Nearly half of people newly diagnosed with inflammatory bowel disease (IBD) report that they “never feel well” in the months following diagnosis, according to new analysis from Ampersand Health.
Read the full report.Using anonymised real-world data from almost 18,000 people living with Crohn’s Disease or Ulcerative Colitis, the research found that 45% of people report “never feeling well” in the first three months after diagnosis, even when tests suggest the disease is stable.
The findings challenge a narrow focus on inflammation alone. Many people who reported feeling persistently unwell did not show signs of poorly controlled disease. Instead, ongoing pain, fatigue and anxiety were the most common contributors – highlighting that IBD is experienced as more than flares and remission.
Encouragingly, this experience does change over time. The likelihood of reporting “never feeling well” falls within the first one to two years after diagnosis, dropping to around 30% as people learn to understand their symptoms and adapt to life with a long-term condition. However, the impact does not disappear entirely: around one in five people continue to report never feeling well even five to 10 years on.
“Clinical teams mostly focus on stabilising inflammation and physical symptoms early on, which is entirely valid” said Professor Bu’Hussain Hayee, Consultant Gastroenterologist and Co-Founder at Ampersand Health, “but for many patients the emotional and experiential burden at diagnosis is just as significant. Mental and physical health are deeply interconnected – anxiety, fear and fatigue can amplify symptoms and impact quality of life, even when the disease looks ‘controlled’ on paper. A whole-person approach is essential if we want people to not only be stable, but actually feel well.“
People living with Crohn’s Disease and Ulcerative Colitis are taking to social media in response to the data – sharing the advice they’d give their newly diagnosed selves using the hashtag #MoreThanMyIBD.
The research underlines the need for a whole-person approach to IBD care. This is the principle behind My IBD Care, Ampersand Health’s app used by over 50,000 people to track their condition, prepare for appointments and feel more supported between them, including through its specialist AI assistant, ElenaAI.
Learn more about My IBD CareAbout the data
Ampersand Health analysed anonymised responses from 17,882 people living with Crohn’s Disease or Ulcerative Colitis in the UK. The data covers a 12-year period (2014–2026).
Key findings include:
- 45% report never feeling well in the first three months after diagnosis
- Rates fall to around 30% within one to two years
- Around one in five people continue to report never feeling well long-term.
