01/12/2025
✨ This week marks Crohn’s & Colitis Awareness Week ✨
Three years ago I was too embarrassed to talk about it, but now I’m not ashamed at all to speak up and raise awareness for this debilitating disease. 💜
I’ve suffered with “stomach problems” for as long as I can remember, but I was only officially diagnosed with ulcerative colitis in September 2022 After having symptoms of blood loss & severe pain. Getting that diagnosis wasn’t easy, and I had to push hard with my GP to be referred for a colonoscopy. Thankfully soon as I spoke with the gastro team in nevil hall I was finally put under the 2 week cancer pathway and diagnosed with IBD that week.
IBD is confusing. I didn’t understand it at first, and not many people do. It’s a lifelong condition with no cure — only treatments to try to keep it under control. And if all treatments fail, stoma surgery is necessary. flares aren’t just painful or exhausting… they can be dangerous, even life-threatening if not treated immediately. & this is something I didn’t realise until this year. How poorly this disease actually makes you.
Since 2022, my life has changed dramatically. The anxiety and depression that come with this disease are exhausting in their own right. Living with the daily uncertainty of how I’ll feel, what symptoms will show up, or whether I’ll make it through the day without pain or panic — it’s completely draining.
It’s been years of steroid use just trying to maintain remission. Unfortunately, between October 2024 and October this year, I went through the biggest flare I’ve ever had. No treatment worked. I was so poorly- in and out of hospital having daily infusions, and eventually after a lot of tests I started my first biologic – only to find out a few weeks later that I was allergic to it. That meant stopping treatment and going back to daily steroid infusions in hospital until my IBD team found another suitable treatment for me.
A few days later I was admitted to the grange where I started a new drug called Rinvoq – a JAK inhibitor. My immune system is now practically non-existent (so please keep your germs to yourself 🦠 🙈)it comes with a lot of scary side effects, and have also caused a few problems with my liver, but as of today, I finally feel like I’m starting to get better. It’s still early days & I still live in fear of having such a severe flare again- but I have my amazing consultant and all the Ibd nurses on hand if needed, which is a comfort in itself. So For now, I’m putting all my trust in this new drug and hoping it gets me to remission.
I may be broken most days,
but I’ll never be beaten.
Hopefully one day there will be a cure. 💜
