Barbie bum? It almost sounds comical like a cosmetic surgery. Unfortunately it’s not a sought after procedure. A barbie bum is the colloquial way of describing not having a rectum or anus. Yes, I know you probably winced reading that it’s possible to live with out a rectum and bum hole. I had my rectum and anus removed just over a year ago. I’ve had many major and life saving surgeries but I’ve got to say the proctectomy (removal of rectum and anus) was just as painful as it sounds. You use your bottom more than you realise you use it to stand, sit, kneel, lie and walk amongst other things. As I had already lost my colon (large bowel) and have a functioning ileostomy it was decided my ileostomy couldn’t be reversed due damage to organs and paralysis of the small bowel. Plus, I was happy to keep my stoma as it has become second nature. If I’m completely honest with you I’ve forgotten what it’s like to fart and poo, although I’d love to be able to sit on the toilet and mess about on my phone to get 5 mins peace it only takes 30seconds to wee and empty my stoma bag. Due to my genetic disease my rectum and anus was yet again was turning cancerous and I had developed colitis so I was happy to agree to the surgery. Although I was very anxious and apprehensive as I was making a decision that was final, once the rectum is gone it’s gone and can’t reversed or transplanted back if I changed my mind at a later date. It also meant my stoma would be my life long friend and made permanent.
The surgery it’s self took 10 hours as when my abdomen was opened up, the surgeons discovered my tumours, the tumours had been wrapping around my small bowel and cut off the blood supply to where my stoma was. So before they got to the rectum there was complications. To access the rectum they have to go through the abdomen, which means pushing aside organs and taking out the bladder temporarily. Once the rectum has been removed the attention is the drawn to the anus. The anus is then removed and the surrounding membranes. All that is left is a cavity, some surgeons choose to sew the cavity up, meaning stitching together the inner of the two bum cheeks. Other surgeons choose the leave the cavity open but use something called a vac dressing, this is a device which uses suction to heal the wound. My surgeons choose to stitch my bum cheeks together. Waking up was terrifying, I was overcome with intense pain which was indescribable. Panic ridden as I’d had an epidural before I was anaesthetised, so I wondered why it was so painful. Luckily I had an amazing anaesthetist who picked up on my distress. He explained that since I now don’t have a rectum or an anus it was going to be difficult to control the pain, the nerves and muscle damaged, it would take time for my brain to interpret the signals and re-wiring. So he immediately prescribed heavy duty drugs to help such as ketamine PRN, fentanyl epidural and a fentanyl pain pump which I could control and press when needed. I was kept in the surgical high dependency for 10 days. After having major surgery it’s like being on a rollercoaster physically and emotionally. You can peak and fall many times hour to hour.
The first things I can remember when I’d come round and stabilised was this intense feeling of tightness and crushing in my abdomen and where my anus would have been. It was tough because the pain didn’t gradually get better, it got worse first! The pain team explained this was unfortunately normal due to the nerve damage. Once my pain medication was increased and I was made comfortable, I was able to mobilise myself around the bed. Day by day I’d set my self challenges, one day I’d plan to walk 5 steps, the next day stand up independently. Although, I couldn’t sit directly on my bottom or sit out in the chair. When standing I felt like a magnet was pulling me through the floor. I hobbled bent over but I was trying. Mentally I wanted to give up, I felt like I was learning how to do everything again. Frustrated because I needed so much input to do the basic things. Couldn’t even wash my own private parts.
Once I was in a better place mentally I was intrigued to see what my new designer bum looked like. Sat with my mum and Greg we was all nervous what we’d find. They were more worried about what my reaction would be. Yes, it was very gory something like a horror story but at the same time I was amazed it was beautiful at the same time. A stitched up rectal cavity is never going to be pretty but I was amazed how they had took the skin graft from my stomach and filled the gap. It took weeks for my body to start to accept the graft. It was impossible to try to keep the graft dry as your bum crack is a moist area. Back on the surgical ward my recovery had come to a halt, here I was finally told about my tumours. Finding this out made me want to quit, I felt let down and deceived by the staff and loss faith. As a result my graft started breaking down and holes appearing and infection occurring. Meaning strict wound care and it needing packing. It was decided that it was not in my best interest to remain in hospital and to be discharged to the care of the district nurses who would visit twice a day
The whole experience caused my depression to flare, I was in so much physical pain and months later I was still struggling to do the most basic things. Due to the bladder being moved during the surgery I developed urine incontinance and had to wear adult nappies, but the urine just broke down the wound and was a vicious cycle, every time the graft nearly healed it would breakdown. It made me feel so uncomfortable, struggled to walk and do stairs as it felt so tight and as if it was pulling. My stoma would leak and run into my wounds on my abdomen. When resting I couldn’t get comfortable as I couldn’t sit or lie down as the pain was unbearable. More scars and war wounds, physically and mentally. My partner was the light at the end of the tunnel, everyday he helped me get by and gave me the confidence that things would get better. He helped me take it one day at a time and fight my demons, we did it together. He understood my black fog and helped me realise that I wasn’t abnormal, I was just working through some big changes and anyone in my position would struggle. My depression made me feel like it was my fault I wasn’t healing and I was being punished and I wasn’t strong enough to comprehend my physical changes.
Things have improved but due to the complications of the surgery and the aggressive nature of my tumours I’ve not made a full recovery. I’m not where I’d like to be, the surgery was supposed to be my final stage to achieve normality but instead I’m further away from that goal. I’m still weak, my mobility is the worst it’s ever been and as a result require a wheelchair most days, my pain requires heavy duty opiates to make me comfortable and my depression likes to test me. My barbie bum looks like an extension of my vagina, mades me chuckle looks more like a designer vagina rather than a barbie bum! Sex is very difficult, we were pre warned that things would change down below but only minor irritation due to vaginal dryness. However, I wasn’t made aware that when the rectum is removed it affects the structure of the vagina. As it has no support the vagina can slip backwards causing a prolapse, this is what happened to me. Unfortunately a hole has appeared between my vagina and the barbie bum this is called a fistula. Waiting to see a gynaecologist for a consultation.Despite my current disabilities I’m still head strong and fighting towards my goal to regain my quality of life. I’ll never be the Robyn I was before the operation back in October last year and I’ve accepted that but that’s made me more resilient.