Stephen’s Story – Crohn’s disease

Tell us a little about yourself

“I’m Stephen, I’m 59 and I live in East Yorkshire with my wife, Louise. We have two children who are unidentical twins, Leonie and Alexander, who are 27 years old. We also have a cat called Lois and four pet rabbits. I’m currently between jobs and my hobbies include gardening, growing carnivorous plants, doing crafts and taking part in local craft fairs. Getting out can sometimes be difficult, but I like to get fresh air where possible.”

When did your Crohn’s disease symptoms begin and what were they?

“Throughout 2007, I was poorly and went backwards and forwards to the doctors. They’d prescribe me antibiotics repeatedly. In October 2007, I developed bad stomach pain and diarrhoea. On a different issue, my GP prescribed a few rounds of steroids for my asthma, which seemed to help my stomach symptoms also. However, when I came off the steroids, everything continued.”

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

“I remember sitting in a chair at home feeling so poorly, but the GP kept telling me that it was a stomach bug. In December 2007, Louise and I had been to see our children at a school festival, and I remember coming home and immediately being very sick in the toilet. One morning, Louise came back from work and told me she was taking me to A&E despite my reluctance.”

What happened at A&E?

“In triage (where they assess what level of treatment you require in hospital), a consultant examined me. He pressed the right side of my stomach, and I immediately jolted upright in pain. “It’s your gallbladder”, he said, and I was admitted to a surgical ward. I had an abdominal scan and an endoscopy (a thin tube with a small camera on the end inserted via the mouth), which came back clear and despite only being able to eat half a potato in two days, I was sent home. I was still very ill and had lost three stone in weight.”

Did your symptoms improve at home?

“Just a few days before Christmas 2007, Louise took me to an out-of-hours doctor. I was prescribed strong pain relief and sent home. The morning of the twins’ birthdays arrived, 22nd December, and on waking up, I knew I needed to go back to hospital. Louise phoned her parents to look after the children and took me there. I was admitted to hospital and had an ultrasound scan on Christmas Eve which didn’t reveal anything.

Then after Christmas, on 28th December, I had a CT scan. I was told by doctors that they’d spotted something, and I was referred to gastroenterology (the branch of medicine where healthcare professionals focus on the digestive system). I saw a consultant on New Years Eve, and I was prescribed more steroids. He told me “I think you’ve got Crohn’s”.”

What happened in the New Year?

“I had a barium meal test (this involves drinking some barium liquid, which will show up your oesophagus, stomach and first part of the small intestine on x-ray) and another endoscopy. I was sedated for this one, much to my relief! Fortunately, I had health insurance at the time and was able to see my consultant privately, at a hospital which was actually attached to the NHS hospital. I then had a colonoscopy (a thin tube with a small camera on the end inserted via the back passage) back in the NHS hospital.”

Is there any particular hospital experience you remember and why?

“There are a few experiences that stand out in my memory. One memory was having to drink two litres of a solution to prepare my bowel for a scan. I was in so much pain and wasn’t allowed any pain relief. On the other hand, some of the nurses were super kind to me whilst I stayed in hospital and went above and beyond to look after me and make me comfortable.”

How are you now?

“I’m still in medical remission (where symptoms decrease or disappear) on prescribed medication. Five years ago, before we moved up to East Yorkshire from Surrey, my medication dose was reduced as a precaution. Because I had been on the medication for a long time, doctors expressed their concerns about the effects it may have on my body. The hospital I’m now under tried to take me off it completely, but I fought against it. If it isn’t broken, don’t try to fix it, I thought.

Crohn’s affects your whole body. I have my good days and bad days. Fatigue is such a struggle, and I always feel like my immune system is in fight mode! I have lung conditions: Chronic Obstructive Pulmonary Disease (COPD) crossed with asthma which adds to the fatigue.”

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

“It’s a lifelong disease, even when you’re in medical remission. Every day is so different and sometimes, people make comments that show that there is still so much more awareness to be raised. Recently, a lady going through digestive symptoms said to me “I hope I have Crohn’s” and I thought to myself “You really don’t understand what it is.” It’s not “just” a toilet disease, it’s pain and everything else it does to your body.”

Why are you sharing your story today?

“I am always willing to share my story and show that everybody’s story is valid. There is light at the end of the tunnel, even if that light seems blurred sometimes!”

What are your hopes, in general, for the future of Crohn’s disease?

“Faster diagnosis would be wonderful to enable quicker and more effective treatment.”

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. 

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