# IBD Resources Hub: full content > Curated IBD, Crohn’s disease and ulcerative colitis support resources for patients, families and carers, organised by country. Resources are grouped by country and include national patient advocacy organisations, professional medical bodies, helplines, online support communities, and research organisations. Generated: 2026-10-10 --- # About IBD Resources Hub URL: https://www.ibdsupport.net/about/ Description: Who runs IBD Resources Hub, how organisations are chosen, where the health information comes from, privacy and how to suggest a change This site gives general information, not medical advice. For questions about your own health, talk to your doctor or IBD team. If you feel very unwell, see [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help). ## Who runs this site IBD Resources Hub is run by an independent health consumer. The author is an engineer and IT professional, and has volunteered with several inflammatory bowel disease (IBD) charities in the past. The site is not part of any charity, health service, professional body or company. ## Funding and independence The site is self-funded by its author. It carries no advertising or sponsorship, and no organisation pays to be listed. The author is a member of several IBD charities, some of them listed on this site, and has volunteered with some of them in the past, but has no current volunteer or other role with any organisation listed here. The author has no current links with any pharmaceutical company. Until 2023, the author was a board member of a registered IBD charity, which closed that year, and in that role dealt with and accepted grants from pharmaceutical companies on its behalf. The charity and the companies both disclosed those grants at the time, under the Medicines Australia Code of Conduct. Being listed is not an endorsement. It means the organisation may be useful to people living with Crohn’s disease or ulcerative colitis, or to the people who support them. ## How organisations are chosen - Patient organisations and support groups come first on each country page: national charities, helplines, peer support, and stoma and pouch support. - Charities are checked against the official registers. Every organisation the site describes as a charity is checked against its country’s charity register (the ACNC in Australia, Charities Services in New Zealand, the Charity Commission for England and Wales, the Canada Revenue Agency and the US Internal Revenue Service) every month. Some UK charities are also registered in Scotland with the Scottish Charity Regulator (OSCR); the site checks them with the Charity Commission. An organisation that is no longer registered, or whose website we find has stopped working, is taken off the site until that is sorted out. - Professional bodies and research institutes are listed for completeness, in folded sections, because they mainly serve doctors and researchers. - Online communities are peer support. Members share their own experiences, and what they post isn’t medical advice. Some charities listed here receive funding from pharmaceutical companies, as many patient organisations do. The charities publish it in their annual reports, or the companies publish it in their own disclosure reports. In Australia, Medicines Australia publishes the companies’ [reports on their support for patient organisations](https://www.medicinesaustralia.com.au/code/transparency-reporting/health-consumer-organisation-support-reports/). Funding like this makes no difference to whether an organisation is listed on this site. ## Where the health information comes from The health information on this site, mainly on the [What is IBD?](https://www.ibdsupport.net/whatis/) page, is drawn from national health services and patient charities, such as the NHS and Crohn’s & Colitis UK. Specific facts, such as figures, medicine advice and when to get help, have a numbered reference so you can check them, and medical journal papers are cited only for those. This information has not been reviewed by a clinician. It is general information to help you understand IBD and prepare for conversations with your doctor or IBD team, and it can’t take your own circumstances into account. ## Financial figures Some organisation cards show a financial transparency figure, such as the share of spending that goes on charitable activities. Each one comes from the organisation’s published accounts or its regulator’s records, with the year and a link to the source. A figure like this shows where money goes, not how much good an organisation does. Running costs vary with an organisation’s size and the kind of work it does, so read the figure alongside what the organisation actually offers. ## Keeping it up to date The bottom of each content page shows when it was last updated. The health information is looked over at least once a year. The details most likely to change are checked more often: phone numbers, opening hours and medicine charges are checked against their official sources every month, and so are charity registrations. Links within this site are checked automatically every time it changes. Links to other websites are checked automatically every month, and sites that block automated checks are checked by hand. If you still find a link that is broken or out of date, please let us know. ## Privacy This site doesn’t use cookies, analytics or advertising trackers, and it doesn’t load anything from other companies’ servers while you browse. When you open the home page, the hosting service may take you to your country’s page, based on the country your internet connection appears to come from. The site doesn’t keep a record of this. If you use the light and dark switch, or pause the changing word in the header, the site remembers that choice in your browser’s own storage, on your device only. As with any website, the hosting service keeps standard server logs. The suggestion form linked below is a Google Form, so Google’s privacy policy applies to anything you enter there. What you send through the form goes only to the site’s author, and is used only to deal with your suggestion or request. Google, which provides the form, stores your answers, possibly in another country. ## Suggest a change Use the [Submit Content form](https://docs.google.com/forms/d/e/1FAIpQLScXlFCnOEyaTSSaN2a_4YDVekoqUWR1uwNhJgzpSSWo59tXXQ/viewform?usp=header) to suggest an organisation or request a change, such as a correction, a broken link, or anything that’s wrong or out of date. --- # Australian Resources URL: https://www.ibdsupport.net/au/ Description: IBD and Crohn’s & Colitis Resources for Australia Resources listed on this page: - Crohn’s & Colitis Australia: https://crohnsandcolitis.org.au/ (National organisation serving all Australian states and territories) - Gastroenterological Society of Australia (GESA): https://www.gesa.org.au/ (National professional body for Australian gastroenterologists) - The Gutsy Group: https://www.thegutsygroup.com.au/ (Australian charity funding research into Crohn’s disease and ulcerative colitis) - Australian Council of Stoma Associations (ACSA): https://australianstoma.com.au/ (National body for Australia’s 19 regional stoma associations) - GENCA (Gastroenterological Nurses College of Australasia): https://www.genca.org/ (National organisation for gastroenterological nurses) - Hudson Institute of Medical Research: IBD Program: https://hudson.org.au/disease/inflammation/inflammatory-bowel-disease/ (Medical research institute affiliated with Monash, with an active IBD program and clinical trials) - Walter and Eliza Hall Institute (WEHI): IBD Research: https://www.wehi.edu.au/research/diseases/inflammatory-bowel-disease/ (Australia’s oldest medical research institute with 9 IBD-focused laboratories) - Australian Crohn’s Disease And Ulcerative Colitis Support Group (Facebook): https://www.facebook.com/groups/138256992888746 (Online community for people in Australia with IBD) - Crohn’s Disease Australia support group (Facebook): https://www.facebook.com/groups/38303631504 (Online community for people in Australia with IBD) - Australia & New Zealand IBD Consortium (ANZIBDC): https://anzibdc.com/ (Collaborative research across Australia and New Zealand) Need to talk to someone? Call Crohn’s & Colitis Australia’s IBD Helpline on [1800 138 029](tel:1800138029) (press 1 for the Helpline) on business days; if the line is busy, CCA usually calls you back within 24 hours. Press 2 instead to book a phone appointment with CCA’s [IBD NurseLine](https://crohnsandcolitis.org.au/support/nurseline/), a nurse trained in IBD who can talk through your condition and treatment; it isn’t for urgent problems. For health advice at any time, call healthdirect on [1800 022 222](tel:1800022222). In an emergency, call [000](tel:000). If you feel very unwell, see [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help). If you’re struggling to cope, call Lifeline on [13 11 14](tel:131114) at any time, or see [other free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines). ## IBD in Australia Australia has one of the highest rates of IBD in the world. The [2025 IBD State of the Nation report](https://crohnsandcolitis.org.au/advocacy/our-projects/ibd-state-of-the-nation/) by Crohn’s & Colitis Australia estimates that 179,420 Australians are living with IBD, of whom just over 91,000 have active disease. That number is expected to reach 200,000 within a decade, rising faster than in comparable countries including Canada, the United Kingdom and New Zealand. A [2021 study](https://doi.org/10.1371/journal.pone.0252458) of more than 2.4 million patients across 481 Australian general practices found IBD in 653 per 100,000 people: 306 per 100,000 for Crohn’s disease and 334 per 100,000 for ulcerative colitis. IBD affects much more than the gut. The same [State of the Nation report](https://crohnsandcolitis.org.au/advocacy/our-projects/ibd-state-of-the-nation/) found that 70% of people with IBD experience fatigue or brain fog and 48% experience anxiety or depression. More than 1 in 3 waited longer than a year for a diagnosis, and out-of-pocket costs average about $5,900 per person each year. Thinking about donating to one of the organisations below? [Tell us what matters most to you](https://www.ibdsupport.net/au/donate/) and we’ll help you find the closest match. ## Getting care in Australia Where to start. If you think you might have IBD, start with a GP, who can arrange tests and refer you to a gastroenterologist (a specialist in the gut and digestive system). You need a current [referral](https://www.healthdirect.gov.au/what-is-a-referral) to claim Medicare benefits for a specialist visit; most come from a GP. Not sure what to do? The free [healthdirect helpline](https://www.healthdirect.gov.au/how-healthdirect-can-help-you), [1800 022 222](tel:1800022222), has registered nurses 24 hours a day who can tell you what to do next, including whether you need an emergency department. It works anywhere in Australia; in Victoria the same number answers as NURSE-ON-CALL. If you live in Queensland, you can also call the state’s own 24-hour nurse line, [13 HEALTH](https://www.qld.gov.au/health/contacts/advice/13health), on [13 43 25 84](tel:134325). Paying for medicines. Many IBD medicines are subsidised through the Pharmaceutical Benefits Scheme (PBS). [Biologic medicines](https://www.ibdsupport.net/whatis/#treatment) are subsidised only when a specialist prescribes them and your condition meets the PBS criteria, which your IBD team checks. For most PBS medicines you pay [up to $25 a script](https://www.pbs.gov.au/about/what-is-the-pbs/what-are-the-current-patient-fees-and-charges), or $7.70 with a concession card. If your family’s PBS costs in a calendar year reach the Safety Net threshold, your scripts become cheaper or free for the rest of that year: ask your pharmacist to keep a record. Crohn’s & Colitis Australia explains [biologics and the PBS](https://crohnsandcolitis.org.au/living-with-crohns-colitis/medical/medication-for-ibd/biologics-for-ibd/). Work and money. Crohn’s & Colitis Australia explains your rights at work, including under the Disability Discrimination Act, in its [workplace guides](https://crohnsandcolitis.org.au/living-with-crohns-colitis/workplace-2/) for employees and employers, and lists [financial support](https://crohnsandcolitis.org.au/living-with-crohns-colitis/financial/) that may help with costs. Full-time and part-time employees get paid sick and carer’s leave (10 days a year for full-time work); the Fair Work Ombudsman explains [who gets it](https://www.fairwork.gov.au/leave/sick-and-carers-leave/paid-sick-and-carers-leave). If you’re sick or injured and can’t do your usual work for a short time, you may be able to get Services Australia’s [JobSeeker Payment](https://www.servicesaustralia.gov.au/jobseeker-payment). The [Disability Support Pension](https://www.servicesaustralia.gov.au/disability-support-pension) is for a condition likely to last more than 2 years that stops you working. Children and teens. Crohn’s & Colitis Australia runs [youth camps and programs](https://crohnsandcolitis.org.au/support/youth-support/) for young people with IBD, and its [Students with IBD](https://crohnsandcolitis.org.au/about-crohns-colitis/students-with-ibd/) guide helps families and schools plan support, such as a Student Health Support Plan and toilet access during school hours. Family and carers. If you’re supporting someone with IBD, see [help for family and carers](https://www.ibdsupport.net/help/#supporting-someone-with-ibd), including support for carers themselves. ## National Organisations ### [Crohn’s & Colitis Australia](https://crohnsandcolitis.org.au/) National organisation serving all Australian states and territories Based in Melbourne, Australia - Public Benevolent Institution - Patient Advocacy - Health Consumer Organisation - Support Programs - IBD Helpline - Toilet Access Card - Educational Resources - Research Updates Crohn’s & Colitis Australia is the national charity for people living with IBD. It runs an IBD Helpline, local [support groups](https://crohnsandcolitis.org.au/support-groups/) and a [Connect with a peer](https://crohnsandcolitis.org.au/support/connect-with-a-peer/) service, and produces information for patients, families and health professionals. Call the IBD Helpline on [1800 138 029](tel:1800138029) (press 1). Members with a diagnosis of Crohn’s disease or ulcerative colitis get a [Can’t Wait Card](https://crohnsandcolitis.org.au/support/cant-wait-card/) to show staff when they urgently need a toilet. For young people, see CCA’s [children and teens](https://www.ibdsupport.net/au/#children-and-teens) programs above. [Learn more about CCA](https://crohnsandcolitis.org.au/about-cca/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [65% of expenditure on communications and programs (FY2025)](https://crohnsandcolitis.org.au/wp-content/uploads/2026/05/CCA-Financial-statements-FY2025.pdf) ### [Gastroenterological Society of Australia (GESA)](https://www.gesa.org.au/) National professional body for Australian