BARBIE BUTTS

Making the decision to have proctectomy surgery can be life-changing.

Commonly referred to as a Barbie bu , the surgery involves removing the rectum and anus and sewing them up permanently. O en made when a colostomy or ileostomy reversal isn’t viable or the best option, it can be a hard choice to make, but for people with conditions like Crohn’s and colitis, it can also be a lifeline.

Decision

Emily was diagnosed with Ulcerative Colitis in 2015 and quickly had to start taking a host of medications whilst spending time in and out of hospital. A er first ge ing a stoma around six years ago, Emily then made the decision to undergo proctectomy surgery.

“At my worst point I was on 30 tablets a day and having infusions at the hospital, I had tried loads of di erent things and nothing really worked, I went in for a routine procedure and I didn’t come out of hospital,” remembers Emily. “They did my surgery to have my stoma in 2017, but I only agreed to it if I could have it reversed. Five years later, it didn’t get reversed: I had everything taken out and sewn up.

“In those five years I still su ered with my colitis even though I had my large intestines out, I still bled and was in pain, just not as bad as before, so that’s why I made the decision.”

Unlike Emily, Rhianne had a separate procedure before deciding to have Barbie bu surgery which results in a permanent stoma. Rhianne was diagnosed with a genetic condition called Familial Adenomatous Polyposis (FAP) in 2010 which causes polyps to grow in the colon and comes with a high risk of developing colorectal cancer.

“They did a complete colectomy at first, so they took out my colon and le me with a J-pouch,” recalls Rhianne. A J-pouch is when the end of the small intestine is shaped into a pocket to store and pass stool. “I had the J-pouch for about 10 years but then it started to fail, plus polyps started to grow again.

“There were three options: have the polyps taken away, have the pouch remade which has quite a high failure rate, or go for the stoma and a Barbie bu .”

Last August, Emily and Rhianne met a er they both started a ending the same local support groups, BOTS, which stands for bums on tums, and quickly became best friends. Emily had her operation just weeks before in July, while Rhianne had hers during April 2022.

“You get a lot of weird looks when you say Barbie bu ,” laughs Rhianne. “If you’re using the medical terms all of the time it’s nice to be able to use so er words to talk about it.”

Experience

A Barbie bu can’t be reversed, and with this in mind, both Emily and Rhianne did extensive research before agreeing to the procedure.

“It took me about four years to come to a decision,” admits Emily. “I made sure I spoke to a lot of people who had been through it.”

Rhianne found that there wasn’t much out there to tell her exactly what would happen, and o en, hospitals have contrasting approaches to the surgery.

“Every surgeon does it di erently in how they sew you up or how they treat you a er it, so you never got that concrete idea of what would happen” explains Rhianne.

A er having the surgery, they both had a positive experience with few issues during the recovery process. Emily was up walking around the ward the next day, while Rhianne didn’t experience much discomfort until her scar tissue started to tighten months later. When things were tough, having each other to lean on meant there was always someone to speak to.

“You can do anything you did before, you just have to take a li le bit more caution,” advises Emily. “I probably do more now than I did before because I was so poorly before it.”

As well as working, Emily volunteers with Colostomy UK, the Ileostomy Association, and Crohn’s and Colitis UK.

“Sometimes it feels a bit tighter in that area but there’s nothing that stops me from doing anything,” adds Rhianne. “Having the Barbie bu has enabled me to live life again rather than being constantly worried about what’s going on, ge ing to a toilet, constantly being in discomfort.”

Finding Support

When the duo joined the BOTS support group, they were by far the youngest people there, and a er struggling to find information in the lead up to their own surgeries, they decided to take action.

“We wanted to be there for the young people in our area because they can’t always a end meetings if they’re working,” reveals Emily. “We also wanted to put some positive stu out there because it’s not always that bad.”

Emily and Rhianne first set up a support group on Facebook for people in their local area, The Stoma Girls, and then they started to think about the next steps and decided to start a podcast of the same name. So far, the episodes have focussed on what lead to their stomas; operations and the early days of recovery; leaks; food and drink; and of course, Barbie bu s.

“We’re still small and it’s early days, but it’s going well so far and everyone has been really positive about it,” shares Emily.

Their audience may be small right now, but the impact on individuals is big. Through the Facebook group, one woman realised she could get more products on prescription than she initially thought.

“People finding out there’s things accessible to them just by us talking or posting about it, it feels good because you’re helping someone,” adds Rhianne.

Advice

Emily and Rhianne have built up an arsenal of advice to share with people who are currently considering the surgery or are in the recovery stage.

“My top tip for healing if you’re a lady is when you go to the toilet and urinate, you’re urinating on all your dressings down there which doesn’t help and it stings your wounds, so get a Shewee, they are the best thing ever,” emphasises Emily.

Emily also recommends using a foam cushion during recovery, wearing elasticated, high-waisted trousers that work with a stoma, and using reusable bed pads to protect your ma ress from any leaks. Above anything else, their advice is to reach out for help and support every time you need it.

“One thing I did was take each day as it comes, don’t think about the end goal,” o ers Rhianne. “If you have any concerns make sure you go and get help, it can be scary if you feel alone.”

Armed with their experiences, The Stoma Girls want to make one thing clear: it does get be er, and this experience can be positive.

For More Information

The Stoma Girls podcast is available via Spotify, or search The Stoma Girls on Facebook to join the support group.

To access support and advice, contact specialist organisations:

Colostomy UK www.colostomyuk.org

0800 328 4257

Ileostomy and Internal Pouch Association www.iasupport.org

Crohn’s and Colitis UK www.crohnsandcolitis.org.uk

0300 222 5700 thechildrenstrust.org.uk/bumps-happen

Most children and young people make a full recovery after a head injury, however, some experience longer-term difficulties.

That’s where our website can help.

Bumps Happen is an online resource for parents and carers. If your child has had a head injury, or you’d just like to know more, visit Bumps Happen for help and guidance.

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