Ziyad’s story – Crohn’s Disease

Tell us a little about yourself  

“I’m Ziyad. I’m 35 and from London. I enjoy playing football, going to the gym, and spending time with friends and family. I probably seem like your average guy, but living with Crohn’s disease has shaped a lot of who I am today.“

Can you describe when your symptoms started and what they were? 

“My journey began when I was 16, not long after finishing my GCSEs. At first, the symptoms were gradual and felt easy to brush off. I felt run-down, had stomach pain, and started going to the toilet to empty my bowels more often than usual.  

I blamed it on exam stress or maybe just a dodgy diet. Every doctor I saw seemed to think the same. I heard the same over and over: “You just need more fibre” or “It’s probably anxiety.” I began to doubt myself. When your blood tests come back ‘normal’, but your body clearly doesn’t feel it, it messes with your mental state. I even wondered if I was making it all up. 

But I wasn’t. One morning, I had so much stomach pain I couldn’t go to school. That same day, I noticed blood after going to the toilet to empty my bowels. I didn’t tell anyone as I was too shocked and embarrassed. I hoped it would go away, but it didn’t.”

Talk us through your journey with Crohn’s disease

“Over the following year, my symptoms worsened. It felt like a cruel loop: pain, vomiting, bleeding and no sleep. I tried to get on with life like nothing was wrong. I kept playing football, going out, doing schoolwork, anything I could to cling to normality. But eventually, the unintentional weight loss and fatigue became too visible to hide. Teachers noticed. Friends asked questions. Yet I still didn’t have any answers.”

How did this impact you? 

“My relationship with food changed. Eating became a fear. My worst symptoms flared up after eating meals, especially dinner, and I started avoiding food. I restricted what I ate, became obsessed with ingredients and stuck only to what felt “safe.” At the time, I didn’t even realise that I’d developed an eating disorder called ARFID (Avoidant/Restrictive Food Intake Disorder). I thought I was protecting myself, but I wasn’t. I was slowly starving my body, and things only got worse.” 

Note: If you’re struggling with an eating disorder, you’re not alone. If you need support, visit BEAT Charity for guidance and resources. 

What happened afterwards? 

“It took a lot of persistence from my family, who could see what was happening to me even when I tried to deny it, to finally get doctors to take me seriously. After blood tests revealed I was anaemic (low levels of healthy red blood cells to carry oxygen throughout your body) and deficient in a lot of things in my body, I was finally referred to a gastroenterologist (a doctor with expertise in conditions that affect the digestive system).

After many tests, including an MRI scan (a scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body), barium swallow tests (this involves drinking a white liquid called barium that highlights the outline of the oesophagus), and various camera tests such as colonoscopies (a thin tube with a camera on one end to look at the bowels inserted via the back passage), I was diagnosed with Crohn’s disease. 

I’ll never forget the moment I got the diagnosis. On one hand, I felt relief. This was proof that it wasn’t all in my head. But on the other hand, I was hit with a wave of anxiety. I thought to myself: “No cure? What would my future look like now?” 

Are there any hospital experiences that you particularly remember? 

“Early on, I remember being so malnourished that when the nurses tried to do blood tests, they had to poke around at my veins and still struggled to get a sample. It was painful and frustrating. Nowadays, I get tense up every time I need a blood test, remembering how helpless I felt back then. It felt like it was my fault. It was like my body was failing me, and there was nothing I could do. 

Over the next few years, I was put on different medications, tried multiple treatments, and even had a few surgeries. Even the doctors didn’t make me feel like a person, but rather a set of symptoms being ticked off a list.  Things started to look up when I switched to a new gastroenterologist. I felt seen and heard. Thanks to him, I started my journey to managing my Crohn’s.

What is one thing you wish people knew about Crohn’s disease? 

“Just because someone looks fine, it doesn’t mean they are. It’s an invisible illness. The phrase “You don’t look sick” is something I’ve heard far too many times, and it’s exhausting. Behind the smile and “normal” appearance, there’s a whole battle going on that most people never see.“

Why are you sharing your story? 

“I’m sharing my story because I know what it’s like to feel unheard, misdiagnosed, and misunderstood. If even one person reads this and feels less alone, or if it helps someone spot the signs earlier, then it’s worth it. 

Guts UK Charity is shining a light on digestive diseases and fighting to give these conditions more attention, improve early diagnosis, education, and research. I want to be part of that change.”

What are your hopes for the future? 

“I hope to keep doing what I love, raising awareness of bowel disease and building a career from it, while helping others the way I wish I’d been helped sooner. I want better care for patients, better training for professionals, and better access to information. But most of all, I want to keep living my life on my terms and not be defined by my illness.“

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.