gastroenterologists Based in Melbourne, Australia - Health Promotion Charity - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Patient Resources The Gastroenterological Society of Australia (GESA) is the main professional body for the doctors and researchers working in gastroenterology and hepatology across Australia. It sets the standards for clinical practice in the field and publishes both clinical guidelines and plain-language patient resources to keep care consistent across the country. Its [patient resources](https://www.gesa.org.au/Web/Web/Resources/Patient%20Resources.aspx) include plain-language information sheets on IBD medicines. [Learn more about GESA](https://www.gesa.org.au/about) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [Publishes audited accounts but no breakdown of spending by activity (FY2025); $730,000 in research grants awarded](https://www.gesa.org.au/common/Uploaded%20files/GESA/GESA%20Annual%20Report%202025-2026.pdf) ### [The Gutsy Group](https://www.thegutsygroup.com.au/) Australian charity funding research into Crohn’s disease and ulcerative colitis Based in Melbourne, Australia - Charity - Medical Research Organisation - Research Funding - Clinical Trials The Gutsy Group Foundation is a not-for-profit that raises money for medical research into Crohn’s disease and ulcerative colitis, aiming for better treatment and, eventually, a cure. Established in 1999, it is run by The Gutsy Group Inc., an incorporated association that acts as the Foundation’s trustee. [Learn more about The Gutsy Group](https://www.thegutsygroup.com.au/about-us) ## Stoma and Pouch Support Some people with IBD have surgery that leaves them with a stoma (an opening on the tummy, with a bag to collect waste) or an internal pouch made from the small bowel (a J-pouch). This organisation and its member associations support people living with one. ### [Australian Council of Stoma Associations (ACSA)](https://australianstoma.com.au/) National body for Australia’s 19 regional stoma associations Based in Australia - Charity - Patient Support Group - Peer Support - Stoma Supplies - Educational Resources In Australia, stoma products are funded by the government’s Stoma Appliance Scheme, and you receive them by joining one of 19 regional stoma associations, which also offer local support. ACSA is the national body that brings those associations together and speaks for around 50,000 Australians with a stoma. It publishes the journal Ostomy Australia and the booklet A Beginning Not an End for people new to life with a stoma. [Find your local stoma association](https://australianstoma.com.au/associations/) ## Online Communities Crohn’s & Colitis Australia runs local [support groups](https://crohnsandcolitis.org.au/support-groups/), open to people with IBD and to their partners and family, and a [Connect with a peer](https://crohnsandcolitis.org.au/support/connect-with-a-peer/) service for a confidential one-to-one conversation with someone who lives with Crohn’s or colitis. There are also Facebook groups, listed below. These are peer support communities: members share their own experiences and support each other. What you read there isn’t medical advice, so check anything about your own treatment with your GP or IBD team. ### [Australian Crohn’s Disease And Ulcerative Colitis Support Group (Facebook)](https://www.facebook.com/groups/138256992888746) Online community for people in Australia with IBD Based in Australia - Patient Support Group - Peer Support - Actively moderated A Facebook group where people in Australia and New Zealand living with Crohn’s disease, ulcerative colitis or another form of IBD share their experiences and support each other. The group describes itself as evidence-informed. ### [Crohn’s Disease Australia support group (Facebook)](https://www.facebook.com/groups/38303631504) Online community for people in Australia with IBD Based in Australia - Patient Support Group An open Facebook group for anyone in Australia who wants to talk about Crohn’s disease or colitis, whether they live with it themselves or know someone who does. Members share their experiences and support each other. ## For Health Professionals and Researchers These organisations work mainly with doctors, nurses, dietitians and researchers. They are listed for completeness; if you live with IBD, the organisations above are usually the better place to start. ### [GENCA (Gastroenterological Nurses College of Australasia)](https://www.genca.org/) National organisation for gastroenterological nurses Based in Melbourne, Australia - Health Professional Body - Educational Organisation - Educational Resources - Clinical Guidelines - Professional Development The Gastroenterological Nurses College of Australasia (GENCA) is the professional body for gastroenterology and endoscopy nurses, and has been the national voice for the field since it formed in 1978. Its focus is the training, professional development and practice standards of the nurses who care for patients during procedures such as colonoscopies and throughout ongoing IBD care. [Learn more about GENCA](https://www.genca.org/about-genca/) ## Medical Research These medical research institutes study Crohn’s disease and ulcerative colitis and look for better treatments. They don’t run support services for patients, but they are registered charities, and you can support their research through our [donation guide](https://www.ibdsupport.net/au/donate/). ### [Hudson Institute of Medical Research: IBD Program](https://hudson.org.au/disease/inflammation/inflammatory-bowel-disease/) Medical research institute affiliated with Monash, with an active IBD program and clinical trials Based in Melbourne, Australia - Charity - Medical Research Organisation - Research Programs - Clinical Trials The Hudson Institute of Medical Research is a registered charity linked to Monash Health and Monash University. Its researchers are known for their work on the gut microbiome (the bacteria that live in the gut) and on inflammation. Its IBD program covers the microbiome, how inflammation is switched on in the body (inflammasome biology), and new treatments. These include a clinical trial of a treatment developed by Associate Professor Rebecca Lim’s team, made from tiny particles released by cells from the amniotic membrane, the lining of the sac around a baby in the womb. The trial is for people with Crohn’s disease who have complex fistulas around the bottom, tunnels that form between the bowel and the skin (complex perianal fistulising Crohn’s disease). It is an experimental treatment that is still being tested, not an approved medicine. If you’re interested in clinical trials, ask your IBD team. [Learn more about Hudson Institute’s IBD research](https://hudson.org.au/disease/inflammation/inflammatory-bowel-disease/) ### [Walter and Eliza Hall Institute (WEHI): IBD Research](https://www.wehi.edu.au/research/diseases/inflammatory-bowel-disease/) Australia’s oldest medical research institute with 9 IBD-focused laboratories Based in Melbourne, Australia - Medical Research Organisation - Research Programs The Walter and Eliza Hall Institute of Medical Research (WEHI), founded in 1915, is Australia’s oldest medical research institute. Nine of its laboratories work on IBD, trying to understand why the gut becomes inflamed, what keeps that inflammation going and how new treatments for Crohn’s disease and ulcerative colitis might bring it under control. [Learn more about WEHI’s IBD research](https://www.wehi.edu.au/research/diseases/inflammatory-bowel-disease/) ## Research in Australia and New Zealand ### [Australia & New Zealand IBD Consortium (ANZIBDC)](https://anzibdc.com/) Collaborative research across Australia and New Zealand Based in Australia & New Zealand - Medical Research Organisation - Research Institute - Research Programs - Clinical Trials - Research Collaboration The Australia and New Zealand Inflammatory Bowel Disease Consortium (ANZIBDC) is a network of doctors, scientists and companies working together on IBD research across Australia and New Zealand. Formed in 2008, it links 21 gastroenterology centres and runs a shared biobank, which lets researchers run multi-centre clinical trials, cohort studies and genetics research, and improve the quality of care for patients in both countries. --- # Canadian Resources URL: https://www.ibdsupport.net/ca/ Description: IBD and Crohn’s & Colitis Resources for Canada Resources listed on this page: - Crohn’s and Colitis Canada: https://crohnsandcolitis.ca/ (National organization with chapters across Canada) - Canadian Digestive Health Foundation (CDHF): https://cdhf.ca/ (National foundation for digestive health) - The GI Society (Canadian Society of Intestinal Research): https://badgut.org/ (National organization for gastrointestinal health) - Ostomy Canada Society: https://www.ostomycanada.ca/ (National charity with local chapters across Canada) - Canadian Association of Gastroenterology (CAG): https://www.cag-acg.org/ (National professional organization for gastroenterologists) - IMAGINE (Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects): https://imaginespor.com/ (National research network) - North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN): https://naspghan.org/ (Professional organization serving US, Canada, and Mexico) - ImproveCareNow: https://www.improvecarenow.org/ (Network of children’s IBD care centers, mostly in the US; its family resources are free to use anywhere) - Crohn’s and Colitis Connect: https://crohnsandcolitisconnect.ca/ (Free national online community run by Crohn’s and Colitis Canada) Need to talk to someone? Call Crohn’s and Colitis Canada’s Help Centre on [1-800-387-1479](tel:+18003871479) (it doesn’t publish its phone hours), or use its [online form](https://crohnsandcolitis.ca/support-for-you/help-centre), which it aims to answer within 3 business days. For health advice from a nurse at any time, call [811](tel:811) in most provinces and territories, or [Health Links – Info Santé](https://www.gov.mb.ca/health/access.html) on [1-888-315-9257](tel:+18883159257) in Manitoba ([204-788-8200](tel:+12047888200) in Winnipeg). In an emergency, call [911](tel:911) (Nunavut and some remote communities have no 911 service: use your community’s local emergency number). If you feel very unwell, see [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help). If you’re struggling to cope, call or text [9-8-8](tel:988) at any time, or see [other free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines). ## IBD in Canada Canada has one of the highest rates of IBD in the world. The [2023 Impact of IBD in Canada report](https://crohnsandcolitis.ca/About-Us/Resources-Publications/Impact-of-IBD-Report) from Crohn’s and Colitis Canada estimated that 322,600 Canadians (0.82% of the population) were living with IBD in 2023, or 825 per 100,000 people (410 for Crohn’s disease and 414 for ulcerative colitis and IBD that has not been classified as either type). That number is forecast to rise to about 470,000 people (1.08% of the population) by 2035. ## Getting care in Canada Where to start. If you think you might have IBD, start with a family doctor or nurse practitioner, who can refer you to a gastroenterologist (a specialist in the gut and digestive system). If your child might have IBD, ask your doctor for a referral to a pediatric gastroenterologist (a children’s gut specialist), as [GIKids](https://gikids.org/digestive-topics/crohns-disease/) advises; see also [resources for children and teens](https://www.ibdsupport.net/ca/#for-children-and-teens-us-and-canada). Health care is run by each province and territory, so services vary. In most provinces and territories, you can call [811](tel:811) for free advice from a registered nurse at any time. In Manitoba, call [Health Links – Info Santé](https://www.gov.mb.ca/health/access.html) on [1-888-315-9257](tel:+18883159257) ([204-788-8200](tel:+12047888200) in Winnipeg). Paying for medicines. Coverage for prescription medicines, including biologics, depends on your province or territory’s drug plan and on any private or workplace insurance. Crohn’s and Colitis Canada explains [drug coverage and financial support](https://crohnsandcolitis.ca/About-Crohn-s-Colitis/IBD-Journey/Treatment-and-Medications/Treatment-Coverage-and-Financial-Support). Work and money. If you can’t work for medical reasons, [Employment Insurance sickness benefits](https://www.canada.ca/en/services/benefits/ei/ei-sickness.html) can pay up to 26 weeks of benefits if you qualify. If you are under 65, have paid into the Canada Pension Plan, and can’t work because of a disability, you may be able to get the [Canada Pension Plan disability benefit](https://www.canada.ca/en/services/benefits/publicpensions/cpp/cpp-disability-benefit/eligibility.html) (in Quebec, the [Quebec Pension Plan disability pension](https://www.retraitequebec.gouv.qc.ca/en/citizens/disability/disability-benefits-quebec-pension-plan)), and if you have a severe and prolonged impairment, the [Disability Tax Credit](https://www.canada.ca/en/revenue-agency/services/tax/individuals/segments/tax-credits-deductions-persons-disabilities/disability-tax-credit.html) can lower the income tax you pay. Crohn’s and Colitis Canada’s webinar on [IBD in the workplace](https://crohnsandcolitis.ca/support-for-you/gutsy-learning-series/Past-Gutsy-Learning-Presentations/Gutsy-Learning-Events/navigating-crohns-and-colitis-in-the-workplace) covers telling your employer and asking for accommodations (changes at work that help you do your job). Family and caregivers. If you’re supporting someone with IBD, see [help for family and caregivers](https://www.ibdsupport.net/help/#supporting-someone-with-ibd), including peer support for caregivers. ## National Organizations ### [Crohn’s and Colitis Canada](https://crohnsandcolitis.ca/) National organization with chapters across Canada Based in Canada - Charity - Patient Advocacy - Health Consumer Organisation - Support Programs - Toilet Access Card - Educational Resources - Research Funding Crohn’s and Colitis Canada is the country’s only national, volunteer-based charity working to cure Crohn’s disease and ulcerative colitis and to improve life for everyone affected by them. Founded in 1974, it is Canada’s largest non-governmental funder of Crohn’s and colitis research, having put more than $150 million into research so far. Call the Help Centre on [1-800-387-1479](tel:+18003871479). Its free [GoHere app](https://crohnsandcolitis.ca/support-for-you/GoHere-Washroom-Access) maps washrooms in participating businesses and public buildings along your route, and includes a digital access card to show when you need one urgently. [Learn more about Crohn’s and Colitis Canada](https://crohnsandcolitis.ca/About-Us) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [61% of expenditure on programs, including research (FY2025)](https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/About-Us/Financial%20Statements/20251231-CCC_Signed_F-Final-F-S-Crohns-and-Colitis-Canada-pdf.pdf) ### [Canadian Digestive Health Foundation (CDHF)](https://cdhf.ca/) National foundation for digestive health Based in Canada - Patient Advocacy - Health Consumer Organisation - Educational Resources - Patient Support The Canadian Digestive Health Foundation (CDHF) sets out to make digestive health easier to understand. Working alongside gastroenterologists, dietitians, and scientists, it produces free, evidence-based resources (covering IBD and more than 20 other digestive conditions) to help Canadians make sense of their symptoms and manage their care. [Learn more about CDHF](https://cdhf.ca/en/about-cdhf/who-we-are/) ### [The GI Society (Canadian Society of Intestinal Research)](https://badgut.org/) National organization for gastrointestinal health Based in Canada - Patient Advocacy - Medical Research Organisation - Educational Resources - Patient Support The GI (Gastrointestinal) Society was formed in 2008 on the foundation of the Canadian Society of Intestinal Research (CSIR), founded in 1976 as the first registered charity in Canada devoted to gastrointestinal health. The Society provides medically sound, evidence-based information on GI diseases and disorders, including IBD, supports research, and publishes the quarterly Inside Tract® newsletter. [Learn more about the GI Society](https://badgut.org/about-us/) ## Ostomy and Pouch Support Some people with IBD have surgery that leaves them with an ostomy (an opening on the abdomen, with a pouch to collect waste) or an internal pouch made from the small bowel (a J-pouch). This organization supports people living with one. ### [Ostomy Canada Society](https://www.ostomycanada.ca/) National charity with local chapters across Canada Based in Mississauga, Canada - Charity - Patient Support Group - Peer Support - Educational Resources Ostomy Canada Society has supported Canadians living with an ostomy for more than 60 years. It has local chapters, a visitor program that connects you with a trained volunteer who has an ostomy, and a youth camp, along with information on getting financial help with supplies. [Find support near you](https://www.ostomycanada.ca/find-support/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [64% of expenditure on charitable programs (FY2025)](https://apps.cra-arc.gc.ca/ebci/hacc/srch/pub/dsplyRprtngPrd/119277093RR0001) ## For Children and Teens (US and Canada) Resources for children and teens with IBD and their parents. For school in the US, the Crohn’s & Colitis Foundation explains [school accommodations](https://www.crohnscolitisfoundation.org/justlikeme/living-with-crohns-and-colitis/school/school-accommodations), such as a 504 plan (a written plan of the support your child’s school will give), and how to ask for them. In Canada, Crohn’s and Colitis Canada’s [guide for teachers](https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/Support/2025-Teachers-Guide-Supporting-Students-with-Crohns-or-Colitis.pdf) covers practical matters such as washroom access and missed school. ### [North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)](https://naspghan.org/) Professional organization serving US, Canada, and Mexico Based in North America - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Educational Resources - Research Programs NASPGHAN (the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition) works to improve care for infants, children, and adolescents with digestive disorders, including IBD. It develops clinical practice guidelines, supports research, and produces educational resources for the health care professionals and families looking after children across North America. Its family website, [GIKids](https://gikids.org/inflammatory-bowel-disease/), explains IBD in children for parents and young people. ### [ImproveCareNow](https://www.improvecarenow.org/) Network of children’s IBD care centers, mostly in the US; its family resources are free to use anywhere Based in North America - Patient Support Group - Medical Research Organisation - Support Programs - Educational Resources - Research Programs ImproveCareNow is a network of pediatric IBD care centers, patients, and families working together to improve health and care for children and adolescents with Crohn’s disease and ulcerative colitis. Since it began in 2007, it has increased the number of children in remission. Its Patients & Families section offers tools for living with IBD, and patient and parent advisory councils help shape its work. [Read about ImproveCareNow’s purpose and results](https://www.improvecarenow.org/purpose-success) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [90% of expenses on program services (FY2025)](https://projects.propublica.org/nonprofits/organizations/203200488) ## Online Communities These are peer support communities: members share their own experiences and support each other. What you read there isn’t medical advice, so check anything about your own treatment with your doctor or IBD team. ### [Crohn’s and Colitis Connect](https://crohnsandcolitisconnect.ca/) Free national online community run by Crohn’s and Colitis Canada Based in Canada - Patient Support Group - Online Community - Peer Support - Peer Mentoring - Educational Resources Crohn’s and Colitis Connect is a free online community from Crohn’s and Colitis Canada that brings together people across Canada affected by IBD. Members (18+) can connect with trained peer mentors who have lived experience, take part in regular peer support events, share their stories, and access trusted information on treatment, nutrition, and mental health. ## For Health Professionals and Researchers These organizations work mainly with doctors, nurses, dietitians, and researchers. They are listed for completeness; if you live with IBD, the organizations above are usually the better place to start. ### [Canadian Association of Gastroenterology (CAG)](https://www.cag-acg.org/) National professional organization for gastroenterologists Based in Canada - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Research Programs The Canadian Association of Gastroenterology (CAG) is the national body for the gastroenterologists, hepatologists, and researchers who treat and study digestive disease in Canada. It backs their research, training, and advocacy, and writes the clinical practice guidelines that shape how IBD and other digestive diseases are managed across the country. [Learn more about CAG](https://www.cag-acg.org/) ### [IMAGINE (Inflammation, Microbiome, and Alimentation: Gastro-Intestinal and Neuropsychiatric Effects)](https://imaginespor.com/) National research network Based in Canada - Medical Research Organisation - Research Programs - Clinical Trials IMAGINE is a pan-Canadian research network studying how inflammation, the gut microbiome, and diet interact to affect gastrointestinal and mental health in people with IBD and irritable bowel syndrome (IBS). A Strategy for Patient-Oriented Research (SPOR) initiative funded through the Canadian Institutes of Health Research, it brings together patients, clinicians, and researchers from institutions across Canada to develop new therapies and improve outcomes. [Learn more about IMAGINE](https://imaginespor.com/) --- # Global Resources URL: https://www.ibdsupport.net/global/ Description: Global IBD and Crohn’s & Colitis resources available worldwide Resources listed on this page: - International Federation of Crohn’s & Ulcerative Colitis Associations (IFCCA): https://www.ifcca-ibd.org/ (International federation of 51 national IBD patient associations) - World Gastroenterology Organisation (WGO): https://www.worldgastroenterology.org/ (Global federation of more than 100 national member societies worldwide) - International Organization for the Study of Inflammatory Bowel Disease (IOIBD): https://www.ioibd.org/ (International research network spanning 6 continents) Your country doesn’t have its own page here? Start here. - Contact your national patient association for inflammatory bowel disease (IBD): IFCCA’s [list of member associations](https://www.ifcca-ibd.org/members) gives contact details for one in each member country. If your country isn’t on the list, ask your IBD team or hospital whether there is a local patient group. - To understand Crohn’s disease and ulcerative colitis, read [What is IBD?](https://www.ibdsupport.net/whatis/) or [find help by topic](https://www.ibdsupport.net/help/). Both apply wherever you live. - Feeling very unwell? See [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help) for when to contact a doctor the same day and when to call your local emergency number. - If you’re struggling to cope, [Find A Helpline](https://findahelpline.com/) lists free crisis lines in many countries. ## Global Organisations International organisations working on Crohn’s disease and ulcerative colitis, useful wherever you live. ### [International Federation of Crohn’s & Ulcerative Colitis Associations (IFCCA)](https://www.ifcca-ibd.org/) International federation of 51 national IBD patient associations Works worldwide - Patient Advocacy - Health Consumer Organisation - Educational Resources - Public Awareness IFCCA brings together 51 national Crohn’s and ulcerative colitis patient associations. Based in Brussels, it was known as EFCCA (the European Federation) until June 2025, when it became an international federation. It works to raise awareness and improve life for people with IBD, including through the IFCCA Magazine and its IFCCA Academy education programmes. It coordinates [World IBD Day](https://worldibdday.org/) on 19 May each year, with events in more than 50 countries. [Learn more about IFCCA](https://www.ifcca-ibd.org/about-ifcca) ## For Health Professionals and Researchers These organisations work mainly with doctors, nurses, dietitians and researchers. They are listed for completeness; if you live with IBD, the organisations above are usually the better place to start. ### [World Gastroenterology Organisation (WGO)](https://www.worldgastroenterology.org/) Global federation of more than 100 national member societies worldwide Works worldwide - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Educational Resources - Research Updates The World Gastroenterology Organisation (WGO) is a global federation of more than 100 national member societies working to improve digestive health worldwide by training healthcare providers. It develops and maintains the WGO Global Guidelines and Cascades (including guidance on IBD), which spell out best-practice care adapted to the resources each region actually has, and are translated into multiple languages. [Learn more about WGO](https://www.worldgastroenterology.org/who-we-are) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [See WGO’s 2025 Annual Report](https://www.worldgastroenterology.org/UserFiles/file/WGO-2025-Annual-Report.pdf) ### [International Organization for the Study of Inflammatory Bowel Disease (IOIBD)](https://www.ioibd.org/) International research network spanning 6 continents Works worldwide - Medical Research Organisation - Research Updates - Clinical Guidelines The International Organization for the Study of Inflammatory Bowel Disease (IOIBD) is an international group of clinicians and scientists advancing IBD care, education and research through collaboration across borders. Its members work in task forces (epidemiology, clinical trials, pathobiology, surgery) and shape the shared definitions of IBD, along with the treatment targets and endpoints used in everyday practice and in clinical trials. [Learn more about IOIBD](https://www.ioibd.org/) --- # New Zealand Resources URL: https://www.ibdsupport.net/nz/ Description: IBD and Crohn’s & Colitis Resources for New Zealand Resources listed on this page: - Crohn’s & Colitis New Zealand: https://crohnsandcolitis.org.nz/ (National organisation serving all of New Zealand) - Federation of New Zealand Ostomy Societies (Ostomy New Zealand): https://ostomy.org.nz/ (National body for New Zealand’s regional ostomy societies) - New Zealand Society of Gastroenterology (NZSG): https://nzsg.org.nz/ (National professional body for NZ gastroenterologists) - Crohn’s and Colitis New Zealand (Facebook): https://www.facebook.com/crohnscolitisnewzealand/ (Official Facebook community of Crohn’s & Colitis New Zealand) - Australia & New Zealand IBD Consortium (ANZIBDC): https://anzibdc.com/ (Collaborative research across Australia and New Zealand) Need to talk to someone? Call [Crohn’s & Colitis New Zealand’s](https://crohnsandcolitis.org.nz/contact+us) IBD Helpline on 0800 ASK IBD ([0800 275 423](tel:0800275423)). It doesn’t publish its phone hours. For health advice at any time, call [Healthline](https://www.healthnz.govt.nz/online-phone-healthcare/healthline) free on [0800 611 116](tel:0800611116) to talk to a nurse or paramedic. In an emergency, call [111](tel:111). If you feel very unwell, see [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help). If you’re struggling to cope, call or text [1737](tel:1737) at any time, or see [other free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines). ## IBD in New Zealand New Zealand has a high and rising rate of IBD. A [national study](https://onlinelibrary.wiley.com/doi/10.1111/imj.70291) published in the Internal Medicine Journal identified 19,566 New Zealanders living with IBD in 2021–22, or 391.4 per 100,000 people, with similar rates of Crohn’s disease and ulcerative colitis. There were 1,407 new diagnoses that year, or 28.1 per 100,000 people. Crohn’s & Colitis New Zealand estimates that around 20,000 New Zealanders live with these conditions, a number expected to keep rising. ## Getting care in New Zealand Where to start. If you think you might have IBD, start with a GP, who can arrange tests and refer you to a specialist. For free health advice at any time, call [Healthline](https://www.healthnz.govt.nz/online-phone-healthcare/healthline) on [0800 611 116](tel:0800611116) to talk to a nurse or paramedic. [Healthify](https://healthify.nz/health-a-z/i/inflammatory-bowel-disease/) has plain-language information about IBD. Paying for medicines. Pharmac decides which medicines are publicly funded in New Zealand. Several specialist IBD medicines are funded for people who meet its criteria, through a Special Authority that your doctor or IBD team applies for. Pharmac publishes its funding decisions, such as [its April 2025 decision to widen access to medicines for several conditions, including inflammatory bowel disease](https://www.pharmac.govt.nz/news-and-resources/news/2025-04-pharmac-to-fund-medicines-for-blood-cancers-inflammatory-bowel-disease-eczema-and-arthritis). Funded prescriptions from GPs, public hospitals and other approved providers usually cost up to [$5 an item](https://www.govt.nz/browse/health/gps-and-prescriptions/prescription-charges/), and some people pay nothing, depending on their age or a Community Services Card. A prescription from a private specialist outside the public system can cost $15 an item for adults. Once you or your family have collected 20 new prescription items since 1 February, you get a Prescription Subsidy Card and pay nothing for new prescriptions until the next 1 February: ask your