Meet Rachel Carthy—known online as @ibdjourney—a fierce, funny, and refreshingly honest woman who’s walked the rollercoaster path of Crohn’s disease, multiple surgeries to living with a stoma. In this raw and real account, Rachel opens up about everything from her teenage diagnosis and brutal flare-ups, to navigating double stomas, permanent surgery, and becoming a mum with a Barbie butt (yes, really!).
If you’re a woman facing stoma surgery, young or old—or struggling to adjust to life with one—this story is for you. Rachel doesn’t sugarcoat the hard stuff, but she does show you what’s possible when you face it all with grit, humour, and a strong sense of self-worth.
You’ll learn what to expect from surgery and recovery, how to handle the practical (and emotional) side of stoma life, and most importantly—you’ll discover that your stoma doesn’t get the final say in your story. You do.
But I will let Rachel tell you the rest…
Living With A Stoma: The Doctor Google’s’ Rabbit Hole
I always imagine how bloody hard it must’ve been for people having these kinds of surgeries back in the 60s, 70s, 80s—heck, even the 90s—when there was no internet or online community to turn to. When I had my first surgery, even then there wasn’t nearly as much out there as there is now. Honestly? I was clueless about stomas. I had Crohn’s and couldn’t have even told you what a stoma was until I had to face it myself.
I’m one of those people who avoids Googling things unless it’s 100% necessary. You know, the kind of person who looks up “headache” and suddenly thinks they’ve got 12 minutes to live? That was me. I didn’t want to go down the rabbit hole of surgical outcomes unless I had to.
Getting Diagnosed with Crohn’s as a Teen
Before I was officially diagnosed, I started having symptoms as a teen—rushing to the loo, accidents I didn’t quite make in time, blood, mucus — you name it. At first, my GP thought it was something like an abscess. It took ages to get properly diagnosed with IBD. Initially, they called it ulcerative colitis. But by 18, we knew it was Crohn’s, and I started on medication.
That was a tough time. I was finishing school, doing A-levels, preparing for uni… trying to keep it together. I didn’t have surgery straight away—just lots of investigations and years of flare-ups followed by remissions. I tried different meds, including steroids (which help but come with nasty side effects). Still, through all of it, I thought I was lucky. I hadn’t needed surgery.
I’d talk to people online who’d had 15 surgeries to remove sections of their bowel, and I just felt so much empathy. It’s major stuff, and it made me feel grateful that medication was enough—for a while.
When Surgery for Crohn’s Becomes the Only Option
One day it just hit me. A flare-up so severe nothing helped. I tried biologics through IV—no joy. I’d exhausted the medication route. I was so ill the choice was taken out of my hands. I had to have surgery. In some ways, that made it easier. I didn’t have to agonise over the decision, I just had to accept and process it for what it was.
Living With My First Stoma: Life with a Loop Ileostomy
In March 2015, I had my first surgery—a loop ileostomy. That meant managing a very large stoma with two openings (yep, double parked), one for stool and one for mucus. They were huge. I actually kept one of the unused bags to remember the size—I look at it now and wonder how the hell I managed.
That phase was brutal. I still had my colon and rectum, so Crohn’s symptoms continued. Blood, mucus… the works. I was learning how to live with not just a stoma, but everything else still going wrong. My poor parents were watching me suffer, seeing the stoma wasn’t helping like we hoped. It was hard.
Living With A Permanent Stoma Surgery and the “Barbie Butt”
Two years later, I had my permanent stoma—a pan-proctocolectomy, which means everything came out: colon, rectum, anus. Gone. Sewn up. No going back.
In the IBD world, they call it a “Barbie butt” (or “Ken butt”)—you’ve got no bum hole. That little bit of humour lightens the load, and I love that about our community.
The second surgery, despite being bigger, was actually easier in some ways. My stoma was smaller (hallelujah!) and I wasn’t dealing with the nasty Crohn’s symptoms anymore. Recovery was longer, especially with the sewn-up backside. I had to use pressure cushions, lie on my side more, take care… but my healing was amazing. Super neat, no complications. I was so relieved.
