"For the first time, I felt like I wasn't alone, I felt seen." - Nishil's Story

Nishil lives in Leicester and works for a children’s hospice charity. He was diagnosed with Ulcerative Colitis more than 20 years ago. This is his story.


Whenever anyone talks to me about their health worries, I tell them it’s important to always listen to your body, because at the end of the day, you know it best.

Looking back, I must admit, I did ignore my Colitis symptoms for quite some time, and put off going to see my GP about them. I was 20 years old and at university when I first noticed blood in my poo and had severe stomach pain which would come and go in waves.

I didn’t think it was anything to worry about at the time, especially as I was  a student and thought I had more ‘important’ things to be focusing on.


Nishil

Living with Ulcerative Colitis 


My symptoms were very varied, as I had quite a lot of them. From what I remember, it started with the blood in my poo, and there was more and more of it. I didn’t know what it meant but at the same time I was too scared to do anything about it. Add to that the serious stomach ache and chronic fatigue - it was a lot to navigate while I had university deadlines to meet and exams to sit. I started losing weight, too.


I finally decided to visit my GP. I was lucky as my doctor and consultant suspected I had Ulcerative Colitis pretty quickly based on my symptoms. However, I still had to have a number of tests, including a colonoscopy and an endoscopy before being officially diagnosed. Again, I remember this being a quick process too, and with hindsight it really makes me feel sad that I put up with my debilitating symptoms for so long, before seeking help.

I’ve tried many different medications to help keep my Colitis at bay, but at the moment I’m on Mesalazine, which is working well for me.


For more than 10 years, hardly anyone knew about my condition. Even those closest to me. I found it very awkward to talk about. I was embarrassed, as I didn’t initially know what I was dealing with, and on top of that, I had no idea how to even start that kind of conversation.

More than a decade after my diagnosis, I found the Crohn’s & Colitis UK website and started following the charity on social media. I would go as far as to say that it has changed my life. I decided it was time to start talking to the people around me about what was going on.

On the website, I found a guide for employers and I took the bold step, for me, of sharing it with my boss. Remember I hadn’t told anyone what was happening, so it was a really big deal. And so helpful.


The power of social media is remarkable, actually. I was constantly reading posts and stories about others who had similar symptoms to me, and who were openly talking about their condition, with confidence and without embarrassment. For the first time, I felt like I wasn't alone, I felt seen.

It gave me that push to open up to those closest to me, so that I could be honest about what was going on. I even took part in My WALK IT – which gave me a real sense of pride.


To anyone who is worried about their symptoms, I would say book an appointment with your GP – several appointments if you have to. It’s important to get things checked out.

And to anyone who’s living with Crohn’s or Colitis, remember, there are so many helpful resources and communities out there, which help you feel less alone – it’s not as scary as you think.


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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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