pharmacist. Work and money. Eligible employees get 10 days’ paid sick leave a year; [Employment New Zealand](https://www.employment.govt.nz/leave-and-holidays/sick-leave) explains who qualifies. If IBD affects your work or adds to your health costs, [Work and Income](https://www.workandincome.govt.nz/eligibility/health-and-disability/index.html) may be able to help, for example with a [Disability Allowance](https://www.workandincome.govt.nz/products/a-z-benefits/disability-allowance.html) towards extra costs. Your doctor fills in a Disability Certificate for it. If you have to stop work because of your health, Work and Income explains the [support you may be able to get](https://www.workandincome.govt.nz/eligibility/lost-job/health-condition.html), such as Jobseeker Support. Family and carers. If you’re supporting someone with IBD, see [help for family and carers](https://www.ibdsupport.net/help/#supporting-someone-with-ibd), including support for carers themselves. What this page covers. New Zealand’s national IBD and stoma organisations, the national gastroenterology society, shared Australia and New Zealand research, and online communities. It isn’t a list of local services: Crohn’s & Colitis New Zealand’s local support groups and your GP are the best route to those. ## National Organisations ### [Crohn’s & Colitis New Zealand](https://crohnsandcolitis.org.nz/) National organisation serving all of New Zealand Based in New Zealand - Charity - Patient Advocacy - Health Consumer Organisation - Support Programs - IBD Helpline - Toilet Access Card - Educational Resources - Research Updates Crohn’s & Colitis New Zealand is there for around 20,000 New Zealanders living with IBD. It offers support services and educational resources, speaks up for patients, backs research and awareness of Crohn’s disease and ulcerative colitis, and runs a nationwide network of local support groups. Its [“I Can’t Wait” card](https://crohnsandcolitis.org.nz/rh%20%27i%20can%27t%20wait%27%20card) helps you ask to use a toilet quickly (your doctor fills in part of the application), and [Camp Purple](https://crohnsandcolitis.org.nz/about+camp+purple+live) is its summer camp for children and teenagers with IBD. Call its IBD Helpline free on 0800 ASK IBD ([0800 275 423](tel:0800275423)). [Learn more about Crohn’s & Colitis New Zealand](https://crohnsandcolitis.org.nz/about%20us) ## Stoma and Pouch Support Some people with IBD have surgery that leaves them with a stoma (an opening on the tummy, with a bag to collect waste) or an internal pouch made from the small bowel (a J-pouch). This organisation supports people living with one. ### [Federation of New Zealand Ostomy Societies (Ostomy New Zealand)](https://ostomy.org.nz/) National body for New Zealand’s regional ostomy societies Based in New Zealand - Charity - Patient Support Group - Peer Support - Educational Resources The Federation represents the regional ostomy societies around New Zealand. The societies offer peer support and regular catch-ups for people with a colostomy, ileostomy or urostomy, their families, and people facing this surgery. Its website has practical information on life with a stoma or a J-pouch, including food, clothing and going home from hospital. [Find your local society](https://ostomy.org.nz/find-support/) ## Online Communities These are peer support communities: members share their own experiences and support each other. What you read there isn’t medical advice, so check anything about your own treatment with your GP or IBD team. ### [Crohn’s and Colitis New Zealand (Facebook)](https://www.facebook.com/crohnscolitisnewzealand/) Official Facebook community of Crohn’s & Colitis New Zealand Based in New Zealand - Patient Support Group - Community Updates - Peer Support - Public Awareness The official Facebook page of Crohn’s & Colitis New Zealand shares news, events and support information for the New Zealand IBD community, and helps connect people affected by Crohn’s disease and ulcerative colitis with the charity’s network of local support groups across the country. ## For Health Professionals and Researchers These organisations work mainly with doctors, nurses, dietitians and researchers. They are listed for completeness; if you live with IBD, the organisations above are usually the better place to start. ### [New Zealand Society of Gastroenterology (NZSG)](https://nzsg.org.nz/) National professional body for NZ gastroenterologists Based in New Zealand - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Professional Development - Research Programs The New Zealand Society of Gastroenterology (NZSG) is the national professional body for gastroenterology in New Zealand. It develops clinical guidelines, supports research and professional development, and connects the healthcare professionals working in the field across the country. [Learn more about NZSG](https://nzsg.org.nz/about-us/about-nzsg/) ## Research in Australia and New Zealand ### [Australia & New Zealand IBD Consortium (ANZIBDC)](https://anzibdc.com/) Collaborative research across Australia and New Zealand Based in Australia & New Zealand - Medical Research Organisation - Research Institute - Research Programs - Clinical Trials - Research Collaboration The Australia and New Zealand Inflammatory Bowel Disease Consortium (ANZIBDC) is a network of doctors, scientists and companies working together on IBD research across Australia and New Zealand. Formed in 2008, it links 21 gastroenterology centres and runs a shared biobank, which lets researchers run multi-centre clinical trials, cohort studies and genetics research, and improve the quality of care for patients in both countries. --- # United Kingdom Resources URL: https://www.ibdsupport.net/uk/ Description: IBD and Crohn’s & Colitis Resources for the United Kingdom Resources listed on this page: - Crohn’s & Colitis UK: https://www.crohnsandcolitis.org.uk/ (National organisation serving all UK regions) - CICRA (Crohn’s in Childhood Research Association): https://www.cicra.org/ (UK-wide support for children with IBD and their families) - IBD UK: https://ibduk.org/ (UK-wide partnership setting the standards for IBD care) - Guts UK: https://gutscharity.org.uk/ (National charity for the whole digestive system) - Colostomy UK: https://www.colostomyuk.org/ (National charity for anyone living with a stoma) - Ileostomy and Internal Pouch Association (IA): https://iasupport.org/ (National charity for people with an ileostomy or internal pouch) - British Society of Gastroenterology (BSG): https://www.bsg.org.uk/ (National professional body for UK gastroenterologists) - Crohn’s & Colitis UK Forum (Facebook): https://www.facebook.com/groups/CCUKforum (Official online community of Crohn’s & Colitis UK) - European Crohn’s and Colitis Organisation (ECCO): https://www.ecco-ibd.eu/ (European organisation for IBD specialists in the UK and other European countries) Need to talk to someone? Call Crohn’s & Colitis UK’s helpline on [0300 222 5700](tel:03002225700), 10am to 3pm, Monday to Friday. At other times, in England, Scotland or Wales, call [111](tel:111) for urgent advice (NHS 111, or NHS 24 in Scotland). In Northern Ireland, contact your [GP out of hours service](https://www.nidirect.gov.uk/articles/gp-out-hours-service). In an emergency, call [999](tel:999). If you feel very unwell, see [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help). If you’re struggling to cope, call Samaritans on [116 123](tel:116123) at any time, or see [other free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines). ## IBD in the United Kingdom More than half a million people in the UK, or 0.81% of the population (1 in 123), live with Crohn’s disease or ulcerative colitis, nearly double the 300,000 previously estimated. The figure comes from a [University of Nottingham study](https://www.crohnsandcolitis.org.uk/news-stories/news-items/new-research-shows-over-1-in-123-people-in-uk-living-with-crohn-s-or-colitis), the largest of its kind and funded by Crohn’s & Colitis UK and Coeliac UK, which also found the rate rising to 1 in 67 among people aged over 70. ## Getting care in the UK Where to start. If you think you might have IBD, start with a GP, who can arrange tests and refer you to a hospital IBD team. When your GP surgery is closed, get urgent advice from [NHS 111](https://www.nhs.uk/nhs-services/urgent-and-emergency-care-services/when-to-use-111/) in England, [NHS 111 Wales](https://111.wales.nhs.uk/), [NHS 24](https://www.nhs24.scot/) (call [111](tel:111)) in Scotland, or the [GP out of hours service](https://www.nidirect.gov.uk/articles/gp-out-hours-service) in Northern Ireland. Paying for medicines. Prescriptions are free in Scotland, Wales and Northern Ireland. In England most adults pay a charge for each item, and Crohn’s disease and ulcerative colitis are not on the exemption list; a Prescription Prepayment Certificate caps the cost if you need regular medicines. In England, if you have a permanent colostomy or ileostomy that needs a continuous surgical dressing or an appliance (such as a stoma bag), you can get a [medical exemption certificate](https://www.nhsbsa.nhs.uk/exemption-certificates/medical-exemption-certificates), which makes all your NHS prescriptions free: ask your GP for the form. Crohn’s & Colitis UK explains [prescription charges](https://www.crohnsandcolitis.org.uk/our-work/campaigns/policy-and-influencing/prescription-charges). Work and money. Crohn’s & Colitis UK explains [your rights at work](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/employment-and-education), including changes your employer can make to help you do your job (reasonable adjustments), and [money and financial support](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/benefits-and-finances/money-and-finding-financial-support), such as sick pay and benefits. GOV.UK explains [Statutory Sick Pay](https://www.gov.uk/statutory-sick-pay) from your employer and [Access to Work](https://www.gov.uk/access-to-work), which can help you get or stay in work. If your health means you can’t work, or can only work a little, you may be able to get [Employment and Support Allowance](https://www.gov.uk/employment-support-allowance) or [Universal Credit](https://www.gov.uk/universal-credit). [Personal Independence Payment](https://www.gov.uk/pip) can help with extra living costs. In Scotland, apply for [Adult Disability Payment](https://www.mygov.scot/adult-disability-payment) instead. In Northern Ireland, see nidirect for [ESA](https://www.nidirect.gov.uk/articles/employment-and-support-allowance), [Universal Credit (NI)](https://www.nidirect.gov.uk/campaigns/universal-credit), [PIP](https://www.nidirect.gov.uk/articles/personal-independence-payment-pip) and [Access to Work (NI)](https://www.nidirect.gov.uk/articles/access-work-ni-practical-help-work). Family and carers. If you’re supporting someone with IBD, see [help for family and carers](https://www.ibdsupport.net/help/#supporting-someone-with-ibd), including support for carers themselves. ## National Organisations ### [Crohn’s & Colitis UK](https://www.crohnsandcolitis.org.uk/) National organisation serving all UK regions Based in Hatfield, United Kingdom - Charity - Patient Advocacy - Health Consumer Organisation - Support Programs - IBD Helpline - Toilet Access Card - Educational Resources - Research Updates Crohn’s & Colitis UK is the UK’s national charity for people affected by Crohn’s disease and ulcerative colitis. It runs a helpline and support services, funds research, and campaigns to raise awareness and push for better IBD care and treatment across the UK. Call the helpline on [0300 222 5700](tel:03002225700). Membership includes a [Can’t Wait card](https://www.crohnsandcolitis.org.uk/get-involved/become-a-member/cant-wait-card) to show staff when you urgently need a toilet. [Learn more about Crohn’s & Colitis UK](https://www.crohnsandcolitis.org.uk/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [65% of expenditure on charitable activities (FY2025)](https://www.crohnsandcolitis.org.uk/media/z5qnoqyy/crohns-and-colitis-uk_2025-205881101.pdf) ### [CICRA (Crohn’s in Childhood Research Association)](https://www.cicra.org/) UK-wide support for children with IBD and their families Based in United Kingdom - Charity - Patient Advocacy - Medical Research Organisation - Support Programs - Research Funding - Educational Resources CICRA (Crohn’s in Childhood Research Association) is a charity working for better lives for children and young people with Crohn’s disease and ulcerative colitis. It funds and manages research into childhood IBD, produces information and educational resources, and supports families through emotional wellbeing programmes, family information days, and work with schools and colleges. [Learn more about CICRA](https://www.cicra.org/about-us/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [80% of expenditure on charitable activities (FY2025)](https://www.cicra.org/media/swrb1gm0/2025-reports-accounts.pdf) ### [IBD UK](https://ibduk.org/) UK-wide partnership setting the standards for IBD care Based in United Kingdom - Patient Advocacy - Health Professional Body - Clinical Guidelines - Public Awareness IBD UK (the IBD UK Alliance) is a partnership of 16 organisations, including Crohn’s & Colitis UK and the British Society of Gastroenterology, working together to improve care and treatment for everyone affected by IBD. It publishes the IBD UK Standards, which set out the care that adults and children with Crohn’s disease or ulcerative colitis should expect from their health services; the latest edition was published in 2026. [Learn more about IBD UK](https://ibduk.org/) ### [Guts UK](https://gutscharity.org.uk/) National charity for the whole digestive system Based in United Kingdom - Charity - Medical Research Organisation - Research Funding - Educational Resources Guts UK is the UK’s national charity for the digestive system (registered charity no. 1137029). It funds medical research across the whole digestive system and publishes expert information on more than 40 digestive conditions, including [Crohn’s disease](https://gutscharity.org.uk/advice-and-information/conditions/crohns-disease/) and [ulcerative colitis](https://gutscharity.org.uk/advice-and-information/conditions/ulcerative-colitis/). [Learn more about Guts UK](https://gutscharity.org.uk/about-us/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [79% of expenditure on charitable activities (FY2025)](https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5010608/financial-history) ## Stoma and Pouch Support Some people with IBD have surgery that leaves them with a stoma (an opening on the tummy, with a bag to collect waste) or an internal pouch made from the small bowel (a J-pouch). These charities support people living with one. ### [Colostomy UK](https://www.colostomyuk.org/) National charity for anyone living with a stoma Based in United Kingdom - Charity - Patient Support Group - Stoma Helpline - Peer Support - Educational Resources Despite its name, Colostomy UK supports anyone with a stoma, including an ileostomy. Its free Stoma Helpline