On this page you’ll find all the resources I would recommend to IBD and ostomy patients to help them feel comfortable wherever they are in their journey. You’ll find a selection of resources on a variety of topics. Please note that this page will contain links. I am not affiliated with any of the businesses mentioned.
National Institute for Health and Care Excellence [NICE] Guidance for IBD.
Includes all NICE products on inflammatory bowel disease. Includes any guidance, advice, NICE Pathways and quality standards. Can search by keyword or sort by type of product. Sets out the full medical guidelines for diagnosis, management, remission and drug therapies. Regularly updated.
IBD Standards
The standards are designed to ensure that people with IBD receive safe, consistent, high-quality, personalised care, whatever their age and wherever they live in the UK. They stipulate what high-quality care should look like at every point of a patient’s journey – including The IBD service, pre-diagnosis, newly diagnosed, flare management, surgery, inpatient care and ongoing care & monitoring
Crohn’s and Colitis UK Support
A dedicated space for accessing support through the national charities support network and ongoing events. Their confidential services provide practical information and support, whether you have Crohn’s or Colitis yourself or know someone who does. Includes emotional and wellbeing support, Covid-19 support, guidance on appointments, and their guides on Crohn’s Disease and Colitis.
Flare Pathways
A collaboration between Crohn’s and Colitis UK and The Royal College of General Practitioners [RCPG] for the Inflammatory Bowel Disease Toolkit. Information specifically designed to help those medical professionals in general practice navigate the correct or better pathway for IBD patients under their care. Includes visual and textual information about how to refer patients to GI departments, how to manage specific medications and how to triage patients to appropriate care if unwell.
Publications
An extensive catalogue of information from Crohn’s and Colitis UK. Ranging from tests and procedures, all the way through to all the individual medication information, as well as understanding symptoms, surgery, employment, study and financial help. Can be downloaded for future use and are regularly updated through collaborations with their Readers Panel.
Bowel Research UK
Founded in 2020 following a merger between two well-respected charities: Bowel & Cancer Research and Bowel Disease Research Foundation (BDRF), they are the UK’s leading specialist bowel cancer and bowel disease research charity. Over a million suffer from bowel disease in the UK. By researching cutting edge treatments and investing in the best science, they are saving and improving people’s lives.
IBD Relief
Created in 2015 by Seb Tucknott and Emily Bridges after his 2008 UC diagnosis. IBD Relief is now a digital hub for information, support and education about IBD. In recent years it has also become a social enterprise – a company that looks to tackle social problems, improve communities, people’s life chances or the environment. The site features real-life stories, surveys to help research as well as information about mental and emotional wellbeing.
IBD Passport
IBD Passport is a multi-award winning non-profit website and the first of its kind that aims to support individuals with Crohn’s Disease and Ulcerative Colitis (Inflammatory Bowel Disease) who plan to travel by educating and informing sufferers of these diseases. It supports IBD patients who plan to travel, by providing a reputable source of information, orchestrating logistic resources overseas, networking global IBD centres, with the overall aim to help IBD patients overcome the disease-related limitations to travel
GLAD Study
The Genetic Links to Anxiety and Depression [GLAD] Study looks at the genetics behind anxiety and depression. 1 in 3 will experience mental health symptoms at some point in their lifetime. The GLAD Study aims to better understand depression and anxiety in order to find effective treatments and improve the lives of people experiencing these disorders.
Colostomy UK
Colostomy UK is a charity that supports and empowers people living with a stoma. They are there if you have questions, need support or just want to talk to someone who lives with a stoma. They run projects to empower ostomates to return to sports, hobbies and other interests and give them the confidence to take up fresh challenges. They advocate for ostomates’ rights and their voice on the bigger issues. Supporting and enhancing ostomates wellbeing is at the core of everything they do.
Crohn’s and Colitis UK Biologic Medicines
A new drug frontier, this dedicated page contains all you’d want to know about biologic medications for IBD. It includes and looks at the different biologics available for CD and UC, how the medications work, stopping or changing treatment and biosimilars.
