World IBD Day 2026 // Do I Still Have IBD?
Today marks my 12th year recognising World IBD Day whilst living with IBD… but this year, I found myself asking a question I never thought I would.
Do I actually still have IBD?
I’m now three surgeries down. My Ulcerative Colitis is no longer active, mainly because I’ve had everything from the ileum down removed, and now live with a stoma. The organs the disease would mainly attack are gone. There’s nowhere left for my Ulcerative Colitis to flare in the way it once did.
So where does that leave me? Am I someone who had IBD? Or am I still someone living with it?
It’s something I’ve been pondering a lot lately, because IBD is so much more than “just a bowel disease”.
Why I Now Have a Stoma
Having a stoma was never something I rushed into. In fact, surgery came after years of trying almost everything else first.
Medication after medication stopped working, failed completely, or only helped temporarily before things spiralled again. My life became a cycle of hospital appointments, flare-ups, steroids, exhaustion and trying to survive each day rather than actually living it.
The reality was that I had no quality of life left.
I was in daily immense pain. The kind of pain that drains you physically and mentally. Simple things became difficult. Like reading a book. Leaving the house became difficult. Even resting didn’t feel restful because my body was constantly fighting itself.
Eventually, surgery stopped being a scary “last resort” and became the only path left that offered any chance at getting parts of my life back.
Living with a stoma hasn’t magically fixed everything, and it definitely isn’t an easy route, but it gave me something I hadn’t had in a very long time: relief.
IBD Doesn’t Just Affect the Bowels
One thing I think many people outside of the IBD community don’t realise is that inflammatory bowel disease doesn’t just affect your digestive system.
Even though Ulcerative Colitis is centred in the bowel, inflammation can affect the entire body.
Inflammation linked to Ulcerative Colitis can affect the joints, skin, eyes, liver, bones, mouth and even increase the risk of blood clots. Long-term steroid use can also leave lasting effects on the body, particularly around bone health and joint pain.
Personally, joint pain is one of the biggest ongoing struggles. Some days my body aches constantly, particularly in my knees and ankles. I also deal with eye irritation and sensitivity.
Skin issues are another thing I experience regularly. Breakouts and irritation often appear alongside periods where my body is struggling more generally. And these are all recognised parts of IBD.
So even if my diseased bowel is gone, the effects of IBD still remain in many ways.
Is IBD in Our DNA?
One of the most hopeful developments recently has been new research looking deeper into the genetic side of IBD.
Scientists have identified genetic pathways linked to inflammatory bowel diseases, helping researchers better understand why some people develop conditions like Crohn’s Disease and Ulcerative Colitis in the first place. The hope is that discoveries like this could eventually lead to more targeted treatments, earlier diagnosis and maybe one day, an actual cure.
For a disease that still has so many unknowns, that kind of progress matters massively.
Because right now, treatment for many people is often trial and error. You try medications and hope your body responds. Some people achieve remission quickly, whilst others spend years cycling through options before finding anything that helps.
Research into genetics feels like a step towards understanding the root cause instead of constantly firefighting the symptoms.
So… Where Does This Leave Me?
Honestly, I still consider myself someone living with IBD.
I may not currently have active disease, and I no longer take targeted medication for flare-ups, but I still live with the effects of the disease and the aftermath of years of treatment every single day.
And whilst a stoma changed my life for the better in many ways, I wouldn’t call it a cure. It’s a management route. One that comes with its own challenges, frustrations and difficult moments.
Just this morning, I spent 40 minutes trying to get a stoma bag on because my stoma was particularly active and refusing to cooperate. Moments like that are still very much part of my daily reality.
IBD may look different for me now than it did 12 years ago, but it still shapes my life in ways both visible and invisible.
And I think that still deserves recognising today.
As always, thanks for reading…
