Ok, so Barbie Bum isn’t the correct medical term, it’s the outcome of Protectomy surgery (removal of the rectum and anus) and it’s commonly called this as when these are removed the site is closed up surgically! This would be my next step if I was to have a permanent stoma.
However, there is another option, the J-Pouch (or more commonly known as A proctocolectomy with ileal pouch-anal anastomosis) which involves constructing a ‘pouch’ using the small intestine in my case, which will attach to my rectum which is still intact and perform as a working bowel. With this option my stoma would be reversed and I would use the toilet as normal again.
So there’s my two options for my future, but it’s not as easy as just picking to get to get rid of my bag. Both options have their pro’s and con’s and it’s each individuals person preference!
For example, the J-Pouch, due to invasive surgery in the lower abdomen has a risk of fertility issues, increased number of stools a day, urgency, diarrhoea. These risks for me are not worth it and my stoma has became a part of me, currently my decision would be to make my stoma permanent and have my rectum and anus removed, but this may not be the case for all.
The lovely Nicola and Donna have both shared with me their stories about the path they went down to give me some support for my future and spread awareness to others who may also need help in their decision.
Nicola – Hello everyone, my name is Nicola Rowson and I have Ulcerative Colitis. I am a single mum to my 9 year old daughter who has fought battles with anxiety since my diagnosis and hospitalizations. I unfortunately had to leave my previous employment due to the amount of time off that was needed due to my surgeries. I enjoy going to the gym when able to, baking too, also building the local support network is a big passion for me. I was first given the diagnosis of Ulcerative Colitis in 2013.
Donna – My name is Donna Cusack. I’m am a 41 year old veterinary care assistant from Belfast. In 2016 I was admitted to hospital and diagnosed with sudden onset ulcerative colitis and a couple of weeks later when medication didn’t work I had a total colectomy with a temporary ileostomy.
What operations did you go through to get to where you are now?
Nicola – On my journey, I have had a total of 4 surgeries. My first one was a laproscopic subtotal colectomy in which my large intestine was removed, the end of my small bowel brought through my abdomen to create my stoma, and at this point my rectal stump was left in tact. Due to complications arising from this surgery I then had to have incision and drainage of a peristomal collection with refashioning of the stoma. Some time after, I started experiencing issues with my stoma and my rectal stump was causing issues at this point too. I transfered care to Newcastle for my last surgery and had a completion proctectomy with revision of ileostomy to the left and hernia repair. My barbie butt was formed.
Donna – (Post Ileostomy Surgery) Over the next 3 years I had a further 2 surgeries to create and takedown my j pouch.
What was your operation recovery like or are you still recovering?
Nicola – Recovery from the completion protectomy wasn’t half as bad as what I was expecting to be totally honest with you, I was out of hospital in a week. It was uncomfortable more than actually being painful. Taking it slow and steady was the main priority and slowly easing myself into sitting down onto a soft padded cushion and a few extras for the height. Overall recovery probably took me about 6-8 weeks and by this point I could sit down comfortably, move around easily and I was all healed up nicely.
Donna – I thought my 1st surgery was bad because I was so ill prior and was in hospital for 5 weeks after with complications and sepsis and had 8 months off work but step 2 was way worse! I was in hospital for several weeks with complications and 5 months off work.
Do you have any symptoms now?
Nicola – I sometimes experience phantom rectum pain where I feel like I need to sit on the toilet, but this usually passes pretty quickly and doesn’t happen very often. My main symptoms to date are still from UC in general with bad fatigue and occasional stomach cramps. I have also experienced the occasional blockage of my stoma, but thankfully these have eventually passed at home.
Donna – I suffer with inflammation in my pouch if I eat foods that don’t agree with me and night time incontinence is a factor. I can’t eat all the foods I could with my ileostomy but overall I have no regrets and would never want the bag back for me personally.
How is your life now with a barbie bum/ J-Pouch compared to before?
Nicola – Life at present is so much better than my life had been previously. I finally have the freedom to enjoy myself without constant worry, and be the parent I couldn’t be beforehand.
Donna – J pouch life is a whole new set of problems than when I had my bag. I despised my bag mentally and it gave me lots of body confidence issues and skin issues which is why I opted for j pouch surgery over a bag for life. But I felt physically healthier with my bag than I do with my j pouch.
What is your biggest advice for someone who goes down either a J-Pouch or a Barbie Bum route?
Nicola – My biggest piece of advice to anyone facing barbie butt surgery is,that yes it can take an emotional toll on you and can make you feel a little self conscious (I mean how do you tell someone you have no real bum) but your health is your number one priority so you do what you’ve got to do for you and recovery is only temporary. It will pass and life will carry on.
Donna – My biggest piece of advice for anyone wanting to make the transition from stoma to j pouch is to be prepared for a bumpy road. No two j pouches are the same and you have to find what works for you. You need to have a lot of patience and make a lot of sacrifices physically and with regards to diet. In my opinion if you are 100% happy with a bag and have no issues then I wouldn’t put yourself through getting a j pouch as it can be unpredictable and there are no guarantees with it.
You can follow both Nicola and Donnas stories on their instagram pages linked below!