Phantom Rectum Pain: What Is It and Why Does It Happen?

For those of us rather lacking in the rectum department, phantom rectum pain is a thing that some of us will experience.

Phantom rectum happens after you have had your large bowel removed and your rectum sewn shut. For some of us, this can be debilitating and can impact our day to day life following the surgery. In most cases, it should settle down a year postoperative. For others, it is something they will experience on a regular basis.

Why does this happen?

Once your rectum, anus and large bowel has been removed there is a wound in the perineum that has been stitched/glued closed. For a while, after the surgery, it is uncomfortable to sit down for long periods. This wound takes time to heal and varies from person to person.

The scar from the outside may appear healed but the tissues on the inside are/ may still be healing. You may get the sensation that you still need to pass a bowel movement even though there is nothing there. This is called phantom rectum.

For most of us, the pain will gradually disappear but for others, it will persist after you have healed. It is advised that if this keeps happening then please contact your stoma nurse, GP or consultant to make sure there are no underlying medical issues that could be causing this pain.

Underlying medical issues could be as follows

An abscess
A reoccurrence of the original disease that led to the stoma surgery
A perineal hernia – this is where the pelvic contents push their way through a weakness in the perianal wound

What are the symptoms of phantom rectum?

Every ostomate that experiences this will explain it in different ways:

An itch that won’t go away
A throbbing like an intermittent toothache but in the bottom
A hot poker that’s just sitting there
Like something has jumped up and bitten you in the bottom
Nausea and sweating as it’s happening
Comes and goes in waves

So what causes this pain?

The feeling of wanting to open your bowels may be because the nerve supply may still be intact even though the rectum was removed.

It could be that the original scar tissue has built up, become hardened and thickened, especially if the wound was slow to heal or damaged due to radiation therapy.

Nerve damage could be another reason, this could be the result of the actual surgery, an infection, radiation therapy or chemotherapy.

My personal experience

Phantom rectum for me happens on a monthly basis; it is more pronounced during my time of the month and this is most likely due to the swelling associated with menstruation. For me, it is literally an itch that can not be scratched and a twitching throbbing sensation. For me, I have literally found that by avoiding sitting down and being active and going for a walk helps me to shake it off. Sitting there makes the pain worse so exercise for me keeps the brain entertained and off of the twitching and it subsides.

My GP and surgeon prescribed nerve blockers for me and if the exercise does not work then I take my tablets and that helps.

Everyone I have spoken too in the groups have their own way of dealing with this and the most common suggestion was to sit on the toilet and pretend to go and that helped.

Phantom rectum is likened to phantom limb.

Do you experience phantom rectum? What are your go-to mechanisms to help with this? Would love to hear your suggestions!

As always

Many thanks for reading,

Louise

Louise uses our Platinum with Vitamin E range to keep her stoma site healthy. Try a sample here.

*Disclaimer*

This blog post is intended to give advice to ostomates. The information given is based on Louise’s personal experience and should not be taken as clinical advice. Each ostomates needs are unique to them and their stoma care routine. Please consult with your Stoma Care Nurse before undertaking any changes to your stoma care routine or if you are experiencing any health issues.