What is Phantom Rectum Syndrome?
Phantom Rectum Syndrome sounds like a horror movie, but it is a real phenomenon that is experienced by nearly all ostomates who undergo Abdominoperineal Resection (APR) surgery[1]. This is not a psychological issue of “it’s all in your head” but is experienced in up to 80% of all amputees, from legs to eyes, breasts, bladders and even rectums. Phantom Rectum Syndrome (PRS) is when individuals continue to have sensations of an intact rectum that is no longer present. The exact pathophysiology of PRS is not known but it is suspected that the excised pudendal nerve regenerates and sends false messages to your brain. There are two types of PRS: painful and non-painful. Research is limited but shows most people experience phantom sensations during the first few months after surgery. Some people report that it goes away with time, and others say it comes and goes.
Non-painful PRS reported by ostomates are the feeling of a full rectum and urge to have a bowel movement or pass gas [2]. Interventions to relieve such sensations are to sit on the toilet and bear down as if you were having a bowel movement. These sensations can cause distress and negatively impact an individual’s quality of life. One ostomate told me he sat on the toilet for hours after his surgery, but it did go away after a year. Many people report these symptoms coinciding with passing stool from their stoma. Physical activity such as walking, or exercise are helpful distractions. Phantom rectal sensations usually go away on their own and are short lived compared to phantom pains.
Phantom rectal pains have been described as mild to moderate shooting pains, cramps, pins and needles, bursting feeling, tight aching, itching, and stinging. Frequency has been reported anywhere from daily to monthly. Phantom rectal pain occurs within a few months after the wounds have healed. Research shows that individuals who experienced pain before the amputation were more likely to have phantom pains after amputation. Late onset of severe rectal pain should always be evaluated for possible cancer reoccurrence. Many individuals experiencing phantom rectal pain claim to have poor sleep and quality of life due to chronic anxiety and worries of cancer recurrence.
PRS pain is real and should be discussed with your physician. There are numerous treatments and interventions in the management of phantom pain including pharmacological interventions such as analgesics, anticonvulsants, antidepressants, muscle relaxants. Nonpharmacological interventions include electrical nerve stimulation, cognitive behavioral therapies, hypnosis, acupuncture, even virtual reality.[3] Unfortunately there is no way to predict which treatment might work for any given patient. Just know that you are not crazy and there are others feeling your pain too. Reach out and talk to another ostomate.
[1] Fingren, J., Lindholdm, E., & Carlsson, E. Perceptions of phantom rectum syndrome and health-related quality of life in patients following abdominoperineal resection for rectal cancer. Journal of Wound Ostomy and Continence Nurses Society. (2013) 40(3): 280-286.
[2] Gould, C.R., & Branagan, G., Phantom rectal sensations following abdominoperineal excision of the rectum (APER) and vertical rectus abdominis myocutaneous (VRAM) flap perineal reconstruction. International Journal of Colorectal Disease (2016) 31:1: 1799-1804.
[3] Yildirim, Meltem, PhD, MSN, Sen, Sevim & PhD, MSN. (2020). Mirror Therapy in the Management of Phantom Limb Pain. AJN, American Journal of Nursing, 120, 41-46. https://doi.org/10.1097/01.NAJ.0000656340.69704.9f
Dear Laura, I wear a two piece ostomy bag. I need help with concealing an ostomy bag. When I move around my shirt hikes up and the tip of the bag peeks out from under my shirt.