is open every day of the year, 9am to 10pm, on [0800 328 4257](tel:08003284257). It also has factsheets on managing a stoma, a telephone befriending service, a Facebook support group and its magazine, Tidings. [Learn more about Colostomy UK](https://www.colostomyuk.org/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [97% of expenditure on charitable activities (FY2024)](https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/4021141/financial-history) ### [Ileostomy and Internal Pouch Association (IA)](https://iasupport.org/) National charity for people with an ileostomy or internal pouch Based in United Kingdom - Charity - Patient Support Group - Peer Support - Educational Resources IA supports people living with an ileostomy or an internal pouch (J-pouch), and their families, friends and carers. Its One2One volunteers have lived with an ileostomy or pouch for at least 18 months and are trained to talk through surgery and life afterwards. It also runs information days and has advice on travelling with a stoma or pouch. Call [0800 018 4724](tel:08000184724). [Learn more about IA](https://iasupport.org/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [96% of expenditure on charitable activities (FY2025)](https://register-of-charities.charitycommission.gov.uk/en/charity-search/-/charity-details/5099345/accounts-and-annual-returns) ## Online Communities These are peer support communities: members share their own experiences and support each other. What you read there isn’t medical advice, so check anything about your own treatment with your GP or IBD team. ### [Crohn’s & Colitis UK Forum (Facebook)](https://www.facebook.com/groups/CCUKforum) Official online community of Crohn’s & Colitis UK Based in United Kingdom - Patient Support Group - Peer Support - Actively moderated The Crohn’s & Colitis UK Forum is the charity’s official Facebook community for anyone affected by Crohn’s or colitis, a space to share experiences and ask questions, moderated by Crohn’s & Colitis UK staff Monday to Friday, 9am to 5pm (excluding UK bank holidays). The charity also runs a separate Facebook community for healthcare professionals involved in IBD care. ## For Health Professionals and Researchers These organisations work mainly with doctors, nurses, dietitians and researchers. They are listed for completeness; if you live with IBD, the organisations above are usually the better place to start. ### [British Society of Gastroenterology (BSG)](https://www.bsg.org.uk/) National professional body for UK gastroenterologists Based in London, United Kingdom - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Patient Resources - Research Programs The British Society of Gastroenterology (BSG) promotes gastroenterology and hepatology across the UK. Founded in 1937, it represents the physicians, surgeons, pathologists, scientists, nurses and dietitians who work in the field, and today has more than 4,000 members. It develops evidence-based clinical guidelines, supports research, shapes the UK gastroenterology training curriculum, and co-owns medical journals including Gut. [Learn more about BSG](https://www.bsg.org.uk/about/) ## For IBD Specialists in Europe ### [European Crohn’s and Colitis Organisation (ECCO)](https://www.ecco-ibd.eu/) European organisation for IBD specialists in the UK and other European countries Based in Europe - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Research Programs - Educational Resources The European Crohn’s and Colitis Organisation (ECCO) is a non-profit focused entirely on inflammatory bowel disease. Founded in 2001, it has grown into Europe’s main forum for IBD specialists, producing the clinical guidelines, research and education that support healthcare professionals and, in turn, patients across the continent. --- # United States Resources URL: https://www.ibdsupport.net/us/ Description: IBD and Crohn’s & Colitis Resources for the United States Resources listed on this page: - Crohn’s & Colitis Foundation: https://www.crohnscolitisfoundation.org/ (National organization with local chapters across the US) - Color of Gastrointestinal Illnesses (COGI): https://colorofgi.org/ (National organization for people of color living with IBD) - National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK): https://www.niddk.nih.gov/health-information/digestive-diseases/crohns-disease (Federal research agency) - United Ostomy Associations of America (UOAA): https://www.ostomy.org/ (National organization with more than 260 affiliated support groups) - American Gastroenterological Association (AGA): https://gastro.org/ (National professional organization for gastroenterologists) - North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN): https://naspghan.org/ (Professional organization serving US, Canada, and Mexico) - ImproveCareNow: https://www.improvecarenow.org/ (Network of children’s IBD care centers, mostly in the US; its family resources are free to use anywhere) - Crohn’s & Colitis Foundation: Community & Support: https://www.crohnscolitisfoundation.org/patientsandcaregivers/community-support (Official patient community and peer support from the US national charity) Need to talk to someone? Call the Crohn’s & Colitis Foundation’s IBD Help Center on [888-694-8872](tel:+18886948872) (option 8). You can leave a message at any time, and the [Help Center page](https://www.crohnscolitisfoundation.org/community-support/the-ibd-help-center) lists its email and live chat hours. It gives information, not medical care: if you need medical advice outside your doctor’s office hours, call their after-hours line. In an emergency, call [911](tel:911). If you feel very unwell, see [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help). If you’re struggling to cope, call or text [988](tel:988) at any time, or see [other free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines). ## IBD in the United States IBD affects close to 1 in 100 Americans. A CDC-funded study led by the Crohn’s & Colitis Foundation (the [INPUT study](https://www.crohnscolitisfoundation.org/groundbreaking-study-led-the-crohns-colitis-foundation-estimates-nearly-1-100-americans-has)) found IBD diagnosed in more than 0.7% of the US population (about 721 per 100,000 people), corresponding to an estimated 2.4 million Americans, including [more than 100,000 children and adolescents](https://www.crohnscolitisfoundation.org/landmark-study-reveals-over-100000-american-youth-living-with-inflammatory-bowel-disease). ## Getting care in the US Where to start. If you think you might have IBD, start with a primary care provider, who can refer you to a gastroenterologist (a specialist in the gut and digestive system). If your child might have IBD, ask your doctor for a referral to a pediatric gastroenterologist (a children’s gut specialist), as [GIKids](https://gikids.org/digestive-topics/crohns-disease/) advises; see also [resources for children and teens](https://www.ibdsupport.net/us/#for-children-and-teens-us-and-canada). Check whether your insurance plan needs a referral before you see a gastroenterologist. Some tests, procedures, and medicines also need your plan’s approval first (prior authorization). Paying for care. Most people are covered through an employer plan, [Medicare](https://www.medicare.gov/) (age 65 and over, or with some disabilities), Medicaid or CHIP (lower incomes, and children), or a plan from the [Health Insurance Marketplace](https://www.healthcare.gov/). If you have Medicare Part D, your out-of-pocket spending on prescriptions covered by Part D is [capped each year](https://www.cms.gov/newsroom/fact-sheets/final-cy-2026-part-d-redesign-program-instructions) ($2,100 in 2026); other medical costs follow different rules. Insurance rules and copays can affect which treatment you get and when. The Crohn’s & Colitis Foundation’s [Managing the Cost of IBD](https://www.crohnscolitisfoundation.org/patientsandcaregivers/managing-the-cost-of-ibd) pages explain health insurance and list financial assistance programs, and its IBD Help Center ([888-694-8872](tel:+18886948872), option 8) can help you understand your coverage. Work and money. If you are eligible, the Family and Medical Leave Act (FMLA) gives you up to 12 weeks of unpaid, job-protected leave, and the Americans with Disabilities Act (ADA) may entitle you to reasonable accommodations at work (changes that help you do your job). The Crohn’s & Colitis Foundation’s [employee and employer resources](https://www.crohnscolitisfoundation.org/patientsandcaregivers/managing-the-cost-of-ibd/employee-and-employer-resources) explain both. If you have worked long enough and can’t work because of a condition that is expected to last at least a year, [Social Security Disability Insurance](https://www.ssa.gov/disability/eligibility) (SSDI) may help. If you have little or no income or resources, [Supplemental Security Income](https://www.ssa.gov/ssi) (SSI) may help, whether or not you have worked. Family and caregivers. If you’re supporting someone with IBD, see [help for family and caregivers](https://www.ibdsupport.net/help/#supporting-someone-with-ibd), including peer support for caregivers. ## National Organizations ### [Crohn’s & Colitis Foundation](https://www.crohnscolitisfoundation.org/) National organization with local chapters across the US Based in New York, United States - Charity - Patient Advocacy - Health Consumer Organisation - Support Programs - Educational Resources - Research Funding The Crohn’s & Colitis Foundation is a nonprofit, founded in 1967, that funds research toward cures for Crohn’s disease and ulcerative colitis and helps children and adults live better with them. It has invested more than $500 million in research, and runs education programs and support services for patients and the professionals who treat them. Its IBD Help Center answers questions on [888-694-8872](tel:+18886948872) (option 8). [Learn more about the Crohn’s & Colitis Foundation](https://www.crohnscolitisfoundation.org/about) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [Over 80 cents of every dollar goes to research, education, and patient support services (FY2024)](https://www.crohnscolitisfoundation.org/about/our-financials) ### [Color of Gastrointestinal Illnesses (COGI)](https://colorofgi.org/) National organization for people of color living with IBD Based in Glenarden, MD, United States - Charity - Patient Advocacy - Support Network - Peer Support - Educational Resources COGI works to improve life for Black, Indigenous, and people of color (BIPOC) living with IBD and other digestive conditions, through community, research, education, and advocacy. Founded in 2019 as Color of Crohn’s and Chronic Illness (COCCI), it offers free membership for patients and care partners, Facebook support groups, a newsletter, educational events, and a podcast. [Learn more about COGI](https://colorofgi.org/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [67% of expenses on program services (FY2023)](https://projects.propublica.org/nonprofits/organizations/844605680) ### [National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)](https://www.niddk.nih.gov/health-information/digestive-diseases/crohns-disease) Federal research agency Based in United States - Government Body - Medical Research Organisation - Research Funding - Educational Resources - Clinical Trials The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the US National Institutes of Health (NIH), conducts and supports research on many common long-term conditions, including inflammatory bowel disease. It provides evidence-based health information, funds research, and supports clinical trials related to Crohn’s disease and ulcerative colitis. [Learn more about NIDDK’s digestive health information](https://www.niddk.nih.gov/health-information/digestive-diseases) ## Ostomy and Pouch Support Some people with IBD have surgery that leaves them with an ostomy (an opening on the abdomen, with a pouch to collect waste) or an internal pouch made from the small bowel (a J-pouch). This organization supports people living with one. ### [United Ostomy Associations of America (UOAA)](https://www.ostomy.org/) National organization with more than 260 affiliated support groups Based in United States - Charity - Patient Advocacy - Patient Support Group - Peer Support - Educational Resources UOAA supports people who have had, or will have, ostomy or continent diversion surgery (an internal pouch instead of a bag), including a J-pouch. Its Support Group Finder lists more than 260 affiliated groups across the US, and its website has information on living with an ostomy, with sections on Crohn’s disease, ulcerative colitis, and J-pouches. It also runs a virtual ostomy clinic. Call [800-826-0826](tel:+18008260826), Monday through Friday, 9 a.m. to 3 p.m. Eastern (until 2 p.m. on Wednesdays). [Learn more about UOAA](https://www.ostomy.org/) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [78% of expenses on program services (FY2025)](https://projects.propublica.org/nonprofits/organizations/134310726) ## For Children and Teens (US and Canada) Resources for children and teens with IBD and their parents. For school in the US, the Crohn’s & Colitis Foundation explains [school accommodations](https://www.crohnscolitisfoundation.org/justlikeme/living-with-crohns-and-colitis/school/school-accommodations), such as a 504 plan (a written plan of the support your child’s school will give), and how to ask for them. In Canada, Crohn’s and Colitis Canada’s [guide for teachers](https://crohnsandcolitis.ca/Crohns_and_Colitis/documents/Support/2025-Teachers-Guide-Supporting-Students-with-Crohns-or-Colitis.pdf) covers practical matters such as washroom access and missed school. ### [North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)](https://naspghan.org/) Professional organization serving US, Canada, and Mexico Based in North America - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Educational Resources - Research Programs NASPGHAN (the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition) works to improve care for infants, children, and adolescents with digestive disorders, including IBD. It develops clinical practice guidelines, supports research, and produces educational resources for the health care professionals and families looking after children across North America. Its family website, [GIKids](https://gikids.org/inflammatory-bowel-disease/), explains IBD in children for parents and young people. ### [ImproveCareNow](https://www.improvecarenow.org/) Network of children’s IBD care centers, mostly in the US; its family resources are free to use anywhere Based in North America - Patient Support Group - Medical Research Organisation - Support Programs - Educational Resources - Research Programs ImproveCareNow is a network of pediatric IBD care centers, patients, and families working together to improve health and care for children and adolescents with Crohn’s disease and ulcerative colitis. Since it began in 2007, it has increased the number of children in remission. Its Patients & Families section offers tools for living with IBD, and