Barbie Bum Surgery UK: Recovery, Sitting Down and Life With a Permanent Stoma

What is Barbie bum surgery?

"Barbie bum" is the nickname people in the stoma community use for an operation that removes the rectum and the anus and then closes the skin over where the bottom opening was. The bottom is left smooth, like a doll, which is where the name comes from.

In hospital you will hear the medical names instead. The most common ones are:

• Proctectomy: removing the rectum. When the anus is also removed and closed, your surgeon may call it a completion proctectomy or an intersphincteric proctectomy.
• Panproctocolectomy: removing the whole large bowel, the rectum and the anus in one operation, usually leaving a permanent end ileostomy.
• Abdominoperineal resection (APR): the operation for some low rectal or anal cancers, which leaves a permanent colostomy.

Whatever it is called, the result is the same in daily life: you no longer use your bottom to go to the toilet, and your stoma is permanent. Many people have already been living with an ileostomy or colostomy for months or years before this second operation, and for them it is the final step. If you are still getting to know the words, our plain-English guide to stoma words helps.

Why do people have Barbie bum surgery?

The operation is only offered when keeping the rectum is no longer a good option. The usual reasons in the UK are:

• Ulcerative colitis: after the colon has been removed, the remaining rectal stump can keep bleeding or producing mucus, and some people choose to have it removed.
• Crohn's disease affecting the rectum or the anus, especially with fistulas or abscesses that keep coming back.
• Rectal or anal cancer that sits too low for the bowel to be joined back together.
• A rectum that has been left in place but causes ongoing discharge, pain or inflammation, sometimes called diversion proctitis.

Many people say that the decision took longer than the recovery. It is a permanent step, and you are entitled to take your time, ask for a second consultation and speak to your stoma nurse and to people who have had it done. Associations such as Crohn's & Colitis UK and the ia (Ileostomy and Internal Pouch Association) can put you in touch with others.

Barbie bum surgery recovery: what to expect

There are two wounds to heal: the one on your tummy, if it was open surgery, and the perineal wound, which is the closed skin where your bottom was. The perineal wound is the one that decides how quickly you get back to normal.

1. In hospital

   Usually around 4 to 7 days, sometimes longer. You will be up and walking early, and the nurses will check the wound and teach you how to look after it.

2. Weeks 1–2 at home

   Rest, short walks and lying down more than sitting. Many people have a district or community nurse visit to check or dress the wound.

3. Weeks 3–6

   The wound gets stronger and sitting becomes easier, a little more each day. No heavy lifting.

4. Weeks 6–12

   For most people the perineal wound has healed by now. Driving, desk work and gentle exercise are usually back, but check with your team first.

For some people the wound takes longer to heal, especially after radiotherapy or with Crohn's disease. That is a known part of this surgery, not a failure on your part, and your team has treatments to help it close. Tell them straight away if the wound becomes red, hot, swollen, smells or leaks fluid, or if you have a temperature.

Sitting down after Barbie bum surgery

Sitting is the part people ask about most, because it is uncomfortable for the first weeks. What helps:

• Lie down or recline more than you sit at first, and stand up every 20–30 minutes.
• A cushion. Many people use a soft or memory foam cushion. Ask your team which shape they recommend, because a ring cushion is not right for every wound.
• Sit with your weight a little forward on your thighs rather than straight down on the wound.
• Loose, soft clothes with no seams pressing on the wound: joggers, wide trousers, soft cotton knickers or boxers.
• Plan the car. Short journeys first, with a cushion. You should not drive until you can do an emergency stop without pain, and your insurer may ask what your doctor said.

Some people feel a "phantom rectum" for months, as if they need to go to the toilet the old way. It is common and harmless and usually fades with time.

Life after Barbie bum surgery

Once the wound has healed, most people say life is simpler. There are no more trips to the toilet with a rectal stump, no more discharge, and the stoma just does its job.

• Work: desk jobs often after 6–8 weeks, physical jobs later. Your GP can give you a fit note, and your employer has to make reasonable adjustments. See our guide to working with a stoma in the UK.
• Exercise: walking from the start, then gradually more. Cycling and horse riding put pressure on the area, so they usually come last. Our guide to exercise with a stoma has the details.
• Sex: this operation can change sensation and, for some, erections or vaginal dryness. Talking to your team about it is normal, and there are good treatments. See sex and a stoma.
• Benefits and prescriptions: a permanent stoma gives you free prescriptions in England with a medical exemption certificate, and they are free anyway in Scotland, Wales and Northern Ireland. There is more in is a stoma a disability in the UK.

What to wear while you heal

Soft and high-waisted is the rule for the first weeks. A waistband that sits above your stoma and away from the wound is more comfortable than one that cuts across either. Many people live in loungewear at first, then go back to their usual clothes with a soft stoma wrap or high-waisted stoma clothing that holds the bag flat.

Barbie bum surgery: your questions