Becoming A Barbie Girl
On the 4th of July, I took the next step in my IBD Journey, becoming a Barbie Girl. In the IBD community, a Barbie Bum or Ken Bum is the affectionate nickname given to Proctectomy Surgery.
In my last IBD Journey post; Hitting A Bump In The Road. I wrote how I thought the next best course of action would be the proctectomy surgery. And this is how I came to have the surgery.
Seeing IBD Nurses & The Surgeon
I managed to get a cancellation appointment thanks to an amazing secretary at my hospital. After speaking to my surgeon, it was concluded that I would go ahead with the proctectomy surgery. This is where I would have my rectum removed, as well as a small bit of the remaining colon. And the hole left would be sewn up. It’s a huge surgery, considered the 4th most painful. I was worried but found some interesting facts when talking to my surgeon.
- What you find online via Google Images is often the worst-case scenario. Most of the patients in the pictures online are cancer patients. This is because when having a proctectomy for IBD vs Cancer, the amount taken away from the area with the rectum can be substantially smaller for IBD patients. Cancer Patients can end up having bigger sections taken away because of tumours and other complications.
- The chances of infertility are smaller than what is perceived online. Surgery complications are the top reason. Having robotic-assisted or laparoscopic surgery can minimise that. But, living with inflammation can also affect fertility.
Alongside this new surgery plan, I still needed to keep the inflammation under control. I had a lot planned over the next few months and at this time, steroids were not keeping it under control. My IBD team suggested a few biologics; Updacitinib, Filgotinib and Inflectra Infusions. I didn’t want to go onto infusions as it would take time to see if it worked. Filgotinib also takes a while to work, but responses to it were not as good as Updacitinib. Which is the one I went for.
Unfortunately, in tablet form, the medication didn’t work as it came out into my stoma bag whole 🙃.
A Week In Looe, On The Loo
I found out my medication didn’t work when in Looe.
Last year, my family had booked a week away and I was really looking forward to it. But by the time it came around, in one week, I only managed an evening out for a pub meal. The rest of the time was spent in the bathroom. It was heartbreaking to take such a huge step back. I was in so much pain, losing so much blood daily. I was at the point of trying to do the surgery myself!
Despite only experiencing one evening in Looe. It was beautiful. I cannot wait to be well enough to go back.
Missing Taylor Swift
After Looe, I upped my steroids again, praying a higher dose would mellow my symptoms. It didn’t and I missed going to Taylor Swift’s Eras Tour with my friends. I was and still am, heartbroken. I’ve been a Taylor Swift fan since her first album. Hopefully, I could be well enough to see her when she’s back in August if I can get tickets. But that isn’t looking possible with my recovery at the moment.
Getting Squeezed In & My Worst Flare Up
I got the call on the day I was supposed to be at Taylor Swift. My surgeon managed to squeeze me in on his schedule. I sobbed. I was so happy that this was all going to be over, but still so upset that I had again, missed out on so much.
When you live with a long-term chronic illness, you do get to the point where you don’t get your hopes up. After my second surgery, I had been doing so well and started to plan and do more. This last flare-up was the most difficult to control.
After speaking to my medical teams, it was clear that the stress I was under at the beginning of 2024 with work was a huge factor affecting it. It made me think back to other flare-ups and I felt a huge difference between flaring earlier in my diagnosis when I was trying to get the right cocktail of medication. To this last one when I was on no medication and in a stressful situation. It can hit home how stress can affect a chronic illness. I just never expected this flare-up to end in me needing to leave a job I loved. Let alone needing surgery to get it under control.
Day Of The Surgery
I was bricking it. Not going to lie. It was a huge surgery, which continues to have a very long recovery. There are so many unknown variables that I have to deal with. I trusted my surgeon and the team completely. But healing is down to me.
When on the ward, I was told I’d be down in the afternoon. 10 minutes later I was pulled and said I’d be going first. I am a huge wimp when it comes to needles and things that pierce or sit in the skin. I usually have numbing cream on the back of my hand and there wasn’t time for that!
The team were brilliant about the spinal block. When I had my last surgery, they put me under before putting the spinal block in and they did the same for me this time. I will say, it does run the risk of not working, but I flinch very easily. With my anxiety going in for surgery it was just the best option for me.
When I came around, I messed up a bit. Tried drinking too much too quickly and ended up being sick. I was told everything went well and I remember being very tired, groggy and, as always, wishing for my bed.
First Week Recovery
I updated my Instagram page with my daily goings as I was in the hospital for the first week. You can follow me at @HannahMarieBrankley to see. But here are some photos…
Five Weeks Later & The August Review
As you may have guessed, there is no The August Review this year. I have used some amazing products that I’ll review later in the year. At the moment, with the recovery, I cannot sit on my bum for long. It’s taken a few weeks to write this post! 😅 Balancing a laptop whilst lying on your side is difficult, to say the least.
My recovery is going very slowly. I’m very tired, in a bit of pain and a proctectomy wound is one of the hardest and slowest to heal. It’s also very hard to check the area! I’ll be seeing a nurse next week so I’ll hopefully have more of an update for you soon.
Although it’s been frustrating, I know I’ve made the right decision. I cannot wait to recover and start living my life as a “Barbie Girl”.
As always, thanks for reading…