Living with a Stoma and Becoming a Mum
At the time, fertility came up. Luke and I hadn’t started a family, and abdominal surgery can affect that. But honestly? I was too unwell to even consider pregnancy. My body wasn’t a safe place for a baby. My health came first.
And when we were ready? I got pregnant straight away. No IVF, no delay. Our son Jack is two now and thriving—and pregnancy with a stoma was fine. A few logistical stoma-bag-under-the-bump things, but no big issues. I even planned for a natural birth, but ended up with an emergency C-section (which you can have with a stoma, by the way). And wow, the C-section scar! I still stare at it thinking, “How did a whole baby come out of that tiny thing?”
Both my stoma surgeries were laparoscopic—keyhole—which means minimal scarring. The C-section is my most visible scar now. I didn’t even realise until recently that C-section scars can be vertical or horizontal. You learn so much going through all this.
Living with a Stoma Day-to-Day
When I think back to my double stoma—yeah, that was wild. One was the actual stoma, and one was a mucous fistula. That thing was leaky. I remember being at a wedding in Cyprus and spending half the night sitting on the loo, letting it drain before bagging it again. Not glamorous. But once I got my permanent stoma, it honestly felt like a relief. It was so much more manageable.
Since then, I’ve been off all Crohn’s medication (touch wood!). My disease is in remission. I know that could change—Crohn’s can affect your entire digestive system—but right now, I’m good. And if I ever need a “refashioning” surgery? I’ll deal with it. Nothing will be as dark as my worst Crohn’s days. I’d take more surgery any day over that.
Here’s the thing: I don’t let my stoma rule my life. It’s a tiny part of me—physically and mentally. If I have a leak before heading out, I just change my bag and move on. My friends know. I’m honest. I’m practical. And I keep going. Always.
Rachel’s advice for anyone facing life with a stoma:
You are more than your stoma
It doesn’t define you, and it certainly doesn’t stop you from living a beautiful life.
Expect trial and error
Getting the right products and routine takes time. Leaks happen. But there’s always a solution.
Talk to people who have been there
I spoke to someone who’d had the same surgery and learned he was in and out in a week. That gave me a goal, I visualised it and did the work every day to get stronger, even when it was tiny movements in the ward, I did them—and I hit it! I was home on Friday, eating a Chinese on my sofa with Luke and my mum.
Set goals
Even if it’s walking to the toilet or around the block. Baby steps are everything.
Don’t compare your journey
Your path is yours. Your healing is yours. Celebrate your wins, even the tiny ones, they all add up.
And lastly, live your damn life.
Adjust where you need to, but never let it stop you. Whether it’s gym workouts, weddings, babies, or holidays—you can do it all. Maybe with a few tweaks and a spare bag in your purse—but you can.
I’ve been through hell and come out with a stoma, a son, and a strong-as-hell mindset. It’s a shit time, yeah. But it’s not a shit life.
Final Thoughts
Rachel’s journey is nothing short of inspiring. She’s faced the darkest days of Crohn’s disease, dealt with surgeries that would make most people crumble, and still came out the other side laughing, thriving, and holding her baby boy.
For any woman worried that a stoma might take something away from her—her beauty, her confidence, her future—Rachel is living proof that it can actually give you your life back. Her story is a reminder that strength doesn’t mean pretending it’s all easy. It means showing up, finding your tools, asking for help, and believing that this bump in the road doesn’t define you.
A stoma might change your body—but it will never limit your power, your joy, or your future. Keep going. Keep growing. You’ve got this.
Share Your Story — Help Someone Else Heal
Are you a woman who’s been through surgery, trauma, or scarring — and come out the other side?
You don’t have to be “fully healed” to share your journey. You just need a voice — and the courage to use it.
Your story can help someone else feel seen. It can show another woman that she’s not alone, that healing is possible, and that scars can be beautiful too.
Want to share your Scarred and Fabulous story?
Fill out the form below and I will be in touch 🩷If you want to remain anonymous, that’s totally fine, doesn’t mean your stories aren’t worth telling.
p.s If you want to keep up with the amazing Rachel Carthy, you can find her shining her light @ibdjourney