patient and parent advisory councils help shape its work. [Read about ImproveCareNow’s purpose and results](https://www.improvecarenow.org/purpose-success) [Financial transparency](https://www.ibdsupport.net/about/#financial-figures): [90% of expenses on program services (FY2025)](https://projects.propublica.org/nonprofits/organizations/203200488) ## Online Communities These are peer support communities: members share their own experiences and support each other. What you read there isn’t medical advice, so check anything about your own treatment with your doctor or IBD team. ### [Crohn’s & Colitis Foundation: Community & Support](https://www.crohnscolitisfoundation.org/patientsandcaregivers/community-support) Official patient community and peer support from the US national charity Based in United States - Patient Support Group - Health Consumer Organisation - Peer Support - Support Group Finder The Crohn’s & Colitis Foundation connects patients, families, and caregivers through local and online support groups and its Power of Two program, which pairs people who are newly diagnosed or facing treatment decisions with trained volunteers who live with IBD for one-on-one peer mentoring. ## For Health Professionals and Researchers These organizations work mainly with doctors, nurses, dietitians, and researchers. They are listed for completeness; if you live with IBD, the organizations above are usually the better place to start. ### [American Gastroenterological Association (AGA)](https://gastro.org/) National professional organization for gastroenterologists Based in Bethesda, United States - Health Professional Body - Medical Research Organisation - Clinical Guidelines - Patient Resources - Research Programs For patients and families, the American Gastroenterological Association (AGA) runs an [IBD Resource Center](https://patient.gastro.org/ibd-resource-center/) on its patient website, with plain-language information on Crohn’s disease and ulcerative colitis. The AGA itself is the professional body for gastroenterology in the US: founded in 1897, it has more than 16,000 members worldwide and publishes medical journals and clinical guidelines. [Learn more about AGA](https://gastro.org/about-aga/about-us/) --- # What do you need help with? URL: https://www.ibdsupport.net/help/ Description: Start here: find the right information or organisation for what you need, from possible symptoms and a new diagnosis to treatment, everyday life, children, stoma support, emotional support, carers and helplines Feeling very unwell? See [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help): the signs that mean you should contact a doctor the same day, or call emergency services. If you’re struggling to cope, [free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines) are open day and night. ## Getting a diagnosis ### [I think I might have IBD](https://www.ibdsupport.net/whatis/#could-it-be-ibd) When to see a GP (family doctor), which symptoms need an urgent appointment and the tests you can expect. ### [I’ve just been diagnosed](https://www.ibdsupport.net/whatis/#just-diagnosed) Practical first steps after a diagnosis of Crohn’s disease or ulcerative colitis. ## Understanding and treating IBD ### [Understanding Crohn’s and colitis](https://www.ibdsupport.net/whatis/) What IBD is, [how Crohn’s disease and ulcerative colitis differ](https://www.ibdsupport.net/whatis/#how-do-they-differ), and [how it can affect the rest of the body](https://www.ibdsupport.net/whatis/#effects-outside-the-gut-extraintestinal-manifestations). ### My symptoms are getting worse If your symptoms are getting worse or your treatment isn’t helping, contact your GP or IBD team. If you’re getting worse quickly, feel very unwell or are worried, [check the urgent-help signs now](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help). ### Getting care and paying for medicines How to find care where you live, and how medicines are paid for: [Australia](https://www.ibdsupport.net/au/#getting-care-in-australia), [Canada](https://www.ibdsupport.net/ca/#getting-care-in-canada), [New Zealand](https://www.ibdsupport.net/nz/#getting-care-in-new-zealand), the [United Kingdom](https://www.ibdsupport.net/uk/#getting-care-in-the-uk) and the [United States](https://www.ibdsupport.net/us/#getting-care-in-the-us). ### [Treatments and surgery](https://www.ibdsupport.net/whatis/#treatment) The main types of treatment, and [what surgery involves](https://www.ibdsupport.net/whatis/#surgery) for Crohn’s disease and for ulcerative colitis. ## Everyday life ### [Looking after yourself](https://www.ibdsupport.net/whatis/#looking-after-yourself) [Food and diet](https://www.ibdsupport.net/whatis/#food-and-diet), [mental health](https://www.ibdsupport.net/whatis/#mental-health), [vaccinations](https://www.ibdsupport.net/whatis/#vaccinations), [pregnancy](https://www.ibdsupport.net/whatis/#pregnancy) and [travel guides from the national charities](https://www.ibdsupport.net/whatis/#recommended-reading). ### Work and money Your rights at work, time off and help with costs: [Australia](https://www.ibdsupport.net/au/#work-and-money), [Canada](https://www.ibdsupport.net/ca/#work-and-money), [New Zealand](https://www.ibdsupport.net/nz/#work-and-money), the [United Kingdom](https://www.ibdsupport.net/uk/#work-and-money) and the [United States](https://www.ibdsupport.net/us/#work-and-money). ### Stoma and pouch support Charities for people living with a stoma or a J-pouch: [Australia](https://www.ibdsupport.net/au/#stoma-and-pouch-support), [Canada](https://www.ibdsupport.net/ca/#ostomy-and-pouch-support), [New Zealand](https://www.ibdsupport.net/nz/#stoma-and-pouch-support), the [United Kingdom](https://www.ibdsupport.net/uk/#stoma-and-pouch-support) and the [United States](https://www.ibdsupport.net/us/#ostomy-and-pouch-support). ### Children and young people Youth programmes and school support in [Australia](https://www.ibdsupport.net/au/#children-and-teens); resources for children and teens, including school, in [Canada](https://www.ibdsupport.net/ca/#for-children-and-teens-us-and-canada) and the [United States](https://www.ibdsupport.net/us/#for-children-and-teens-us-and-canada); [Camp Purple](https://www.ibdsupport.net/nz/#national-organisations), a camp for young people with IBD in New Zealand; and [CICRA](https://www.ibdsupport.net/uk/#national-organisations) in the UK. ## Support and organisations ### Talk to someone IBD helplines: Australia [1800 138 029](tel:1800138029) (press 1), Canada [1-800-387-1479](tel:+18003871479) (or its [online form](https://crohnsandcolitis.ca/support-for-you/help-centre)), New Zealand 0800 ASK IBD ([0800 275 423](tel:0800275423)), United Kingdom [0300 222 5700](tel:03002225700), United States [888-694-8872](tel:+18886948872) (option 8). Most are open on weekdays only. At other times, call a free health advice line: healthdirect on [1800 022 222](tel:1800022222) (Australia), [811](tel:811) (most of Canada; in Manitoba, Health Links on [1-888-315-9257](tel:+18883159257)), Healthline on [0800 611 116](tel:0800611116) (New Zealand) or [111](tel:111) (England, Scotland and Wales; in Northern Ireland, your [GP out of hours service](https://www.nidirect.gov.uk/articles/gp-out-hours-service)); in the United States, call your doctor’s after-hours number. If you’re struggling to cope, [free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines) are open day and night. ### Emotional and peer support Feeling anxious or low is common with IBD: see [looking after your mental health](https://www.ibdsupport.net/whatis/#mental-health). If you feel you can’t cope, [free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines) are open day and night. Online communities where people living with IBD support each other are listed for [Australia](https://www.ibdsupport.net/au/#online-communities), [Canada](https://www.ibdsupport.net/ca/#online-communities), [New Zealand](https://www.ibdsupport.net/nz/#online-communities), the [United Kingdom](https://www.ibdsupport.net/uk/#online-communities) and the [United States](https://www.ibdsupport.net/us/#online-communities). The IBD helplines can also talk things through. ### Supporting someone with IBD For family, friends and carers: Crohn’s & Colitis UK’s [guide to supporting someone](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/supporting-someone) and Crohn’s & Colitis Australia’s [supporting someone with IBD](https://crohnsandcolitis.org.au/living-with-crohns-colitis/supporting-someone-with-ibd/). Crohn’s & Colitis UK’s helpline also talks to family and friends. Peer support for carers: - Australia: Crohn’s & Colitis Australia’s [Connect with a peer](https://crohnsandcolitis.org.au/support/connect-with-a-peer/) service is open to carers too. - Canada: Crohn’s and Colitis Canada runs an online [peer support group for carers](https://crohnsandcolitis.ca/support-for-you/peer-support). - United States: the Crohn’s & Colitis Foundation lists [support organisations for carers](https://www.crohnscolitisfoundation.org/patientsandcaregivers/community-support/caregiver-support-organizations). Looking after someone can be tiring. National carers’ organisations support carers themselves: [Carers Australia](https://www.carersaustralia.com.au/), [Carers NZ](https://carers.net.nz/) and [Carers UK](https://www.carersuk.org/). ### Organisations in my country National charities, support groups and other organisations for [Australia](https://www.ibdsupport.net/au/), [Canada](https://www.ibdsupport.net/ca/), [New Zealand](https://www.ibdsupport.net/nz/), the [United Kingdom](https://www.ibdsupport.net/uk/) and the [United States](https://www.ibdsupport.net/us/). Somewhere else? See [Global resources](https://www.ibdsupport.net/global/). --- # What is IBD, Crohn’s and Colitis? URL: https://www.ibdsupport.net/whatis/ Description: Understanding inflammatory bowel disease (IBD): how Crohn’s disease and ulcerative colitis differ, their symptoms, diagnosis and treatment Feeling very unwell? See [when to get urgent help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help): the signs that mean you should contact a doctor the same day, or call emergency services. If you’re struggling to cope, see [free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines), open day and night. Inflammatory bowel disease (IBD) is an umbrella term for conditions that cause long-term inflammation of the gut (the gastrointestinal, or digestive, tract). Crohn’s disease and ulcerative colitis are the two main types of IBD.[[1]](https://www.ibdsupport.net/whatis/#reference-1) When someone has features of both and doctors can’t yet tell which one it is, it is called IBD unclassified (IBD-U). You may also see the older name, indeterminate colitis. Microscopic colitis is a related condition: the bowel looks normal during a colonoscopy (a camera test of the large bowel), and the inflammation only shows up under a microscope. It is usually treated as a separate condition rather than a type of IBD. Some conditions (such as Behçet’s disease) can cause gut symptoms that look very like IBD, but doctors treat them as separate conditions. These conditions are characterised by periods of active disease (flares) and periods of remission (when symptoms are reduced or absent). Looking for something specific? [Find help](https://www.ibdsupport.net/help/) by topic, from symptoms to support. The health information on this page comes from the patient charities and health services listed under References. It has not been reviewed by a clinician: read [how the health information is prepared](https://www.ibdsupport.net/about/#where-the-health-information-comes-from). ## What is Crohn’s Disease? Crohn’s disease is a type of IBD that can affect any part of the gut, from the mouth to the anus, but most commonly affects the end of the small intestine (ileum) and the beginning of the colon. In Crohn’s disease: - Inflammation may extend through all layers of the bowel wall[[2]](https://www.ibdsupport.net/whatis/#reference-2) - Affected areas may be patchy, with healthy sections in between (known as “skip lesions”) - Common symptoms include abdominal pain, diarrhoea, fatigue, weight loss and malnutrition - Complications can include strictures (narrowing of the intestine), fistulas (abnormal connections between organs), and abscesses[[3]](https://www.ibdsupport.net/whatis/#reference-3) ## What is Ulcerative Colitis? Ulcerative colitis is a type of IBD that affects only the colon (large intestine) and rectum. In ulcerative colitis: - Inflammation is typically limited to the innermost lining of the colon[[4]](https://www.ibdsupport.net/whatis/#reference-4) - The inflammation is continuous, starting from the rectum and potentially extending throughout the colon - Common symptoms include bloody diarrhoea, abdominal cramping, a sudden and urgent need to go to the toilet (bowel urgency), and fatigue - Complications can include severe bleeding, toxic megacolon (a dangerously swollen colon), and an increased risk of colorectal cancer[[5]](https://www.ibdsupport.net/whatis/#reference-5) ## How Are They Related? Both Crohn’s disease and ulcerative colitis: - Are chronic inflammatory conditions of the digestive tract - Have similar symptoms and can have a big effect on daily life - Are thought to happen when the immune system overreacts to something in the environment, in people whose genes make them more likely to get IBD[[6]](https://www.ibdsupport.net/whatis/#reference-6) - Have no known cure, but treatments can help manage symptoms and achieve remission - Can start at any age, but are most often diagnosed in young adults: Crohn’s disease most commonly before the age of 30, and ulcerative colitis between 20 and 40[[7]](https://www.ibdsupport.net/whatis/#reference-7)[[10]](https://www.ibdsupport.net/whatis/#reference-10) More detail: what causes IBD: In medical terms, IBD is thought to come from an abnormal immune response to triggers in the environment, in people whose genes make them susceptible.[[6]](https://www.ibdsupport.net/whatis/#reference-6) Researchers have found more than 200 genetic variations that affect the risk of developing Crohn’s disease, and many are in genes that control the immune system. Changes in these genes may alter how the immune system responds to bacteria in the gut, and together with other genetic and environmental factors they can lead to ongoing inflammation. More research is needed to know for certain what causes it.[[7]](https://www.ibdsupport.net/whatis/#reference-7) ## How Do They Differ? Despite their similarities, there are important differences between Crohn’s disease and ulcerative colitis: Crohn’s disease and ulcerative colitis compared: | Feature | Crohn’s Disease | Ulcerative Colitis | | --- | --- | --- | | Location | Can affect any part of the GI tract | Limited to the colon and rectum | | Pattern | Patchy inflammation with skip lesions | Continuous inflammation | | Depth | Can affect all layers of the bowel wall | Typically affects only the innermost lining | | Complications | Strictures, fistulas, abscesses | Severe bleeding, toxic megacolon | | Surgery | Offered when medicines aren’t controlling symptoms, for complications such as a narrowed section of gut or an abscess, or by choice. Common operations widen a narrowed section, or remove the damaged section and join the healthy ends back together. Some people need a stoma, where waste leaves through an opening on the tummy into a bag; it can be temporary or permanent. Surgery cannot cure Crohn’s disease, which can come back in another part of the gut, but most people find life is better afterwards. Around 1 in 5 people need major surgery within 5 years of diagnosis.