Being A Barbie Girl // One Year Later
Last year, I became a Barbie Girl and opened up about my proctectomy surgery. I can’t believe it’s already been a year. While most people think of the 4th of July as American Independence Day, for me, it will always be one of those life-changing days.
A Recap
On 4th July 2024, I took the next step in my IBD journey and became a “Barbie Girl”. The affectionate name in the IBD community for someone who has had proctectomy surgery. After hitting a wall with inflammation and medications failing, I managed to get a last-minute appointment thanks to an amazing hospital secretary. Despite the nerves about a major operation often ranked among the most painful, I felt reassured by the outcomes of other IBD patients.
Recovery was slow and tough. I couldn’t sit properly, I was exhausted, and the wound was always a worry. But I know I’ve made the right decision.
No Cure. Just Change
So, here we are again… more tests, more waiting, and possibly a new label.
I’m currently being tested for Crohn’s disease. For those who don’t know, Crohn’s is different to Ulcerative Colitis, even though they both sit under the IBD (Inflammatory Bowel Disease) umbrella. Having proctectomy surgery didn’t “cure” me, and honestly, it frustrates me when people say it does. Surgery removes active disease in a specific area, yes, but IBD doesn’t go away. You still deal with symptoms. And now, I have a stoma to care for on top of it all. Something that requires its own daily management.
The main reason I chose surgery was to get rid of the pain. That constant, consuming, exhausting pain. And in that way, surgery has given me huge relief. But now, my stoma is incredibly active. Even more so than when I had my loop ileostomy. That’s what’s prompted these new tests. If it is Crohn’s, I might be back on treatment. If it’s not, we’ll be looking into other possible causes. Though right now, we have no idea what those might be. I’ll keep you posted either way, it is all part of the journey!
My Barbie Year
It’s been a wild year. I thought surgery would make my anxiety vanish. It didn’t. I thought I’d bounce back with better health. Instead, low immune system = catching every bug going. I may not have gotten the car or the dreamhouse, but there have been some really good things happening. No more panic attacks. I’m back working, finding my rhythm again, and even easing into a gym routine.
There are pros and cons with every surgery and every treatment plan. One of the biggest lessons I’ve learned is that when you live with a chronic illness or disability, it will always be in the front seat. I can’t be spontaneous anymore. I have to plan ahead — for meds, for energy, for toilets. But that’s okay. I’ve always been the planner in the group anyway!
It’s a lot, well still a lot, but I’m learning that healing doesn’t look like one big moment. It’s messy, slow, and often frustrating. I’ll keep you updated on the tests and what’s next. In the meantime, thank you for following along, for the kind messages, and for just being here. It really does mean the world ????
As always, thanks for reading…
You have been very brave to make sure a huge decision and to share your journey.
It most definitley is not easy living with a chronic condition, we have to take each day as it comes and adjust as required.
Have a good weekend.
Thank you! ????