Ben’s story – Crohn’s Disease

Tell us about yourself 

“I’m Ben and I’m 38 years old. I live in Suffolk with my wife and two children (five and eight years old) and I’m a biology teacher. We have two guinea pigs, and in my spare time, I like to head to the gym.” 

When did you first experience symptoms of Crohn’s disease?  

“Everything feels that long ago that it’s a bit of a blur! I remember experiencing abdominal pain that would leave me curled up on the floor. I didn’t know what it was but it felt like someone was clawing at me from the inside. It was horrible. I had diarrhoea and lost over five stone in a few months. I was overweight, but this still came as a shock, despite being 6”3 and of bigger build. At one point, my mum said, “I can see your ribs from behind”.” 

Talk us through your journey to diagnosis with Crohn’s disease 

“My dad has Irritable Bowel Syndrome (IBS), so my GP assumed it was this. Honestly, they didn’t seem interested in me and told me to keep a food diary. In 2009, through my employment, I had private healthcare. I managed to get a colonoscopy this way. “It’s Crohn’s”, I was told immediately after. I’d never even heard the word before. I still felt giddy from the sedation so everything felt a bit surreal. I remember saying to my, then girlfriend, now wife, “I’ve got a disease. That makes sense!” I was relieved to have a diagnosis.” 

Is there anything that sticks out to you from your hospital experiences? 

“Sometimes it’s not Crohn’s disease that I find the problem, it’s the side effects of Crohn’s and prescribed medication. Whilst on immuno-suppressants, I was admitted to hospital with suspected meningitis, they wanted to do a lumber puncture. I’m not good with needles and bawled my eyes out. Hospital decided to find an alternative. I had pneumonia. I received antibiotics in hospital for three days. This was the first time that I realised how serious some prescribed medication for Crohn’s is.”  

Talk us through your treatment  

“From 2009-2019 I remember feeling a fraud as the only stories I’d read of Inflammatory Bowel Disease (IBD) seemed life-threatening. I’d always been told my Crohn’s was mild. By 2019, I relied on prescribed steroids increasingly to maintain remission. The longer I relied on them, the more the side effects became a worry. 

I was put onto biologic treatment which, later, I’d become non-responsive to. I’d just assumed this treatment was going to work. Mentally, I felt so beat.  It was the urgency for the toilet and not being able to do the things I wanted as a dad. I felt so restricted and like I was putting so much pressure on my wife.”  

When did you find out you needed stoma surgery? How did you feel? 

“I was in disbelief. Initially, I was told that having an ileostomy (bringing the small bowel to an opening in your tummy to form a stoma) would be temporary. This really helped me to get my head around it. I watched real-life videos online to get insights into stoma life and get past the fear.  

A scan revealed my disease was now moderate, extensive and spreading. I was told I would need a permanent ileostomy. I woke up from the creation of my ileostomy and couldn’t sit up. However, it was a different pain. One that would get better.  

Six months on, mucus discharge from my rectum was increasing, along with blood and urgency. “This is ridiculous!” I thought, “Another thing I can’t control, just when I was starting to get my life back”.  After a helpful discussion with my surgeon, surgery went ahead to remove my rectum and anus.” 

Describe having a stoma in a few words 

“A life-changing enabler.” 

How are you doing now? 

“I know my body much better and when something’s wrong. I do find it hard mentally to deal with the worry of Crohn’s returning in another part of my digestive system, but I try to focus on day-to-day life. I put my worries into my time in the gym and take control back. 

I’ve had my stoma a year and half now and it’s just part of me, doing an important job. Occasionally, I do have bad days but I’m a better person and much more aware of what others around me may be going through.” 

Why are you sharing your story today?  

“Guts UK are great at showing people not to ignore their symptoms and this is so important. I hope they can help find more approaches into helping people be seen by a medical professional. I struggle myself around my work hours and I often feel like it’s a lot of hassle even trying to be heard, but love connecting with others with IBD and helping where I can. People need somewhere to go where they can be listened to and understood. I hope that by sharing my story, I can show others that you don’t have to do it alone. I won’t sugar-coat stoma life and I pride myself on this. Like life without a stoma, there are ups and downs, but things will get better.”  

What we do

Guts UK is the only UK charity funding research into the digestive system from top to tail; the gut, liver and pancreas.

People are suffering. People are dying. All because of a lack of knowledge about our guts. Guts UK exists to change that. 

With new knowledge, we will end the pain and suffering for the millions affected by digestive diseases. Please consider donating today. Your donation will help fund research leading to earlier diagnoses, kinder treatments and ultimately, a cure.