[[21]](https://www.ibdsupport.net/whatis/#reference-21) | Offered when medicines aren’t controlling symptoms, for severe complications, or by choice. Removing the whole large bowel (the colon and rectum) means colitis can’t come back in the gut, though some symptoms outside the gut can continue. Afterwards, waste leaves through a stoma into a bag, or is stored in an internal pouch made from the small bowel (a J-pouch). Around 7 in 100 people need major surgery within 5 years of diagnosis.[[22]](https://www.ibdsupport.net/whatis/#reference-22) | More detail: types of Crohn’s disease and ulcerative colitis: Doctors describe both conditions by where they are in the gut. Crohn’s disease is most common in the small bowel and the colon. Crohn’s in the small bowel is called ileitis (or jejunoileitis, depending on the part affected), and Crohn’s in the area around the anus is called perianal Crohn’s. Perianal symptoms can come on their own or with inflammation elsewhere in the gut.[[7]](https://www.ibdsupport.net/whatis/#reference-7) Ulcerative colitis is described by how far up the large bowel it reaches:[[10]](https://www.ibdsupport.net/whatis/#reference-10) - Proctitis: only the rectum, the lowest part of the large bowel. About 1 in 10 people with proctitis later develop colitis that affects most of the colon. - Proctosigmoiditis: the rectum and the part of the colon next to it (the sigmoid colon). - Left-sided or distal colitis: the rectum and the left side of the colon (the descending colon). - Extensive colitis: most of the colon, but not all of it. - Total colitis, also called pancolitis: the whole colon. ### Surgery Surgery is offered when medicines aren’t controlling symptoms, or for complications, and some people choose it rather than trying more medicines. For Crohn’s disease it removes the damaged part of the gut, which can ease symptoms but doesn’t cure the condition. For ulcerative colitis, removing the whole large bowel means colitis can’t come back in the gut. The “Surgery” row of the table above has more detail on each.[[21]](https://www.ibdsupport.net/whatis/#reference-21)[[22]](https://www.ibdsupport.net/whatis/#reference-22) Some operations leave you with a stoma (called an ostomy in North America): an opening on your tummy, with a bag to collect waste.[[19]](https://www.ibdsupport.net/whatis/#reference-19)[[20]](https://www.ibdsupport.net/whatis/#reference-20) A stoma can be temporary or permanent, in either condition, and some people with ulcerative colitis have an internal pouch made from the small bowel (a J-pouch) instead.[[21]](https://www.ibdsupport.net/whatis/#reference-21)[[22]](https://www.ibdsupport.net/whatis/#reference-22) Stoma and ostomy charities can put you in touch with people who have been through it: see stoma and pouch support for [Australia](https://www.ibdsupport.net/au/#stoma-and-pouch-support), [Canada](https://www.ibdsupport.net/ca/#ostomy-and-pouch-support), [New Zealand](https://www.ibdsupport.net/nz/#stoma-and-pouch-support), the [United Kingdom](https://www.ibdsupport.net/uk/#stoma-and-pouch-support) and the [United States](https://www.ibdsupport.net/us/#ostomy-and-pouch-support). ## Could It Be IBD? See a GP (your family doctor) if you think you could have Crohn’s disease or ulcerative colitis, for example because you have some of the symptoms described above. Ask for an urgent appointment if your poo is black or dark red or you have bloody diarrhoea, and see [When to Get Urgent Help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help) for the signs that need emergency care. If your GP thinks you could have IBD, they may arrange blood tests and a test on a sample of your poo, and refer you to a specialist in hospital for more tests to confirm it.[[19]](https://www.ibdsupport.net/whatis/#reference-19)[[20]](https://www.ibdsupport.net/whatis/#reference-20) ## When to Get Urgent Help Contact your doctor or IBD team (the hospital specialists and nurses who look after your IBD) the same day if you have symptoms of Crohn’s disease or ulcerative colitis and:[[19]](https://www.ibdsupport.net/whatis/#reference-19)[[20]](https://www.ibdsupport.net/whatis/#reference-20) - your poo is black or dark red, or you have very bad or bloody diarrhoea - you have a high temperature, or feel hot, cold or shivery - you have a fast heartbeat - you can’t pass wind or poo - your symptoms are getting worse quickly, or you’re worried about them If you can’t reach them, for example at night or at the weekend, call the free health advice line where you live: - Australia: healthdirect on [1800 022 222](tel:1800022222), anywhere in Australia. In Queensland only, you can also call 13 HEALTH on [13 43 25 84](tel:134325). - Canada: [811](tel:811) in most provinces and territories. In Manitoba, call Health Links – Info Santé on [1-888-315-9257](tel:+18883159257) ([204-788-8200](tel:+12047888200) in Winnipeg). - New Zealand: Healthline on [0800 611 116](tel:0800611116). - United Kingdom: [111](tel:111) in England, Scotland and Wales (NHS 111, or NHS 24 in Scotland). In Northern Ireland, contact your [GP out of hours service](https://www.nidirect.gov.uk/articles/gp-out-hours-service) instead. - United States: there is no national advice line; call your doctor’s after-hours number. Call emergency services or go to an emergency department if:[[20]](https://www.ibdsupport.net/whatis/#reference-20) - you have severe tummy pain - you’re bleeding from your bottom and it won’t stop - there’s a lot of blood or there are large clots when you poo - you’re vomiting blood or poo, or your vomit looks like coffee grounds or soil Emergency numbers: Australia [000](tel:000); Canada and the United States [911](tel:911) (Nunavut and some remote communities have no 911 service: use your community’s local emergency number); New Zealand [111](tel:111); United Kingdom [999](tel:999). Anywhere else, call your local emergency number. Don’t drive yourself: ask someone to take you, or call an ambulance. If you’re having thoughts of harming yourself, or feel you can’t cope, see the [free crisis lines](https://www.ibdsupport.net/whatis/#crisis-lines) you can call or text at any time. ## Diagnosis Diagnosing IBD usually needs an endoscopy, where a doctor looks inside your gut using a thin, flexible tube with a camera on the end. This also helps tell Crohn’s disease and ulcerative colitis apart. Reaching a diagnosis may involve a combination of: - Medical history and physical examination - Blood tests to check for anaemia, inflammation markers and antibodies - Stool tests to rule out infections and check for inflammation - Imaging studies such as computed tomography (CT) scans, magnetic resonance imaging (MRI) and intestinal ultrasound (IUS)[[8]](https://www.ibdsupport.net/whatis/#reference-8) - Endoscopy: a colonoscopy (of the large bowel), a gastroscopy, also called an upper endoscopy (of the food pipe, stomach and first part of the small bowel), or both More detail: the hospital tests: There is no single test for Crohn’s disease, and a diagnosis often takes time because the symptoms vary and can be like those of other conditions. Hospital tests may include:[[19]](https://www.ibdsupport.net/whatis/#reference-19) - Endoscopy: a thin tube with a small camera is passed through your bottom or your throat to look inside your gut. A colonoscopy looks at the large bowel; a gastroscopy (upper endoscopy) looks at the food pipe, stomach and the start of the small bowel. - A biopsy: a small sample of tissue taken from your gut during the endoscopy. - Scans, such as an MRI, CT or ultrasound scan. ## Treatment There is no single treatment for IBD. Your IBD team will work with you to find the combination that suits you, which may include: - Aminosalicylates (5-ASAs), such as mesalazine, which calm inflammation in the gut lining - Steroids, such as prednisolone or budesonide, for short periods to bring a flare under control - Immunosuppressants, such as azathioprine, mercaptopurine and methotrexate, which damp down the immune system - Biologic therapies: medicines made from living cells that block specific parts of the immune system; the main types (TNF inhibitors, integrin inhibitors and interleukin inhibitors) are explained below - Small molecule drugs: medicines taken by mouth, such as JAK inhibitors, and for ulcerative colitis, S1P receptor modulators - Nutritional therapy, such as a liquid-only formula diet for several weeks (exclusive enteral nutrition), which is often used for children with Crohn’s disease - Antibiotics - Surgery: see [what surgery involves](https://www.ibdsupport.net/whatis/#surgery)[[9]](https://www.ibdsupport.net/whatis/#reference-9)[[24]](https://www.ibdsupport.net/whatis/#reference-24) More detail: how the medicines work: Each type of medicine calms inflammation in a different way:[[24]](https://www.ibdsupport.net/whatis/#reference-24) - Aminosalicylates (5-ASAs), such as mesalazine, work directly on the bowel lining. They are not immunosuppressants, so they don’t affect how the immune system works in the rest of your body. - Steroids, such as prednisolone and budesonide, lower the activity of the immune system, which brings inflammation down. They are usually given as a short course to control a flare. - Azathioprine and mercaptopurine (thiopurines) lower the activity of the immune system, which reduces inflammation in the gut. They can be taken on their own, or alongside a biologic such as adalimumab or infliximab to help the biologic work properly. They can take 3 months or more to start working. - Methotrexate also changes the way the immune system works. It is used mainly for Crohn’s disease. It is taken once a week, usually with folic acid to reduce side effects. - TNF inhibitors (anti-TNFs), such as infliximab and adalimumab, block a protein called TNF-alpha. Your body makes TNF-alpha to fight infections, but too much of it can damage the cells that line the gut. - Vedolizumab, an integrin inhibitor, sticks to a protein called integrin on the surface of white blood cells that enter the gut. Blocking integrin stops those cells getting into the gut, so it is called gut-selective. - Interleukin inhibitors block interleukins, proteins that help control the immune system. Ustekinumab blocks interleukins 12 and 23 (IL-12 and IL-23), and risankizumab blocks IL-23. - JAK inhibitors, such as tofacitinib, block proteins called Janus kinases (JAKs) that help switch on the immune response. Because they block specific proteins, they are called targeted medicines. - S1P receptor modulators, such as ozanimod, stop a type of white blood cell (a lymphocyte) travelling around the body and into the gut. They are used for ulcerative colitis. Some people take two medicines together, for example adalimumab with azathioprine or methotrexate. This is called combination therapy.[[24]](https://www.ibdsupport.net/whatis/#reference-24) Medicines can have side effects. In Australia, every prescription medicine has a Consumer Medicine Information (CMI) leaflet that explains how to take it and lists its known side effects. It is often inside the medicine packaging, or you can ask your pharmacist or doctor to print it for you. If you are unsure about a medicine, talk to your doctor or pharmacist.[[26]](https://www.ibdsupport.net/whatis/#reference-26) ## Living with IBD Crohn’s disease and ulcerative colitis are lifelong conditions, and there is no cure yet. Most people have times when their symptoms are under control (remission) between flares.[[7]](https://www.ibdsupport.net/whatis/#reference-7)[[10]](https://www.ibdsupport.net/whatis/#reference-10) Your IBD team, and the organisations listed for your country, can help you live well with it. ## Just Diagnosed Hearing that you have Crohn’s disease or ulcerative colitis can be a lot to take in, and it’s natural to have lots of questions. Take it at your own pace. Some practical first steps:[[23]](https://www.ibdsupport.net/whatis/#reference-23) - Find out whether your hospital or clinic has IBD nurses (specialist nurses who look after people with IBD) and how to contact them. They can help with questions between appointments. - Tell your GP about your diagnosis and where you’ll be receiving your IBD care. - There are many different medicines for Crohn’s and colitis, and it may take some time to find the one that works for you. - Look after yourself. Tiredness (fatigue) is common, and a new diagnosis can affect how you feel, so it’s OK to take time for yourself. The sections below cover food, mental health and other everyday questions. - Get in touch with the national IBD charity where you live. Many run a helpline, and they can put you in touch with other people who understand. [Find the organisations for your country](https://www.ibdsupport.net/). ## Looking After Yourself Living with IBD is about more than medicines. These everyday topics come up for most people at some point. ### Mental Health Feeling anxious or low is common with IBD. A review that pooled 77 studies found symptoms of anxiety in about 1 in 3 people with IBD (32%) and symptoms of depression in about 1 in 4 (25%).[[12]](https://www.ibdsupport.net/whatis/#reference-12) If you’re struggling, tell your GP or IBD team, just as you would about any other symptom. If you feel you can’t cope, or you’re having thoughts of harming yourself, you can talk to someone now. These lines are open day and night, and calls are free: - Australia: [Lifeline](https://www.lifeline.org.au/) on [13 11 14](tel:131114), text [0477 13 11 14](sms:0477131114) or [chat online](https://www.lifeline.org.au/chat) - Canada: the [9-8-8 Suicide Crisis Helpline](https://988.ca/), call or text [9-8-8](tel:988) - New Zealand: call or text [1737](tel:1737) (the [Need to talk?](https://1737.org.nz/) service) - United Kingdom and Ireland: [Samaritans](https://www.samaritans.org/) on [116 123](tel:116123) - United States: the [988 Suicide & Crisis Lifeline](https://988lifeline.org/), call or text [988](tel:988) - Anywhere else: [Find A Helpline](https://findahelpline.com/) lists free crisis lines in many countries If your life is in danger, call your emergency number now (see [When to Get Urgent Help](https://www.ibdsupport.net/whatis/#when-to-get-urgent-help)). ### Smoking Smoking increases the risk of developing Crohn’s disease and makes Crohn’s disease worse. If you have Crohn’s, it’s never too late to quit: once you stop, your chances of a flare or of needing surgery become the same as someone who doesn’t smoke. People who smoke are less likely to develop ulcerative colitis, but that doesn’t make smoking safe or helpful, and everyone with Crohn’s disease, ulcerative colitis or microscopic colitis is advised not to smoke.