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Resources to help you feel informed.

When others are involved in making decisions about you, it’s important that you have as much information as possible too. There are a number of ways you can find out more about your own situation.

Your IBD Centre

For information from your local team, please visit their website or use the contact information they have provided.

If you receive care from Sheffield IBD Centre, you can get in touch with your IBD team by calling 0114 2712209 on Mondays to Fridays 9 - 11am. At other times you can leave a voicemail message which will be responded to within one working day. For more general information you can visit the website:

Some of the team at Sheffield IBD Centre

Crohn’s & Colitis UK

The Crohn’s & Colitis UK website and helpline can provide up-to- date, evidence-based information and can support you to live well with Crohn’s or Colitis.

The helpline and website can provide information on a range of subjects including:

  • Managing symptoms
  • Medication
  • Diet
  • Tests and diagnosis
  • Wellbeing
  • Employment
  • Disability benefits
  • Sex and relationships
  • Mental health

They can help you find support from others from the Crohn’s and Colitis community. They also signpost to sources of expert advice on disability benefits
and options for specialist emotional support.

Phone: 0300 222 5700
LiveChat on their website

Virtual social events

These provide opportunities to get to know other people in an informal setting, share experiences and potentially learn from others, but they are not intended to provide medical or professional advice. You may find just being with other people and realising that you are not alone can be reassuring. There are lots of ways to connect with people who understand what you’re going through.

Crohn’s & Colitis UK local networks

These support educational, awareness raising and fundraising activities. Family, friends and colleagues are also welcome at these events. You can also share your experiences with others, and find out news and on Facebook, Twitter and Instagram.

Reliable sources of information on the internet

As well as the Crohn’s & Colitis UK website, other charities that provide information include:

CICRA: better lives for children with Crohn’s and Colitis:

Ileostomy and Internal Pouch Association (known as IA):

The NHS website for England is the UK’s biggest health website, with more than 50 million visits every month. It is designed to help you take control of your health and wellbeing by providing safe, accurate and up to date information.

Social media is also an important part of the NHS website service, including Facebook, Twitter and YouTube.

Researchers at The University of Oxford have worked with people living with IBD to co-produce a website on sexual wellbeing and IBD:


You can contact your local library which helps to promote healthy living by providing self-management support, engagement opportunities and effective signposting. They can help you find information in print and online.

Records of your own health consultations

Making a note of the conversations you have with your IBD team can be really useful for referring back to later. You can keep records in your personalised care plan (if you have one) or you can use Crohn’s & Colitis UK appointments journal to record this information.

My appointments journal

What do I need to know?

When you are researching or learning about something new, it can feel a bit overwhelming. As you go through the information, try to record or write down the most important aspects which seem to fit your own personal situation. This will help you recall, and use, the knowledge that matters to you.

Information should be available to everyone in the way that they need it. Often there will be a telephone number or website link for receiving information in alternative formats - this might be in easy read, another language or for someone to talk to you about it.

If you don’t understand the information, ask for support. You have a right to have information in a way you can understand it.

Using the information

Once you have the information you can begin to use it to plan, to make a difference, or to ask questions in an appointment. You can also start to look at the skills you need to use this information most effectively to get your voice heard.

Remember you can contact organisations like Crohn’s & Colitis UK for information and support, and local advocacy groups which support people to be heard in decisions about their health, care, and wellbeing.

Knowing and using your rights

To be a good self advocate you need to know about your rights, and what you can expect from a service. IBD UK is a partnership of 17 professional bodies, royal colleges and patient organisations working together to improve care and treatment for everyone affected by Inflammatory Bowel Disease. Their main aim is to ensure that everyone with IBD has consistent, safe, high-quality personalised care, whatever their age and wherever they live in the UK. In 2019 they published the IBD standards, which define what good care should look like for people with IBD.

Here are some examples of the standards:

  • IBD team – Patients should be cared for by a defined IBD multidisciplinary team led by a named consultant adult or paediatric gastroenterologist (Statement 1.1)
  • Personalised care – A personalised care plan should be in place for every IBD patient, with access to an IBD nurse specialist and telephone/​email advice line (Statement 7.1).
  • Joined-up care – GPs should be informed of new diagnoses and the care plan that has been agreed within 48 hours (Statement 3.6).
  • Diagnosis - Patients who are referred with suspected IBD should be seen within four weeks, or more rapidly if clinically necessary (Statement 2.2).
  • Participation in decision-making – Patients should be supported to make informed, shared decisions about their treatment and care to ensure these take their preferences and goals fully into account (Statement 3.3)
  • Living with IBD – All patients with IBD should be provided with clear information to support self-management and early intervention in the case of a flare (Statement 4.2).
  • Considering all symptoms - Pain and fatigue are common symptoms for IBD patients and should be investigated and managed using a multidisciplinary approach including pharmacological, non-pharmacological and psychological interventions where appropriate (Statement 7.4)
  • Going into the hospital – All IBD inpatients should have access to an IBD nurse specialist (Statement 6.9)
  • Improving my service - Patients and parents/​carers should have a voice and direct involvement in the development of the service (Statement 1.7)

You can download a full copy of the IBD Standards from

Printed copies are also available on request from the Sheffield IBD Centre.