Barbie Butt: My Experience and Tips & Tricks

Hello all, I hope you’re keeping okay! Today I’m going to chat a little about my experience of having Barbie Butt surgery as well as some tips and tricks that I’ve learned over the years for those who have or, might be facing Barbie Butt surgery as well as those who might just be curious!

My experience

To simply put it, proctectomy surgery, otherwise known as ‘Barbie Butt’ surgery is where your rectum and anus are removed and sewn up permanently. This surgery may occur for a number of reasons but in my case, following my initial surgery in 2017, to create a temporary ileostomy, although I was now pooing out of my stoma (part of my colon pulled through the wall of my stomach), they left my rectum & anus intact in case I were able to have a future surgery to reconnect my remaining colon with rectum to form what is called a Jpouch meaning that I would poo ‘normally’ again. Alternatively, I’d need proctectomy surgery at some point to make my stoma permanent due to the risks associated with leaving that dormant rectum in place for a number of years – without going into too much detail and off on a tangent, each surgery has its ‘pros’ and ‘cons’ so to speak and this is a hugely personal decision to make for each individual (If anyone would like to chat to me further about this, my Inbox is always open @ambersostomy ).

Anyway, in the months following my initial surgery, I didn’t give either of these options much thought and was concentrating on recovering from and adapting to the first. In this time, I was experiencing worsening problems with that remaining rectum very similar to when I had my colon (minus the poo of course) with lots of cramps and urgency to visit the bathroom to release blood and mucus. While my stoma was great and I had no problems with that side of things, my UC was still very much active in my rectum which led me down a very similar path in terms of trial and error treatments, hospital admissions etc as to prior to my initial surgery. I won’t lie, I was pretty frustrated by this. I was led to believe that once my colon had been removed, then I’d no longer experience these issues. I was finally sitting my A Levels and applying to University (already a year behind my peers as a result of my initial surgery). So, again, I very much just got on with it, kept it quiet and put up with it despite none of the treatments working to get a hold of my symptoms, feeling worse and worse and experiencing multiple accidents.

Then, I just remember being in hospital for treatment (again) because it had got so extreme (I was frequently passing out on the toilet having lost so much blood from my back passage but, nevertheless, I just thought it would be the case of hooking up to an IV for a few days). Both my gastro doctor and surgeon visited my bedside and explained that we’d come to the end of the road (again) and that I’d either need to start considering unlicensed treatments from other countries or, stay in for either the JPouch or Proctectomy surgery. I was extremely overwhelmed at this point, I thought that I’d have a lot more time to consider these things…

Anyway, this post isn’t about me making that decision but, I gave the unlicensed treatments route a go for a few weeks (as hopeful as ever) before having to have an emergency proctectomy (Barbie Butt surgery) to remove my rectum and make my stoma permanent.

Have I had any complications?

On the whole, my experience with a Barbie Butt post-recovery has been good. I definitely underestimated the procedure itself and assumed it would be easier than the initial stoma surgery recovery (I understand that no surgery is easy) paired with being adamant on moving away to UNI in the September (I had the surgery in the May), I pushed myself a bit too much by rushing back into things post-surgery and developed some problems with my back passage wound during recovery which led to needing daily treatment and packing for a few months. After this, I realised the importance of rest and that certain run, experience, workout or walk would still be there once I’d recovered properly and that there’s no rush, healing is most precious.

The only other complication I’ve had was last year when I took my first long haul flight since having my proctectomy, to America. I’m pretty sure it was due to being sat in a particular position for such a long time with little movement and the same chair – I developed a little abscess on my wound site which was pretty infected and uncomfortable. This led to another spell of wound packing, rest and healing. It’s probably also worth noting here that when it came to flying home, I was really uncomfortable and worried about it worsening so, I just mentioned it to a flight attendant when checking in to see if there was a possibility to move to an aisle seat where I could at least get up a little more frequently – they (British Airways) were extremely understanding and helpful and actually upgraded my family and me to business class so that I could lie on my side for pretty much the duration of the flight which was extremely helpful! Moral of the story – try not to shy away from asking for help if you need it wherever that may be!

Since I have been on longer trips and the wound has been absolutely fine – I’ve tried to get up and stretch my legs as much as possible, wear cool clothes so that the area stays as dry and cool as possible and change up my seating position as well as what I’ve been sitting on as frequently as possible.

Tips & Tricks

Pre-operatively:

– Speak to and get advice from as many people as you can!! In that short spell that I was trialling those unlicensed treatments and losing hope, I made a conscious effort to speak to and get advice from as many different people as possible whether that be healthcare professionals or, other patients who’d been through something similar to gain as much perspective as possible for the JPouch vs Barbie Butt. Although I didn’t have much choice in the end, this was so so helpful in helping me learn and get my head around it all.
– Comfort is key! Get yourself lots of comfy bottom halves whether that be opting for underwear that is slightly comfier and sizing up a couple of sizes, getting some loose and light pyjama bottoms or perhaps opting for joggers for a short while.

Post-operatively:

– I read a lot about various cushions and best seating positions but, the best thing I found was a specific pressure wound blow-up style cushion that was provided by my local district nurse.
– Postoperatively, I tried to get up and about for strolls as much as possible but it was a really fine balance between doing my body good / enjoying being up and about and screwing myself over for the next day / in long run. I’d say, always do a bit less than you think or feel like you can rather doing that and more even if it feels good at the time (very much easier said than done, I understand!).
– Although I already had a selection of ostomy appropriate and comfortable underwear, I found that specifics that are maybe too tight or made of certain materials are uncomfortable on my Barbie butt particularly if I’m sat for a long time or working out. I’ve found that high waisted, Brazilian style knickers made of silky material are the perfect balance between being comfortable, supporting my stoma and looking nice.
– If I’m sitting for long periods of time, my wound can occasionally feel a little uncomfortable or tight so, I try to make sure I get up for a stroll at some point for example if I’m sat at my desk all day whether that’s to go and get a coffee, taking the stairs instead of the lift or walking the long way to the toilet.
– Leading on from the previous, for my last few months of UNI (pre-covid) I took a little cute cushion in to leave on my chair to make it that little bit more comfortable. This is something that in my mind, I was so worried about in case someone questioned it, what would I say? I’ve had my bum sewn up and these chairs make it feel sore?… In reality, nobody once questioned or mentioned it, I had nothing to be so worried about (and, I was a lot comfier!).
– When travelling, I apply the same rule; I try and take something comfy to sit on (one of the travel neck pillows can work well!) and also try and get up as much as I can. I know easier said than done but it can be really useful to try and lie on your side where possible to take some pressure off too.
– Occasionally, still, I get the sensation of needing to go to the toilet properly with a dull pressure in my bum and stomach cramp (I’m pretty sure this is called phantom rectum) so, I go to the toilet and just sit there for a few minutes and it tends to pass.
– You know your body best – what I’d say is that if you have a slight inkling that something might be off, don’t hesitate to get some advice.

I hope this has helped in some way and as I mentioned previously, I understand how much of a big deal this surgery can be so am more than happy to chat to anybody who has any further questions.

Amber x

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*Disclaimer*

The information given is based on Amber’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.