05/12/2025
It's Crohn's & Colitis awareness week and since I've just had another operation I'll tell you what it feels like and has felt like for me.
I was diagnosed with UC in early 2018 after having symptoms on and off for about 6 months.
In Jan 2021 I was admitted to hospital for a week with a swollen leg (erythema nodosum) I was put on biologics for the first time which seemed to work at first but by September I started to become really ill. I put this down to back to school bugs the kids had picked up, but I couldn't shake this illness and it just kept getting worse.
By December I couldn't leave the house. I slept a lot and I felt like I was dying, I lost 2 stone in the space of 2 weeks and I struggled to walk up a flight of stairs. I was waiting for my biologics to be changed over as they were no longer working.
In Jan 2022 I was admitted again and this time I was in for a month. Things seemed to all fall apart in hospital. Things I insisted were more Crohn's related than Ulcerative Colitis. But after not finding my issues on an MRI scan they told me it was just UC with a lot of weird things going on. I felt a bit gaslit but they knew best and I wanted to get the hell out of there. So I ended up having surgery in Feb to remove my large bowel and have a permanent stoma.
It took a few months to come to terms with everything that had escalated while I was in hospital but I felt happy to be doing normal things again.
Since then I've suffered with Extra intestinal manifestations which are more associated with Crohn's disease. It affects my skin, my joints and my tendons and also my lady parts 😬
I'd known all along and I've felt pretty bitter about this over the past few years because if I had been diagnosed with Crohn's first they wouldn't have had to take the whole of my large bowel. It could have been reversed.
In May 2025 I was finally diagnosed with Crohn's and put on more biologics, after a couple of months it seemed they weren't working and I changed over to another in September. This flared everything up again at first but gave me a lull in which they started to work and I was able to finally have the Barbie butt surgery to remove the re**um while everything was calmed down. The surgeon said it definitely had to be removed as in her words 'it was rotten' 🤢
For a few days after the op I felt like I'd been run over by a herd of elephants and I was in a lot of pain but I was in and out of sleep so it was manageable. After that things have been pretty smooth sailing. I was so worried I'd be out of action for ages but I'm ok. It's actually not that bad at all. At first it felt like something was amiss back there 😅 that soon turned into feeling like I was right on the precipice of a fart 😅 after that it felt like I'd just had a baby where everything's not quite right and right now it feels like I've got a bit of a we**ie as my stitches heal and scar flattens.
I'm 5 weeks post op and I feel quite good. I've probably overdone it a bit this week but I'm so glad to be out and about again. I may even feel better than I did before without the bloody thing slowly killing me. I can see light at the end of the tunnel now. Well, not my tunnel cos that's gone 🤣
So now after all of that, what I really feel is..
G R A T E F U L 🩷 To still be here
R E L I E V E D ☘️ That the worst is now over
H O P E F U L 🌻 That I'm as fixed as I can be
L U C K Y 🍀 That I don't have it as bad as others
You can’t always see Crohn’s or Colitis, but around 1 in 120 people in the UK are living with these life-changing conditions.
Someone may look like they’re “getting on with things” — staying busy, staying social, keeping a brave face, even while navigating fatigue, pain, joint issues or brain fog.
And it isn’t just the painful symptoms, hospital trips or medications.
It’s how it makes you feel, every day, living with an invisible illness and how much lighter that load can become when people truly understand.
By growing awareness and understanding, we can help build a world where people with Crohn’s and Colitis feel recognised, supported and less alone.
