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How it feels - identity and the fear of missing out
There are so many symptoms of Crohn’s and Colitis and everyone experiences them differently. For Priscilla, the first signs of Colitis were seeing blood in her poo and needing to rush to the toilet urgently. Like many people, she was terrified at first and didn’t want to tell anyone what was happening, Now, after life-saving stoma surgery, Priscilla is determined to spread the message that the sooner you act on your symptoms, the better - because a diagnosis doesn’t have to define you. This is her story.
Before I got really sick and everything snowballed, I was an English teacher at a college. It was more than just my bread and butter: I adored it. My students came to me feeling disillusioned and silenced by the school system and I helped them find their voices so they could succeed in life. It was a dream job.
Although work was going really well, I was already struggling with my health. I’d been diagnosed with rheumatoid arthritis while at school. I tried to push through the pain, put on a brave face and almost pretend it wasn’t happening because I wanted to get on with life and had bills to pay. But then I started going to the toilet a lot more than usual and noticed blood in my poo and I knew there was something really wrong.
I was convinced I had bowel cancer and I just wasn’t ready to think about that. I didn’t tell a soul and kept it completely to myself. I stopped eating because I thought that if I did that, there would be nothing to make me go to the loo and I could avoid the pain. I lost loads of weight and by the time I went home for Christmas, my mum was really worried about me.
Two months later, during the February half-term break, I was the sickest I had ever been and ended up in hospital. I finally mentioned the bleeding and was rushed in for a colonoscopy. My bowel was so badly inflamed the doctors could barely get around to look properly or take samples to test. I was diagnosed with Ulcerative Colitis and spent the next month in hospital.
Things were really up and down and I couldn’t go back to work properly because I was so anxious about being able to get to the toilet on time if I needed it. I felt everything was just floating away and I was trying to grab pieces of the old me to keep my identity and independence.
I stopped making plans with friends because I just wasn’t well enough and I didn’t want to feel like I was holding other people back. In October 2023, I was made redundant.
It was around then that doctors told me I needed surgery to remove part of my bowel, but they were worried it might be too risky as my body was so weak and my symptoms so severe. After Christmas, I was back in hospital again, being fed through a tube because I couldn’t eat. I was dehydrated and in agony. There were so many conversations going on around me about if and when I could have the operation. I began to feel utterly powerless and like I had no control over my own life. Then, one day in March 2024, I became so unwell the surgeons decided it was a case of “now or never”.
When I opened my eyes in intensive care after the surgery, my mum was at my bedside and I just asked her: “Is that it? Do I have a stoma now?” I can’t tell you the relief I felt when she nodded. I’m not going to pretend that it was all plain sailing – it took me a long time to adjust to life with a stoma, but actually once you get used to the fact you’re pooing into a bag, it’s hugely liberating.
There’s also real strength in community. Crohn’s & Colitis UK has helped me connect with other people who understand what I’m going through and that’s been really powerful.
So my message to anyone who’s worried about symptoms like frequent diarrhoea or blood in your poo is this: please don’t be scared and just tell someone. I know that can feel like a huge mountain to climb at a time when you’re scared and exhausted. But trust me, it’s so important to reach out for help if you feel something isn’t right.
There’s also real strength in community. Crohn’s & Colitis UK has helped me connect with other people who understand what I’m going through and that’s been really powerful. I haven’t been able to go back to teaching yet, but I have started going out again - including to the theatre, which I had missed so much. And all that time in hospital helped me find a talent for crochet – so that might even be my new career. Slowly, slowly, I’m getting back out there and living my life now. It’s a calmer life, a more intentional life – but it’s my life and I’m grateful for it.
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Helpline Service
We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.
Our helpline team can help by:
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Providing information about Crohn’s and Colitis.
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Listening and talking through your situation.
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Helping you to find support from others in the Crohn’s and Colitis community.
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Providing details of other specialist organisations.
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If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.