"It has been so hard, but there is hope." - Toby's story

Content Warning: This blog contains references to suicidal themes.

For World IBD Day 2025, Toby, who lives with Crohn's, reflects on his journey so far. From surgeries that took a toll on his mental health, to at times wondering whether things would ever feel better, Toby shares how he's now in a place where his life is full of hope and opportunity. 


My experiences with Inflammatory Bowel Disease (IBD) began with pains in my tummy, which then appeared to spread all over my body, even stretching up to my eyeballs. I also experienced extreme difficulty and pain when trying to use the bathroom, to the point that I would often cry after bowel movements. I found myself struggling with skin conditions that arrived like a storm and found that my body took an increasingly long time to heal from any wounds. I lost a huge amount of weight, and would barely eat anything at all, in case my stomach pain would overwhelm me.


I visited my GP, who was initially stumped by what was going on with me, especially by my strange and varied symptoms and suggested all sorts of diagnoses. In the end, I was referred to a hospital and put on a waiting list. As time passed, there were still no real answers, and my symptoms continued. I remember a particularly humiliating moment when I had to explain to a junior doctor in urgent care why my bottom pain was so bad it had radiated all the way to my genitals.

One day – unfortunately – the precise reality of my situation fell on me like a cartoon anvil. I was rushed into surgery to drain a septic fistula; an abscess in my bottom. The surgery was a mixture of terrifying and dull, taking hours to happen. After it was over, I needed fresh dressings every day and my body was still in revolt.


Tony wearing a hospital gown and smiling at the camera.

I grew even paler, even weaker, losing blood and pus through my clothes. It was so demoralising that although I tried to stay stoic, I started to seriously struggle: I experienced depression and suicidal thoughts and kept thinking of ending it all.


After the surgery, I finally got to see a gastroenterologist, who quickly diagnosed me with Crohn’s. After everything I had been through, it felt like at least a faint light at the end of a tunnel.

Life after this diagnosis has meant a cascade of surgeries to open me up, investigate the wreckage, and drain infected or risky fistulas. I also had to get used to a series of infusion appointments as well as taking daily medication. It’s a blessing, receiving so much wonderful (and free!) medical care at my North London hospital. Thank the heavens for the NHS.


However, I’m still processing everything that has happened to me and holding down any work throughout it all has been incredibly challenging. Thankfully, the infusions have made a big difference, but IBD massively impacts my everyday world, beyond the surgical and medical appointments. I can’t exercise right now and I’m often in pain and scared I’m going to have to run to the toilet. My weight fluctuates in a way that feels dizzyingly out of my control. The thought of relapse is a constant worry in the back of my mind. I now feel like I’m hobbling about trying to find my way. I’ve needed a lot of therapy to help me process what has happened.

On the plus side, though? I can eat again! I can spend time with friends. I can take in the world in a way that I hadn’t even realised I couldn’t before. It has been so hard, but there is hope. If I could convince the world to listen to me as I rant about Crohn’s, I’d want people to know that they should take any possible symptoms seriously. Blood in your poo should be a blazing warning sign. I’ve learned that you should always advocate for yourself in a medical environment, and I know that can feel really hard to do in a busy, overstretched hospital or GP surgery. If you feel unwell, fight for your right to be taken seriously. It could save your life. If you need to talk to someone about feeling suicidal, please contact a charity such as Samaritans for further support.

Check out more of my writing at Toby Howls on Substack: https://tobysharpe.substack.com/



Ready to take action?

If Toby's story has inspired you to get involved, find out more about World IBD Day and how you can get involved. The day is an opportunity to shine a light on Crohn’s and Colitis and the impact these lifelong conditions have on people’s lives.


Page
saved

This page has been saved in your personal space. Go to “My Page” to view all saved pages.

Helpline service

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:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Providing details of other specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

Live chat

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

Would you like to save the changes made to this page?