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Recently diagnosed

If you’ve just been diagnosed with inflammatory bowel disease (IBD), or you think that you might have it, you’ll most likely have lots of questions about your condition and how to manage it. The links and information on this page aim to support you post-diagnosis.

Recently diagnosed

What is inflammatory bowel disease?

Inflammatory bowel disease, also known as IBD, is the term for a group of illnesses in which one or more parts of the gastrointestinal (GI) tract suffer from chronic (long-term) inflammation.1

The two main forms of IBD are Crohn's disease and ulcerative colitis.1 IBD is an autoimmune disorder – where your immune system incorrectly attacks your own body, causing abnormal inflammation in the gut. Over time, this constant inflammation damages your tissues, leading to the varying symptoms of IBD.1-3

If you have had abdominal pain, bloating, or a change in bowel habits for more than 6 weeks, your doctor might suggest a blood test to look for the markers of inflammation that suggest you have IBD.4

A diagram showing the gastrointestinal tract, comprising of organs from mouth to the anus including: oesophagus, liver, bile ducts, stomach, gallbladder, pancreas, small intestine, large intestine and rectum
What is ulcerative colitis?

Inflammation of the lining of the large intestine and rectum (called mucosa).2

What is Crohn’s disease?

Inflammation of any part of the digestive system which may occur in some areas and not others.3

Useful resources when you have just been diagnosed

When you have just been diagnosed, the amount of information online can be overwhelming. Find below our short video on life after diagnosis, as well as our podcast, What I wish I'd known, which focuses on the first questions you may have following diagnosis.

Life after diagnosis

Learn about the steps you can take following diagnosis in different areas of your life, to get yourself back on track and get the support you need.

The views expressed in this podcast are those of the individuals involved and do not represent those of Janssen. This podcast is intended to be informative and educational and is not a substitute for professional diagnosis or treatment. This podcast was funded by Janssen Sciences Ireland UC and participants were paid for their time.
CP-389853 June 2023

How common is IBD?

Crohn’s disease (CD) and ulcerative colitis (UC) can affect people of all ages and genders.2,3,6

  • Crohn’s & Colitis UK estimate around 1 in 123 people are living with CD in the UK.7
  • UC is usually diagnosed between the ages of 15 and 25. Around 1 in 420 people in the UK have UC, about 146,000 people.2,8 It is more common in white people of European descent, particularly from the Ashkenazi Jewish community, and black people. It appears to be rarer in people of Asian descent although it is not clear why.2

What causes IBD?

While the underlying causes of IBD are not fully understood, research suggests that it is due to a combination of several factors including genetics, a problem with the immune system, environmental triggers, and/or previous infection.1-3,10

Studies show that relatives of someone with IBD have an 8- to 10-fold greater risk of developing these conditions than usual. Genetic factors are stronger for Crohn’s disease (CD) than ulcerative colitis (UC).11

Types of IBD

Most cases of IBD are Crohn’s disease or ulcerative colitis. Which one you have depends on the exact location and nature of the inflammation.

Sometimes IBD is called ‘indeterminate colitis’ when doctors are not sure which type you have.12

CROHN'S & COLITIS UK logo.
Crohn’s and Colitis UK

Find out about other types of IBD at Crohn’s & Colitis UK.

Getting Diagnosed

Find out how Crohn’s disease and ulcerative colitis are diagnosed

People with IBD report that getting a diagnosis to explain their symptoms improved their emotional wellbeing13*

– IBDrelief IBD Quality of Life Survey

Patient talking about their IBD with their healthcare team
Talking about your IBD

Many people with IBD, particularly those who have been recently diagnosed, struggle to talk about their condition. Find resources to help you get started.

Patient discussing different treatment options with their doctors
Finding the right treatment

Finding the right treatment can be difficult and you may need to try several different options to find one which works for you. Find out more on treatment options.

A woman suffering from stomach pain, a symptom of IBD
Managing your IBD

With IBD, you may experience a range of symptoms. Read more and learn how to manage these symptoms and talk about them with others.

Two friends catching up over a cup of coffee
Living well with IBD

You will have many questions about how to continue as normal a life as possible and how you can keep yourself well. Explore Living Well to find out more.

*IBDrelief patient survey data from 167 respondents with IBD in the UK. Pre-diagnosis 52% of respondents reported an emotional wellbeing score of 3/10 of lowers, with just 18% reporting this low a score after being diagnosed.13

Abbreviations

CD = Crohn’s disease; GI = gastrointestinal; IBD = inflammatory bowel disease; UC = ulcerative colitis.

  1. NHS. Inflammatory bowel disease. www.nhs.uk/conditions/inflammatory-bowel-disease/. Accessed October 2023.
  2. NHS Inform. Ulcerative colitis. www.nhsinform.scot/illnesses-and-conditions/stomach-liver-and-gastrointestinal-tract/ulcerative-colitis/. Accessed October 2023.
  3. NHS Inform. Crohn’s disease. www.nhsinform.scot/illnesses-and-conditions/stomach-liver-and-gastrointestinal-tract/crohns-disease/. Accessed October 2023.
  4. NICE. Quality standard: Inflammatory bowel disease. www.nice.org.uk/guidance/qs81/resources/inflammatory-bowel-disease-pdf-2098903535557. Accessed October 2023.
  5. NIH. Your digestive system and how it works. www.niddk.nih.gov/health-information/digestive-diseases/digestive-system-how-it-works. Accessed October 2023.
  6. Torres J, et al. ECCO guidelines on therapeutics in Crohn's disease: medical treatment. J Crohn's Colitis. 2020;14(1):4-–22.
  7. CCUK. New research shows over 1 in 123 people in UK living with Crohn’s or Colitis. https://crohnsandcolitis.org.uk/news-stories/news-items/new-research-shows-over-1-in-123-people-in-uk-living-with-crohn-s-or-colitis. Accessed October 2023.
  8. Pasvol TJ, et al. Incidence and prevalence of inflammatory bowel disease in UK primary care: a population-based cohort study. BMJ open. 2020 Jul 1;10(7):e036584.
  9. Raine T, et al. ECCO guidelines on therapeutics in ulcerative colitis: medical treatment. J Crohn's Colitis. 2022;16(1):2-–17.
  10. Lee SH, et al. Immunological pathogenesis of inflammatory bowel disease. Intestinal research. 2018 Jan;16(1):26.
  11. Cho JH, Brant SR. Recent insights into the genetics of inflammatory bowel disease. Gastroenterology. 2011 June 1;140(6):1704-–12.
  12. CCUK. All about Crohn’s and colitis. https://crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/understanding-crohns-and-colitis/all-about-crohns-and-colitis. Accessed October 2023.
  13. IBDrelief. Impact of IBD on physical and emotional health: Findings from an IBDrelief survey. Available at www.ibdrelief.com/impact-of-ibd-on-physical-and-emotional-health. Accessed October 2023.