phantom rectum

Phantom Rectum

Phantom Rectum.  No, this isn’t a really great band name or a ghostly arsehole, but an actual thing that people without a butt sometimes have to deal with.  Let me explain…

You know you hear about people who have had a limb amputated who have a feeling in said limb?  It could be pain, itching or tingling.  This could be due to damage to nerve endings or it could be activity within the brain as it struggles to deal with the fact that limb is no longer there.  This phantom limb pain is very, very hard to treat.

So back to phantom rectum…

People with phantom rectum feel like they need to go to the toilet, even though they do not have a working rectum. This feeling can continue many years after surgery. Some people have found sitting on a toilet can help to relieve this feeling.

sam cleasby so bad ass phantom rectum

Some people also experience tingling, pressure, stinging, burning, pain, itching or aching.  Despite the comedic name, it can actually be really miserable and affect self esteem, confidence and mental health in some people.

Sometimes phantom rectum syndrome is found in patients who still have a rectum, but  don’t have it ‘connected’ as they have had ostomy surgery or other operations to divert stool away from it.  They may experience phantom rectum because of a build up of mucus in the rectum.  But it is also experienced by those who have had the rectum and anus removed completely, this could be because of scar tissue, nerve damage or a psychological effect.

I am only a few weeks out of surgery but I definitely get the old phantom rectum symptoms, I really do think mine is my brain telling my body to do something it can’t.  For example, after a morning cup of coffee when you get ‘that’ urge, I still get that, but there is nothing down there! I can only poo through my stoma, I have no rectum or anus yet I get a real and true physical feeling that I need to pass stool through my butt. It is a very odd sensation though I am getting used to it.  I do still have some pain there, but I think this is because I am still recovering and healing.

sam cleasby parenting blogger fathers self esteem

So what can you do?

If this is a problem for you, firstly, speak to your specialised nurse, GP or doctor to rule out any other issues.  Self care involves sitting on the toilet, relaxation techniques, soothing skin with creams.  Doctors may be able to prescribe medication or other therapies.  Unfortunately, like Phantom Limb pain, it can be very difficult to treat.

For many people it is inconvenient and a bit annoying rather than life altering and I think I am lucky to be in that gang.  Symptoms tend to resolve spontaneously in 50% of cases. Phantom rectum is relatively common but symptoms are usually mild and resolve in time.  I refuse to be embarrassed by this though, and thought a blog post was in order to get people talking about their ghostly butt.

And for the record, I bagsy the name So Bad Ass and the Phantom Rectums for my band name!

 

3 replies
  1. Millymollymandy
    Millymollymandy says:

    Love the band name! I’ve only had phantom rectum a few times but it’s really weird. For me it’s like “ohmigod I’m about to have diarrhoea”, then I realise I have a bag so I don’t need to worry about it. And it wasn’t diarrhoea anyway. 🙂

    Reply
  2. Rachel H
    Rachel H says:

    I had to have an emergency ileostomy around Christmas 2013 & even now, I still suffer pain & pressure in my back passage (despite the fact it is no longer connected. I was first told that my rectum was removed & closed off, but then I saw a totally different doctor (for other reasons) & when I tried to say that I often feel phantom pain in my back passage; he told me that I couldn’t be feeling it, as “his notes” suggested that I didn’t have it completely removed & so it wouldn’t be possible. Neither me or my mum could believe what he was saying, as he was basically saying that my pain is “all in my head”, which only made us feel angry & certain that he was the one who had got things wrong. After reading this article, I’m now 100% certain that I was right & that doctor was mistaken. I know that doctors can get things wrong too sometimes. In fact, it’s because A&E staff confused “sepsis” with “constipation” that I no longer have a large bowel, so that only proves my point. I had insisted that I had something wrong, but was ignored (& almost died as a result). It just goes to show, sometimes the patient can be more knowledgeable than the doctor; because THEY are the one who is feeling all the symptoms. Sadly, no amount of pain relief helps me, as I’m growing an immunity to the morphine-based meds I’m taking several times every day. If I try to go to the doctor again, they will only suggest taking me off my medication, which can only make things worse for me (as the phantom pain is just one of many pains I deal with every day). I just have to try & distract myself from my pain somehow. It helps to be able to laugh sometimes…

    Reply

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