More is needed to  be done to speed up the diagnosis of painful and debilitating bowel conditions according to one sufferer. 

As part of Crohn’s and Colitis Awareness Week, Liam Slaney, voiced his concerns that the NHS is over-stretched leaving patients waiting months to be treated. 

He said: “Although I am receiving good care now, I was in a bad way for six months with no treatment.”

Crohn’s and Colitis, known under the umbrella term of Inflammatory Bowel Disease (IBD), affects 500,000 people in the UK.

Liam, 29, from Sheffield, who was diagnosed with Crohn’s disease in January 2023, explained his path to diagnosis was very long, as he waited for doctors appointments, a colonoscopy, and his results, all while he was left in constant pain. 

“I lost a lot of weight,” says Liam. “If I was any worse, I would have been hospitalised. I didn’t see anyone while I was waiting for tests and results to come through.” 

Before he started experiencing symptoms, Liam, an Amazon team leader, was around 14 stone, but by the time he received his results, he was around 10 stone 4lbs. 

Liam’s blood test revealed a worrying increase in his inflammatory markers, and his colonoscopy results supported his later diagnosis of Crohn’s disease. 

Statistics from Crohn’s and Colitis UK, suggest that one in seven people reported they were only diagnosed with IBD during an emergency hospital admission. Data also reveals a quarter of people with IBD wait more than a year for a diagnosis, and nearly half will end up in A&E at least once before they start treatment. 

Liam says: “I know it’s a wider NHS issue, but there’s a massive hole, because you’re left in the dark, getting worse and worse.” 

December 1 to 7 marks Crohn’s and Colitis Awareness Week, a week-long campaign aiming to share the experiences of those living with the conditions, and push for change within the healthcare system. 

As part of the ‘Face the Facts’ campaign, Crohn’s and Colitis UK commissioned the ‘IBD UK Report’ – the largest survey of people living with IBD in the UK. 

Over 17,000 people shared their opinions and thoughts through the survey, and the findings concluded that: “IBD services are overstretched and under-resourced, which is having a damaging impact on the mental and physical health of those living with the conditions”. 

Despite his wait for diagnosis, Liam explained the care he received under the IBD Team in Sheffield has been good. He says: “Whenever I have a blood test that comes back abnormal, they’re always helpful and prompt in their responses.” 

Liam attends bi-monthly hospital appointments for immunosuppressant infusions, as part of his treatment programme. 

There is currently no cure for either Crohn’s or Colitis, but the conditions can be managed through medication, and sometimes surgery. 

Symptoms are often debilitating, varying from weight-loss, chronic fatigue, hair loss and dehydration, to malnutrition, joint problems, and blood and mucus when going to the toilet, which can be as frequent as 40 times per day during a flare.   

For those suffering with IBD, the condition is notably unpredictable – with often periods of active remission and management being disrupted by a flare-up, and for a lot of people with IBD, the trigger is unknown. 

Often, courses of steroids, hospitalisation, or even surgery is required to manage the condition during a flare up. 

According to the IBD UK Report: “These conditions can lead to time off school and work, withdrawal from social relationships, and inability to carry out everyday activities.” 

Liam says: “I try to take every day as it comes, and make any lifestyle changes that I need to, but it’s harder to do if you are still unwell and uncertain about everything. You have to try and stay positive, and realise there is help out there.” 

Crohn’s and Colitis UK said: “Many people recognise they have symptoms, but delay contacting a healthcare professional because they feel embarrassed, scared or because they don’t have the right words to describe their symptoms.”

The charity urges those who may be reluctant to seek help to use their online symptom tracker, which advises of next steps for anyone concerned. 

Liam’s partner, Jen Craven, 29, explained she watched her once ‘stocky’ partner rapidly lose weight, and that he looked very poorly. 

The software business development manager explained that supporting someone with a debilitating condition can often be challenging, saying: “You can’t fix the problem, but you can try and make their surroundings nicer.” 

Jen, who shares a home in Crookes with Liam, says small things such as being flexible with meals, running baths, and turning on the heated blanket before her partner gets home from work helps him in managing his Crohn’s. 

Those suffering with IBD often find themselves having to explain their condition to others, which may be difficult, being met with hostility when it comes to openly talking about bowel movements and ill health. 

Jen found that she was having to explain Crohn’s disease to her friends, most of whom hadn’t heard of the condition before. “You can’t expect everybody to know what everything is, but a lot of people just haven’t heard of it,” she says. “They probably don’t realise how poorly some people get with the condition.”

“When it comes to toileting, people are less likely to talk about that sort of thing as well.” 

A previous campaign from Crohn’s and Colitis UK, ‘Cut the Crap’, was aimed at challenging the taboo surrounding talking about symptoms, which has often led to people ignoring their health problems, and failing to be diagnosed sooner. 

As this year’s awareness week draws to a close, those who suffer with forms of IBD are still contending with delayed diagnoses, challenging symptoms, and learning to live with an underfunded and under-researched condition. 

Crohn’s and Colitis UK are now calling on politicians, pharmaceutical partners and leaders in the charity sector to Face the Facts that the IBD UK Report has found, and confront urgent issues concerning the care of those with IBD.