A Crohn's disease story

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I HAVE HAD A LONG HISTORY OF " ABDOMINAL PAIN ,LOOSE STOOLS, BLOODY STOOLS". I WAS DIAGNOSED AROUND 1989 WITH CHROHNS FOLLOWING AN EPISODE OF BLOODY LOOSE STOOLS. I HAVE HAD FATIGUE , JOINT PAIN , WEIGHT LOSS AND ABDOMINAL PAIN WHICH HAS BECOME MORE FREQUENT THE OLDER I AM. I AM CURRENTLY IN A FLARE THAT WOULD HAVE BEEN ADDRESSED HAD I NOT HAVE HAD A FALL THAT RESULTED IN ME REQUIRING MAJOR ORTHOPAEDIC SURGERY ( REVERSE TOTAL SHOULDER REPLACEMENT). MY GI HAD MANAGED TO GET MY SYMPTOMS UNDER CONTROL WITH CORTICOSTEROIDS AND I WAS AWAITING AN APPOINTMENT TO BEGIN REMICADE INFUSIONS WHEN THE FALL OCCURED. UNFORTUNATELY, I WAS SCHEDULED FOR THE INFUSIONS THE DAY FOLLOWING MY SHOULDER REPALCEMENT. I NOW HAVE UNRELENTING PAIN , NOT ONLY DUE TO THE CROHNS GI SYMPTOMS BUT IN ADDITION SEVERE JOINT PAIN DUE TO INFLAMATION RESULTING FROM THE CROHNS AFFECTING MY JOINTS. I CANNOT TAKE NSAIDS AND I HAVE BEEN ON NORCO SINCE MY SHOULDER REPLACEMENT. I HAVE TO FIGHT TO GET THE PHYSICIANS TO ADDRESS MY PAIN AND PRESCRIBE MEDICATIONS THAT WILL KEEP MY PAIN AT A TOLERABLE ( NEVER COMPLETELY FREE OF PAIN) . QUALITY OF LIFE IS PRIORITY BUT HOW DO WE HAVE ANY QUALITY OF LIFE WITH ONGOING SYMPTOMS ?