Dan McHugh was diagnosed with Crohn’s Disease in 2008, aged 14. He has been under the care of the Inflammatory Bowel Disease (IBD) service at Leeds Teaching Hospitals ever since.
On World IBD Day (19 May), Dan shared his thanks for the difference the team in Leeds has made to his life and his experience of taking part in research trials.
He explains: “I was diagnosed with Crohn’s when I was starting prep for my GCSE’s. I think the stress of that was a factor in bringing on my initial symptoms which were tons of toilet visits and being seriously underweight. The actual diagnosis came from Dr Puntis in Leeds after a recommendation from Leeds Dental Hospital. Believe it or not one of my first symptoms was a very swollen mouth with ulcers which I thought had been brought on from braces.”
Dan had a proctocolectomy operation in November 2017. This significantly improved his quality of life and as a result, his day to day life is less affected by Crohn’s.
“Prior to my surgery my life revolved around Crohn’s and my symptoms. The worst being the constant and sudden urge to go to the loo. So much so that drives to unknown locations consisted of googling distances and calling various stop offs to enquire about toilet facilities prior to being able to leave. Even minor things like being sat at my desk would be so draining and energy sapping that my head would physically be dropping as I nodded off. All of that has a knock on effect on your mentality. I can say for me I developed a sense of self-hatred where you are angry at yourself for being ill. Crazy I know from the outside.” he said.
Dan has been under the care of the Leeds IBD service since he was diagnosed, firstly at Leeds Children’s Hospital and now at St James’s Hospital. The team of consultant gastroenterologists and specialist IBD nurses care for around 4,000 patients with Crohn’s disease and ulcerative colitis from Leeds and the surrounding areas.
“I honestly can’t speak highly enough of the entire IBD team. The nursing staff are amazing! The fact that following my surgery when I was no longer having appointments regularly I still brought my new born son in with a Christmas card for the team should give you a clear picture of the relationship they build with you.”
In Leeds the team actively promote research to their patients, offering the opportunity to take part in trials as another option in their treatment.
Dan explains: “I have taken part in several trials. Some were more successful than others but alas none brought on remission. That being said, if you are out of non-surgical options I would highly recommend them. The nursing staff at the Leeds Clinical Research Facility were again outstanding and they have a genuine interest in your health and wellbeing.”
“Whilst not every drug works for every person I think the drug trials are a great option. Firstly you’re doing your bit for potential IBD patients as you could trial the next ‘Wonder Drug’ that helps countless others, and secondly, I may have been one of the most stubborn ‘anti-surgery’ people ever but knowing I’d really exhausted everything reassured me that surgery was necessary” he said.
And Dan’s advice to anyone thinking of taking part in research?
“If you’re being offered a place take it! The drug you’re offered could be the key to getting your life back.”
Dr Christian Selinger, Consultant Gastroenterologist and Lead for IBD adds: “Here in Leeds we have a strong focus on clinical research to better understand IBD and bring positive change to the care we provide for our patients. We conduct studies designed in Leeds to better understand the effects of current treatments and how to prevent cancer in IBD. We also look at how knowledge affects patients and their decisions, in order to get better at providing information for them.”
“In addition we take part in large international studies exploring new treatments which helps develop future treatments but also allows our patients that have exhausted current treatment options to try new options not otherwise accessible to them.”