• The prevalence of UC is estimated to be 5 million cases worldwide, and the number of incidences continues to increase²
• UC is more common in industrialised and westernised countries^3,4
• The highest rates of UC are found in North America and Northern Europe⁵
• In the UK alone, at least 1 in every 227 people is diagnosed with UC⁶

• UC can occur at any age, but it more often shows up in younger people⁷
• The two main timepoints where most people get diagnosed are:⁵
  – 15–30 years old (the majority)
  – 50–70 years old (a smaller group)

• Inflammatory bowel disease (IBD) affects men and women equally, but some studies show that UC may be more common in men^7,8

“My UC is fine, honestly. I don't really go to the toilet much more than normal. Maybe 2–4 times a day total? I try to keep it to less than that as I'm too busy with work. I love my job, and my media clients; we had 3 workshops with them last week and we’re gearing up for a really intense period. So, of course I’m run down at the end of the day, but who isn’t? No one said having a chronic disease was easy! Of course you have to make compromises.”

Recently, Júlia has had a recurrence of some UC symptoms (abdominal pain; diarrhoea), which have worried her that she may have to step away from client work – work she really values. To manage this, she has started fasting¹¹ and avoiding certain foods and social situations involving food in an attempt to reduce her number of daily stools. This has led to fatigue and light-headedness during the working day.  



Can you think of a patient like Júlia, whose resilience is impacting their quality of life?

Initially prescribed oral 5-ASAs. Corticosteroids (CSs) were added after a series of flares, but Amadou became CS dependent. He continued with oral 5-ASAs, and azathioprine was added to wean off CSs. He achieved clinical remission, but requested to be taken off azathioprine after ~3 years because, similar to when he was CS dependent, he experienced repeated infections. Amadou then continued with oral 5-ASAs, with topical 5-ASAs being prescribed ~1 year ago to treat persistent symptoms. He is currently not prescribed with CSs.

“I’m a bit tired and stressed out, but otherwise good. Thanks for recommending the patient organisation. Their website is very insightful and convinced me that I'm on the right treatment. I’m doing OK on my new meds. Football? No, I had to quit the team unfortunately, I’ve had a busy period at work, and I was finding it hard to keep up with the demands of both work and football.”

Amadou has not disclosed to his doctor that he is still experiencing abdominal pain on his current treatment. He is highly health literate and is aware this means he will likely require advanced therapy, but he has downplayed his symptoms because of his safety concerns. Amadou is highly stressed because of his situation. The persistent symptoms are affecting his social life, causing him to quit the football team he was captain of, something he took great pride in.


What questions would you ask to better understand a patient's experience with UC?

“A lot has happened since we last spoke. I’ve sadly left the band. I can’t keep up with the live shows these days. Instead, I’ve started music lessons from home. It’s definitely a step down from the stage, but working from home is a better fit for me these days. My UC is OK, I think. I’ve had no bleeding since we started the steroid foam. It would be nice to know a bit more about my type of UC – isolated proctitis, I think it’s called?” 

Live music has become increasingly difficult for Markus. Having to apply the topical foam backstage before a gig was neither convenient nor a pleasant experience. What’s more, he started to experience troublesome symptoms more frequently. Markus is embarrassed to talk about it, but he has experienced accidents at work during gigs due to sudden onset of bowel urgency. This has negatively impacted his ability to work, because he always needs to know where the nearest toilet is. Despite his passion for live music, he felt he could only function fully within the comfort of his own home, so he quit the band and started teaching music from home instead. 



Do you know any patients with UC who have shaped their life around their disease?