[[13]](https://www.ibdsupport.net/whatis/#reference-13) ### Food and Diet There is no evidence that any particular diet can cure Crohn’s disease or ulcerative colitis, and what works for one person might not work for another. Try to eat a healthy, balanced diet. Experts don’t recommend cutting out whole foods or food groups, because you could miss out on nutrients your body needs, so speak to your GP, IBD team or a dietitian before making any big changes.[[14]](https://www.ibdsupport.net/whatis/#reference-14) ### Vaccinations Many IBD medicines suppress your immune system (they are immunosuppressants): steroids, azathioprine, mercaptopurine, methotrexate, biologics, JAK inhibitors and S1P receptor modulators. Aminosalicylates (5-ASAs) are not. If you take an immunosuppressant, you should not have any “live” vaccines, such as the MMR, chickenpox, yellow fever or nasal spray flu vaccines. Non-live vaccines, including the flu injection, COVID-19 vaccines, the pneumococcal vaccine and the non-live shingles vaccine, are safe to have.[[15]](https://www.ibdsupport.net/whatis/#reference-15) Whether you count as immunosuppressed can depend on the medicine, the dose, how long you have taken it and what you take with it, so check with your IBD team before having any live vaccine.[[25]](https://www.ibdsupport.net/whatis/#reference-25) Some medicines, such as infliximab, may make the flu and COVID-19 vaccines work less well.[[16]](https://www.ibdsupport.net/whatis/#reference-16) Ask your IBD team which vaccines are right for you. ### Pregnancy Most women with Crohn’s disease or ulcerative colitis can expect straightforward pregnancies and healthy babies. Complications are more likely if the condition is active during pregnancy, so many women are advised to keep taking their medicines to keep it under control. Many IBD medicines are considered safe to take during pregnancy, but always talk to your IBD team before you stop, start or change a medicine. A few medicines are not suitable during pregnancy, including methotrexate, mycophenolate, JAK inhibitors (tofacitinib, filgotinib and upadacitinib) and S1P receptor modulators (ozanimod and etrasimod). If you become pregnant while taking one of these, contact your IBD team straight away for advice. Don’t stop or change any medicine on your own unless your doctor or IBD team tells you to. If you can’t reach your IBD team, speak to your GP. If you can, speak to your IBD team before you start trying for a baby.[[17]](https://www.ibdsupport.net/whatis/#reference-17) ### Bowel Cancer Checks Having ulcerative colitis that reaches beyond the rectum, or Crohn’s disease that affects your colon (the large bowel), can make bowel cancer more likely. Colitis that affects only the rectum (proctitis), and Crohn’s disease that doesn’t affect the colon, don’t raise this risk. Treatment has the best chance of working when bowel cancer is found early, and a regular check-up colonoscopy (surveillance colonoscopy) is the best way to find it early. Your first check is usually offered about 8 years after your symptoms started, or when you are diagnosed if you also have primary sclerosing cholangitis (PSC, a liver condition). Your IBD team should tell you when you need your checks.[[18]](https://www.ibdsupport.net/whatis/#reference-18) ## Effects Outside the Gut (Extraintestinal Manifestations) IBD can cause inflammation and symptoms in other parts of the body too. Doctors call these extraintestinal manifestations (EIMs), which simply means effects outside the gut. A review that pooled 52 studies involving more than 352,000 patients found that about 24% of all people with IBD experience at least one joint, skin or eye EIM, rising to 35% in Crohn’s disease and 27% in ulcerative colitis.[[11]](https://www.ibdsupport.net/whatis/#reference-11) EIMs can affect several parts of the body. The main sites include: - Joints: arthritis in the joints of the arms and legs (peripheral arthritis), and inflammation of the spine and the joints where the spine meets the pelvis (axial arthritis, including sacroiliitis and ankylosing spondylitis), are the most common - Skin: erythema nodosum (tender red nodules, typically on the shins) and pyoderma gangrenosum (deep, painful skin ulcers) - Eyes: inflammation inside the eye (uveitis) or of the white of the eye (episcleritis), which can cause eye pain, redness and blurred vision - Liver and bile ducts: primary sclerosing cholangitis (PSC), scarring of the tubes that carry bile from the liver, which occurs more commonly in ulcerative colitis These effects can appear before IBD is diagnosed, during a flare or when your gut is settled, and they often need care from another specialist alongside your IBD (gastroenterology) team. ## Recommended Reading If you’d like to read more about the topics above, these resources explain IBD in plain, everyday language. They’re written for patients and families rather than clinicians. Understanding your condition - MedlinePlus, from the US National Library of Medicine, offers clear, ad-free overviews of [Crohn’s disease](https://medlineplus.gov/crohnsdisease.html) and [ulcerative colitis](https://medlineplus.gov/ulcerativecolitis.html), with links to trusted further reading. - Mayo Clinic has easy-to-read guides to [Crohn’s disease](https://www.mayoclinic.org/diseases-conditions/crohns-disease/symptoms-causes/syc-20353304) and [ulcerative colitis](https://www.mayoclinic.org/diseases-conditions/ulcerative-colitis/symptoms-causes/syc-20353326), plus a side-by-side [comparison of the two conditions](https://www.mayoclinic.org/diseases-conditions/inflammatory-bowel-disease/in-depth/ulcerative-colitis-vs-crohns-disease/art-20590269). Health information for your country - Australia: healthdirect, the government-funded health information service, explains [inflammatory bowel disease](https://www.healthdirect.gov.au/inflammatory-bowel-disease-ibd), and Crohn’s & Colitis Australia has [information and a helpline](https://crohnsandcolitis.org.au/). - Canada: Crohn’s and Colitis Canada explains [Crohn’s disease and colitis](https://crohnsandcolitis.ca/about-crohn-s-colitis) and how to find support. - New Zealand: Healthify, New Zealand’s health information website, covers [inflammatory bowel disease](https://healthify.nz/health-a-z/i/inflammatory-bowel-disease/), [Crohn’s disease](https://healthify.nz/health-a-z/c/crohns-disease/) and [ulcerative colitis](https://healthify.nz/health-a-z/u/ulcerative-colitis/). - United Kingdom: the NHS explains [inflammatory bowel disease](https://www.nhs.uk/conditions/inflammatory-bowel-disease/), and Crohn’s & Colitis UK has [detailed information on living with Crohn’s and colitis](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis). - United States: see MedlinePlus above. Living with IBD and finding support - Travelling with IBD: Crohn’s & Colitis [Australia](https://crohnsandcolitis.org.au/living-with-crohns-colitis/lifestyle/travel/), Crohn’s & Colitis [UK](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/living-with-crohns-or-colitis/travelling-with-crohns-or-colitis) and Crohn’s and Colitis [Canada](https://crohnsandcolitis.ca/About-Crohn-s-Colitis/IBD-Journey/Travel-and-Lifestyle) each have practical travel guides, covering things like travel insurance and vaccinations. - [World IBD Day](https://worldibdday.org/) is a global awareness day (19 May) run by patient organisations in more than 50 countries, with personal stories and support for the millions of people living with IBD worldwide. We look over this page at least once a year, and check phone numbers, opening hours and costs every month. ## References [1] Alatab S, Sepanlou SG, Ikuta K, et al. [The global, regional, and national burden of inflammatory bowel disease in 195 countries and territories, 1990–2017: a systematic analysis for the Global Burden of Disease Study 2017](https://doi.org/10.1016/S2468-1253(19)30333-4). Lancet Gastroenterol Hepatol. 2020;5(1):17-30. doi:10.1016/S2468-1253(19)30333-4 [2] Baumgart DC, Sandborn WJ. [Crohn’s disease](https://doi.org/10.1016/S0140-6736(12)60026-9). Lancet. 2012;380(9853):1590-1605. doi:10.1016/S0140-6736(12)60026-9 [3] Dolinger M, Torres J, Vermeire S. [Crohn’s disease](https://doi.org/10.1016/S0140-6736(23)02586-2). Lancet. 2024;403(10432):1177-1191. doi:10.1016/S0140-6736(23)02586-2 [4] Le Berre C, Honap S, Peyrin-Biroulet L. [Ulcerative colitis](https://doi.org/10.1016/S0140-6736(23)00966-2). Lancet. 2023;402(10401):571-584. doi:10.1016/S0140-6736(23)00966-2 [5] Danese S, Fiocchi C. [Ulcerative colitis](https://doi.org/10.1056/NEJMra1102942). N Engl J Med. 2011;365(18):1713-1725. doi:10.1056/NEJMra1102942 [6] Khor B, Gardet A, Xavier RJ. [Genetics and pathogenesis of inflammatory bowel disease](https://doi.org/10.1038/nature10209). Nature. 2011;474(7351):307-317. doi:10.1038/nature10209 [7] Crohn’s & Colitis UK. [Crohn’s Disease](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/understanding-crohns-and-colitis/crohns-disease). Accessed September 2026. [8] Maaser C, Sturm A, Vavricka SR, et al. [ECCO-ESGAR Guideline for Diagnostic Assessment in IBD Part 1: Initial diagnosis, monitoring of known IBD, detection of complications](https://doi.org/10.1093/ecco-jcc/jjy113). J Crohns Colitis. 2019;13(2):144-164. doi:10.1093/ecco-jcc/jjy113 [9] Gordon H, Minozzi S, Kopylov U, et al. [ECCO Guidelines on Therapeutics in Crohn’s Disease: Medical Treatment](https://doi.org/10.1093/ecco-jcc/jjae091). J Crohns Colitis. 2024;18(10):1531-1555. doi:10.1093/ecco-jcc/jjae091 [10] Crohn’s & Colitis UK. [Ulcerative Colitis](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/understanding-crohns-and-colitis/ulcerative-colitis). Accessed September 2026. [11] Kilic Y, Kamal S, Jaffar F, Sriranganathan D, Quraishi MN, Segal JP. [Prevalence of Extraintestinal Manifestations in Inflammatory Bowel Disease: A Systematic Review and Meta-analysis](https://doi.org/10.1093/ibd/izad061). Inflamm Bowel Dis. 2024;30(2):230-239. doi:10.1093/ibd/izad061 [12] Barberio B, Zamani M, Black CJ, Savarino EV, Ford AC. [Prevalence of symptoms of anxiety and depression in patients with inflammatory bowel disease: a systematic review and meta-analysis](https://doi.org/10.1016/S2468-1253(21)00014-5). Lancet Gastroenterol Hepatol. 2021;6(5):359-370. doi:10.1016/S2468-1253(21)00014-5 [13] Crohn’s & Colitis UK. [Smoking or vaping and Crohn’s Disease, Ulcerative Colitis or Microscopic Colitis (IBD)](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/living-with-crohns-or-colitis/smoking-or-vaping-with-crohns-or-colitis). Accessed September 2026. [14] Crohn’s & Colitis UK. [Food and Crohn’s or Colitis](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/living-with-crohns-or-colitis/food). Accessed September 2026. [15] Crohn’s & Colitis UK. [Precautions with immunosuppressants](https://www.crohnsandcolitis.org.uk/media/sf1l5tiy/immunosuppressant-precautions-ed-1-2023-final.pdf) (PDF). 2023. [16] Crohn’s & Colitis UK. [Infliximab](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/infliximab). Accessed September 2026. [17] Crohn’s & Colitis UK. [Pregnancy and birth with Crohn’s Disease or Ulcerative Colitis (IBD)](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/living-with-crohns-or-colitis/pregnancy-and-birth). Accessed September 2026. [18] Crohn’s & Colitis UK. [Risk of bowel cancer and other gut-related cancers](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/surgery-and-complications/risk-of-bowel-cancer-and-other-gut-related-cancers). Accessed September 2026. [19] NHS. [Crohn’s disease](https://www.nhs.uk/conditions/crohns-disease/). Accessed September 2026. [20] NHS. [Ulcerative colitis](https://www.nhs.uk/conditions/ulcerative-colitis/). Accessed September 2026. [21] Crohn’s & Colitis UK. [Surgery for Crohn’s Disease](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/surgery-and-complications/surgery-for-crohns-disease). Accessed September 2026. [22] Crohn’s & Colitis UK. [Surgery for Ulcerative Colitis](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/surgery-and-complications/surgery-for-ulcerative-colitis). Accessed September 2026. [23] Crohn’s & Colitis UK. [Newly diagnosed with Crohn’s or Colitis](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/living-with-crohns-or-colitis/newly-diagnosed). Accessed September 2026. [24] Crohn’s & Colitis UK. Treatment information: [5-ASAs](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/5-asas-aminosalicylates), [steroids](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/steroids), [azathioprine and mercaptopurine](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/azathioprine-and-mercaptopurine), [methotrexate](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/methotrexate), [adalimumab](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/adalimumab), [vedolizumab](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/vedolizumab), [ustekinumab](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/ustekinumab), [risankizumab](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/risankizumab), [tofacitinib](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/tofacitinib) and [ozanimod](https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/treatments/ozanimod). Accessed October 2026. [25] Crohn’s & Colitis UK. [Further changes to the shingles vaccination programme 2025](https://www.crohnsandcolitis.org.uk/shingles-vaccine) (which doses of IBD medicines count as immunosuppressed). Accessed October 2026. [26] healthdirect. [How to read Consumer Medicine Information (CMI)](https://www.healthdirect.gov.au/how-to-read-cmis). Accessed October 2026. --- # Support an Australian IBD Organisation URL: https://www.ibdsupport.net/au/donate/ Description: Compare Australian Crohn’s disease and ulcerative colitis organisations by what matters to you, and find the right one to support with a donation. If you want to donate to a cause related to inflammatory bowel disease (IBD) in Australia, it isn’t always obvious where your money will do the most good. Some organisations run helplines and support groups, some fund laboratory research, some focus on educating patients and health professionals, and some spend their time lobbying government for better care and funding. Some do a mix of these. Tell us what you care about most below, and the list will reorder to put the closest matches first. Nothing here is sponsored: every organisation listed already appears on the main [Australian resources page](https://www.ibdsupport.net/au/), and where we have checked a charity’s spending figure against its published accounts, such as the share of its spending that goes on programs, it’s shown on its card. A figure like that shows where money goes, not how much good an organisation does. Some of these organisations receive funding from pharmaceutical companies, as many patient organisations do, and it is published in their annual reports or in the companies’ own reports. It makes no difference to whether or where an organisation appears here. ---