full on diarrhea with blood in stool, looked like I was hemorraging for 2 weeks. Bloody stool stopped but diarrhea continued as many as 15 times per day. Had episode where I broke out in rash on hand (red itchy painfull spots) two days later followed by joint pain all over body (interesting side note, I woke up one day a couple years earlier with red spots all over knees and elbows that cleared after a week or two and did not happen again and few months later a rash on lower abdomen that looked like a large staph infection according to primary doc). In August 2011 saw a primary that gave me meds for joint pain, mentioned the chronic diarrhea but he had no idea and sent me to a rheumatologist.
After explaining all the systems to the rheumatologist he insisted I first meet with a gastrologist. The rheumatologist diagnosed Ankyolosing Spondalitis but a few months later said he was not sure of his diagnosis. Finally after several months of colonoscopy/biopsies of the colon etc several pathologists agreed with the diagnosis of Crohns with no blockage or displasia. Several months later finally start Humira 40mg 2X per month after trying several DMARD's. The diarrhea is better and MR Enterography shows earlier inflamation gone or at least not detectable according to radiologist but I still have bouts every couple weeks lasting several days at a time and one serious episode of bloody diarrhea for two days about one month ago.
Although the diarrhea has improved significantly I continue to have joint pain in the back and hips every day and bouts of severe joint and muscle pain (seems to coinside with the bouts of diarrhea) in hands, elbow, knees and feet, however all labs come back normal for CRP, Sed Rate etc. It would mean a lot to have a definitive diagnosis on the joint pain, it is really interfering with quality of life, pain meds help but not the permanant answer (prednisone really helped before but could not tolerate side affects). Is it possible to continue with normal labs (labs done 3 times for this) but have the joint pain continue like this? Anyone with knowledge in this area please help!!
After explaining all the systems to the rheumatologist he insisted I first meet with a gastrologist. The rheumatologist diagnosed Ankyolosing Spondalitis but a few months later said he was not sure of his diagnosis. Finally after several months of colonoscopy/biopsies of the colon etc several pathologists agreed with the diagnosis of Crohns with no blockage or displasia. Several months later finally start Humira 40mg 2X per month after trying several DMARD's. The diarrhea is better and MR Enterography shows earlier inflamation gone or at least not detectable according to radiologist but I still have bouts every couple weeks lasting several days at a time and one serious episode of bloody diarrhea for two days about one month ago.
Although the diarrhea has improved significantly I continue to have joint pain in the back and hips every day and bouts of severe joint and muscle pain (seems to coinside with the bouts of diarrhea) in hands, elbow, knees and feet, however all labs come back normal for CRP, Sed Rate etc. It would mean a lot to have a definitive diagnosis on the joint pain, it is really interfering with quality of life, pain meds help but not the permanant answer (prednisone really helped before but could not tolerate side affects). Is it possible to continue with normal labs (labs done 3 times for this) but have the joint pain continue like this? Anyone with knowledge in this area please help!!
