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
How can one limit ostomy output while sleeping?
4 months after my colostomy, I developed Phantom Rectal syndrome. My highly qualified surgeons knew nothing about the condition.. My symptoms were much worse than anything I read about on the internet. Throughout the day I felt every feeling one could have in their rectum including the feeling of passing a stool after you’ve been constipated for a week. Over a period of months, it got worse to the point of feeling violently sodomized. This occurred daily for bouts of several hours . No medication helped at all. This became a form of torture so severe that I rationally Inquired into voluntary assisted death. Eventually I found hope and the medication to make life bearable. The two drugs that saved my life were buprenorphine which is an opiate they give to treat heroine addicts and cannabis with THC. Good luck to anyone afflicted with this unimaginable tortuous condition. You can contact me if you have any questions.
Have rectal phantom rectal with sharp pain in lower right back. Is there any drug I can take?
Did you have your rectum removed with your colostomy surgery? 15 years ago I had my colon removed andI now have an ileostomy. I was left with 5-6 inches and my rectum. They pulled the end of that remaining 5-6 inches up through my abdominal muscle so I have a hernia (that part is fine, he did this because he thought he was going to have to do a 2nd surgery as he suspected strongly that I would develop infection post op and he would need easy access and apparently that was why the end is closed but on top of my abdominal muscle instead of inside). I experience these pains several times a day and much more frequently in the recent past. The pain is excruciating and almost unbearable. It literally stops me in my tracks. I can feel it starting and increasing in a wave, it peaks and then with time it dies down. Much like a contraction during giving birth. The pressure is intense and my body tells me I need to bear down and have a bowel movement. I need to squeeze my rectum tightly or else it feels as if my insides will burst out. I have thought that it may occur when stool is passing over where the nerve ends were left, giving the false brain stimulation that there is stool in the rectum. The literature infers that this happens as phantom pain when you have no rectum … I just want to now if you do have a rectum and that this phantom pain also happens when the rectum is still intact. Thank you so much for being receptive to taking questions . I have wanted to speak with someone who experiences this too. I know if this pain were constant I would also not want to keep living.
I have had my complete large colon and rectum removed 19 years ago. I have an ileostomy. I am just now having phantom rectum signs of pain and discomfort. Why is it just now happening?
I have recently had surgery and ended up with both an ileostomy and a urostomy. Recently I have developed what I believe is phantom rectum. It is constant and is affecting my quality of life. I can’t sleep because the pressure/pain never goes away. I don’t know what to do. Ugh
It’s 10/26/22. I had my 1st surgery 10/2005. I had sepsis from my eroded colon ulcer that leaked into my abdomen. My Dr thought I had left sided colitis, but I have Crohn’s. I lost my colon up above the ileum, thus an ileostomy, but he left a rectal stump. I was very unhappy with a pouch and the next doc took advantage of that by selling me on a pouch, AKA a J pouch. (I wish I could share his name here, for all to avoid) I was forced to endure the most pain I’ve ever known all to end up having it removed (I’ve had 26 surgeries) He put me through 3 unnecessary surgeries that left me worse off! All because he “assumed” that all data about me was correct… it was not, I had Crohn’s not Colitis. Had I not been sooo sick, I’d have sued him, saving everyone from his greedy knife. So I ended up having that removed, including the rectal stump, and I lost more intestine. That was 12 or13 years ago.
Now I’m having PRS for the last year or so. I’m losing my mind! They won’t give me opioids, even though they work, so I’m forced to rely on THC which offers a little relief.
I often consider suicide since my needs are being ignored because of the unfair, ridiculous war on opioids. Fix that by not toturing those of us who need opioids! So my PRS started yrs after surgery. I can’t pinpoint why, it’s maddening! I can’t escape it!! At least it’s not 24/7. It’s every single morning, and often random times during the rest of the day. I can’t make sense of it. I often imagine them electrocuting whatever nerve is reacting to whatever stimuli is going on in order to kill the nerve.
I have no idea how I’m going to live like this. I have a disabled autistic adult child that still needs me here. There needs to be more compassion and research into this seemingly ignored issue as well as this insane ounishment of people needing the pain relief that opioids offer. Not everyone who takes it is an addict. With that thinking, we should make alcohol illegal too because some people abuse it! I’m tired of this upside down world.
I to suffer from rectal pain it is real
And for me my description of the sensation is like having half a house brick stuck in there the violent pain stops me in my tracks and can only be alleviated by long periods sat on a toilet trying to trick my mind I some times resort to heamaroid cream the kind with a numbing effect when it gets really bad this helps a little my surgeon has offered the removal of the rectal stump bur I am only 7 months out from surgery and just getting back to some kind of normal more surgery is the last thing I want I have tried asking about
Pessary or suppositories or other forms of medication but nothing is available
Apparently normal pain killers do not work plus as the pain is sporadic and unpredictable they are not fast acting enough Ifvyou have this condition I really feel sorry for you it makes an already difficult situation much worse take care yall