Phantom Rectum Syndrome

Nurses and physicians understand limb loss and pain experienced at an amputation site. This pain is called Phantom Limb Pain.  However, removal and closure of the rectum followed by excruciating pain in the rectal area is a condition that is frequently overlooked and misunderstood. This Phenomenon is Phantom Rectum Syndrome (Fingren & Carlsson, 2013).

SR had a history of ulcerative colitis and was treated surgically with a total colectomy, temporary loop ileostomy and creation of a J-Pouch.  After years of diarrhea, pouchitis and sleep disturbances he underwent surgery for removal and closure of his rectum, and ileostomy.  On post-op day three, the patient began to experience rectal cramping.  SR stated that when he urinated, he would get a tight painful cramping feeling in his lower abdomen that radiated to his rectal site.  The patient’s complaint, increased pain and symptoms were difficult to understand.  Nurses began to ask if the patient was seeking a longer hospital stay so he could continue to receive pain medication.

The patient’s wife presented this WOC nurse an article about “phantom rectum syndrome”. The colorectal surgeon ruled out abscess and peritoneal infection and confirmed the diagnosis of phantom rectum syndrome.

The WOC nurse taught the patient that this syndrome is self-limiting and that time would promote sensory re-mapping in his brain to accept the loss of the rectum. Nursing education was needed to avoid labeling the patient as a drug seeker. When nurses understood that what the patient was experiencing was real, and similar to phantom limb syndrome, their attitudes changed and their care improved.  Pain is something we cannot see.  If we cannot see it, we depend on the patient to qualify and quantify the pain. Because we do not see pain, it does not mean it is not there.