Crohn's and Colitis: What Your Treatment Path Tells Research

Every figure in this guide comes from a published source, linked where it appears and kept in CureCircle's evidence base with the source's own words. It is not medical advice. Read on 7 November 2026.

If you live with Crohn's disease or ulcerative colitis, you may well have been through a sequence like this: steroids for a flare, then an immunosuppressant, perhaps a biologic, then another when the first stopped working, alongside diet changes and maybe surgery. Each step was decided on what was known about people in general. What happened to you, which treatment calmed things down, how long it lasted, what it cost you in side effects, is the part research learns from, and it is rarely written down anywhere it can use it.

How many people live with it

The Global Burden of Disease study counted 6.8 million cases of inflammatory bowel disease globally in 2017, and 375,140 new cases in 2021. The highest rates are in Europe and North America: a systematic review in The Lancet found ulcerative colitis at 505 per 100,000 in Norway and Crohn's disease at 322 per 100,000 in Germany.

The records worth keeping

NICE's guidelines on Crohn's disease and ulcerative colitis describe the care that produces most of the records:

• Surveillance colonoscopy after the first years of colitis, with biopsies: NICE sets the interval by risk, every 5 years for low risk, 3 years for intermediate risk and every year for high risk, after a baseline colonoscopy with targeted biopsy.
• Blood monitoring on immunosuppressants: for azathioprine, mercaptopurine and methotrexate, as advised in the BNF, including monitoring for neutropenia.
• A review of biologic treatment at least every 12 months to decide whether it should continue.
• For children and young people, growth monitoring every 3 to 6 months in active disease and bone health checks in some cases.

Together with your pathology reports, letters and medication history, these show how your illness was managed and how it responded. If you do not have them, ask your clinic for a copy.

What patients are paid for their experience

Research firms pay people with IBD to describe it. A listing of current Rare Patient Voice studies shows $210 for a 90-minute phone interview with Crohn's disease, microscopic colitis and ulcerative colitis patients, and $50 for a 30-minute online survey with ulcerative colitis patients. More examples are on what patients have been paid.

What sharing it is worth

CureCircle values every contribution with a public benchmark built from what health data has sold for. On the benchmark today, a complete story with a year of the records the guidelines list comes to about $96 per licence for Crohn's disease and $129 per licence for ulcerative colitis. A Crohn's story with a symptom diary of 60 entries comes to about $281 per licence, because a diary shows the pattern of flares that appointments never capture. Every line and its source is on the Crohn's disease and ulcerative colitis pages.

A licence is not a one-off sale: the same de-identified story can be licensed to several research teams, and you earn a share each time.

How to share it

You start by writing what you live with in your own words; a few quick questions follow, then an AI interviewer asks about the details only you know, and you rate every treatment you tried, in the order you tried them. You can add colonoscopy and pathology reports, letters and pages of a symptom diary as PDFs or photos, and the AI reads them into your own medical file. Before anything is shared, you read the de-identified summary and decide.

The path you took to find what works could shorten it for the next person diagnosed. Start your story, or read what your health data is worth first.