"I tried to block my symptoms out of my mind hoping they would get better on their own." - Joe's Story

We understand many people recognise they have symptoms of Crohn's or Colitis but delay contacting a healthcare professional because they feel embarrassed, scared or because they don’t have the right words to describe their symptoms. Joe was one of those people. 

In the Summer of 2017, Joe was on a family holiday in Lanzarote when he started getting urgency to go to the toilet. He had just turned 17 and had never had any significant medical issues before so expected naturally, it would just go away. It's just a stomach bug, right? After a horrible plane journey home, running to and from the toilet on board, Joe realised his symptoms may be more than just a stomach bug. The symptoms stayed but he, like many others was too embarrassed to say anything to his family or pick up the phone and call the doctors. 

Read the blog as we hear Joe's story as he explains why he's now such an advocate for raising awareness amongst his peers and supporting our Cut the Crap campaign.


I was on holiday in Lanzarote with my family in the summer of 2017. I started to notice I was getting urgency when I was by the pool and had to rush up to the room at least once a day, not fully making it once or twice. I didn’t think much of it, and assumed it was just a normal stomach bug. I had just turned 17 and had never had any significant medical issues before, so I expected it to naturally go away. I remember the plane journey back in particular being absolutely terrible and constantly going to the toilet.

When I returned home the symptoms stayed, but I was too embarrassed to say anything to my parents or phone up the doctors. Who likes talking about their bowel movements after all? It felt like a very taboo subject.


I went back to college as normal. The first two days were fine! No real symptoms so I just carried on my usual day. Then, on the third day, I suddenly had massive urgency on the bus ride back. I didn’t make it to my door despite sprinting back from the bus stop. At this point I became really scared to leave the house since it was something I couldn’t control. I was in my 2nd year and was under pressure from myself and the college to do well. I felt trapped. I couldn’t really skip college but the fear and risk of an accident happening meant I didn't know what to do!

What then followed was something I'll never forget. I started noticing blood in the toilet. I remember the fear that struck me seeing it for the first time thinking I might have cancer or something else. As a 17 year old I never thought anything like that could happen to me. I was hoping that it was just a virus or food poisoning or something. 


I was scared, really scared. I always had medical anxiety and even little things like chest pain would make me subconsciously think I could have heart problems. So when I started getting actual real symptoms I was terrified.

I was in a very difficult position as I didn’t know what Colitis was or really anything about digestive health. I was scared to look up my symptoms in case it said ‘you have cancer’ or anything similar. I tried to block my symptoms out of my mind hoping they would get better on their own, but eventually I was forced to accept reality.


Joe

Living with Colitis


I knew now I had to say something and speak up about what I was experiencing. I finally plucked up the courage to speak to my Mum who urged me to go to the doctors. I made an urgent appointment. 

There was a lot of back and fourth with doctors and many appointments as they originally thought I had Coeliac disease. However I eventually got booked in for a colonoscopy. I was absolutely terrified but in the end the worst part was the laxative drink I had the night before, the procedure was fine! They saw my intestines were inflamed and they diagnosed me with Ulcerative Colitis on the 19th November 2017.


I know now that digestive health is really complex. A lot of symptoms are the same for a multitude of different conditions and illnesses. You could have the flu, or you could have cancer. Either way, seeking help and getting treatment significantly increases your odds of getting better faster.

There’s no point suffering in silence. What my experience has taught me is it really isn’t that embarrassing. I’m a uni student and have told most people I know about my condition and I’m still treated the same, and people understand if you explain it. At the end of the day, it can happen to anyone at any age and at any fitness level, so it’s important to get checked straight away.


I'd seen the Cut the Crap campaign as a friend shared it with me who'd seen it on social media. Seeing awareness being raised made me so happy, as that's the most important thing for me. 6 years ago when I got diagnosed I had no idea what Colitis/Inflammatory Bowel Disease was, now I see it mentioned a lot more thanks to Crohn's & Colitis UK and their celebrity ambassadors. I don’t think most people around my age know about Colitis unfortunately, which I think will change thanks to Cut the Crap. 

The Symptom Checker would've been such a great tool for me when I first started experiencing symptoms. I was really in the dark knowing what to mention to my GP and how to start the conversation. In just six questions, you can use the Symptom Checker to can find out if the symptoms you’re worried about are something you should contact your GP about. 

Life has moved on since then however. In late 2021, I decided it was time to make a change. I had a girlfriend at the time who I met online and saw at the weekends, usually with her being picked up by my dad and sent to my house, or me having to brave the 10 minute car journey to hers. It was straining our relationship and I wanted to treat her like she deserved to be treated, so I opted to have surgery.

It thing I have ever done and the hardest 2 weeks of my entire life. I entered surgery on the 11th of January 2022 and that day is special to me, as it changed my life. It was an extremely challenging road to recovery, as I had to get used to my new stoma, as the stomach pain and the inability to bend over and lift things, but I got stronger. I had a scar all the way down my torso for the rest of my life, and an ileostomy bag too, but it was well worth it.


I’m currently in my 2nd year of University studying business and marketing at DMU, hoping to get into digital marketing as a career.

The last 2 years have definitely been the best of my entire life. I’ve met so many amazing people and done so many things that I didn’t think I would ever be able to do when I got diagnosed. I love going on nights out, going to the gym and generally love to always be doing something. I'm currently planning a trip abroad with my friends at uni and house sharing with 6 of my best mates. It’s such a contrast from being trapped in my house unable to see the light at the end of the tunnel. There’s always a way out of the lowest lows.

Are you ignoring symptoms?

Are you making excuses? Don't ignore the signs, it could be Crohn's or Colitis. Check today by using our Symptom Checker.


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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.

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