Have you ever experienced phantom rectum pain? If you haven’t or not sure what it is exactly this is how I describe it:
the feeling of needing to poo or pass wind from your bum but it either has been sewn up or made defunct by a temporary stoma.
A lot of ostomates have experienced this and it isn’t a particularly pleasant experience and when you think about it, it is hardly surprising as you often hear about people suffering phantom limb issues from an amputated limb.
It is very common in women around their periods and can cause more discomfort than usual and can cause twitching or cramps in the rectal area. That is certainly not to say other genders get it! If you have had a rectum you are likely to get phantom rectum pain it definitely does not discriminate!
I experienced the *joy* of it recently and moaned about it on Twitter and the amount of people essentially holding their hands up and being like “Yep I get that” was surprising plus the large amount of people with “fart envy”! Which I can totally relate too! So when I am struck by the pain I have a very intense pressure behind where my bum hole was (sorry if that phrase makes you cringe) Okay so quick anatomy lesson before we carry on; in case you aren’t *too* sure where your rectum is (which is fine if you don’t we aren’t judging you) the area in red is your rectum or in many of our cases with an ostomy where it used to be. If you have a permanent colostomy or ileostomy you won’t have it any more but if yours is just temporary – they can reverse it – you will still have it.
So back to how I get it (and apparently a lot of other people) –
- pressure behind my previous anus site
- feeling of trapped wind
- the muscles around my anus contracting as if I need to pass something.
If you have a temporary stoma you can try and sit on the toilet and see if any mucus passes; now this may sound gross but it is the bowels natural lubricant and allows your bowel to stay healthy! So what things can you do to help relieve the pain or at least try and trick your mind?
- sitting on the toilet – sometimes even I do that and mine is permanent
- hot water bottles – personally I sit on them or have them on my lower back
- massaging the lower back
- kegel or pelvic floor exercises can help
Something else I learnt was that some people experience phantom stoma movement! Now I never had a temporary stoma when I had my jpouch so I haven’t experienced that but when they mentioned it, it honestly blew my mind! They said that after their reversal they felt like it was pouring out of them even though they didn’t have a stoma and could go to the toilet normally.
Have you ever experienced either the phantom rectum or stoma issues? If so let us know how it feels for you and your tips for getting it to go away.
Phantom rectum is very common after surgery but sometimes doesn’t appear until years after.
I personally find that warm baths, walks and sitting on the toilet, almost telling your brain you’re going the “normal” way can help.
Always seek medical advice if you are concerned.
I had my ileostomy with kpouch about over 30 some years ago and now I’m feeling the Phantom pains really sharp in the rectum area. I have no large intestine or rectum. Any ideas out there how to cope and what it could be.
Hi Marlyn, this sounds very normal to me. If you are worried, it’s always best to seek medical advice.
I’m six months in after APR surgery and I’m experiencing phantom rectum pressure. It’s not painful at all it’s just that I feel I should keep trying to close my bum cheeks!! I assume from others comments that this is normal?
I have this pain nearly every day over a year after ileostomy surgery. The only thing that helped prior was pain killers. Now they don’t touch it. I’m looking for relief also
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