Newly diagnosed with Crohn's or Colitis

Last reviewed 01 August 2023

Hearing you have Crohn’s DiseaseUlcerative Colitis or Microscopic Colitis can be overwhelming, but there’s lots of support out there. Life will change, but it can also improve - and we’re here to help, every step of the way. Our practical to-do list will help you get started.

As well as the words 'Crohn's' and 'Colitis', you may also hear the term 'IBD' a lot. This stands for Inflammatory Bowel Disease. Crohn's Disease and Ulcerative Colitis are the two main forms of IBD.

If you think you might have Crohn's or Colitis but haven't had this confirmed yet, see our information on How to get a diagnosis.

If you’re a child or young person with Crohn’s or Colitis, see JJ’s tips on coping with Crohn’s or Colitis.

Last reviewed August 2023
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Key facts about being newly diagnosed with Crohn’s or Colitis

  • It’s natural to have lots of questions about how your condition will affect you. We have the information you need to find support, get answers, and take control.
  • Go through this list at your own pace and select the things you think would work for you.
  • You're not alone. There are lots of ways to connect with people who understand what you’re going through.
  • Find out if your hospital has IBD nurses and how to contact them. They are there to help if you have questions in between your appointments.
  • There’s a lot for you to process with a new diagnosis – and we’re here to help, every step of the way. Once you feel ready, there are plenty of ways you can get involved with the huge and diverse Crohn's and Colitis community.

1. Look after yourself

  • Take your time – there’s a lot to get your head around. Go through this list at your own pace and select the things you think would work for you.
  • Finding out you have a long-term condition can trigger lots of different feelings and emotions. Almost half of people living with Crohn’s or Colitis say it has affected their mental health. Our Mental health and wellbeing information can help you understand the ways your condition may affect you emotionally, and has tips on looking after yourself.
  • You may find that what you eat affects your symptoms. But it’s different for everybody. And there’s no evidence that following a particular diet can cure Crohn’s or Colitis. See our information on Food for how to eat well with Crohn’s or Colitis and make informed choices about your diet.
  • If you feel more tired than usual, you are not alone. Fatigue is a common symptom in people living with Crohn’s or Colitis. Remember that it's OK to take time for yourself. Watch our video below for top tips on coping with Fatigue.

2. Stay informed

Symptoms


3. When you’re ready, let others know

  • It Takes Guts to talk about Crohn’s and Colitis, but we’ve got the words to help you break the ice. Create your own personalised talking toolkit and start your conversation today.
  • Our information on Employment has tips on informing your boss and colleagues about how your condition may affect you.
  • Your friends and family may find our information on how to support someone with Crohn’s or Colitis helpful in understanding what you’re going through. They can also take part in our immersive In My Shoes app, which allows anyone to experience 24 hours of what it’s like to live with Crohn’s or Colitis.

4. Know what to expect from your care

  • Find out if your hospital has IBD nurses and how to contact them. They are there if you have questions in between your appointments. Use our map to search for your local specialist IBD service and see how to contact their advice line.
  • Make sure you tell your GP about your diagnosis, and where you’ll be receiving your IBD care.
  • Our Appointment guide can help you get the most out of your time with health professionals, and focus on what matters to you.
  • You’ll have had different medical tests to help doctors diagnose your condition. The same tests help your IBD team check (monitor) your health and find the best treatment for you. Find out more in our information on Tests and investigations.

You deserve the best quality of care. We’ve set out what good Crohn’s and Colitis care should look like in the IBD Standards, which has a section for the newly diagnosis.


5. Know your treatment options

  • There are many different medicines used to treat Crohn's and Colitis, and it may take some time to find the one that works for you. We have detailed information on common medicines used to treat Crohn’s and Colitis.
  • Making decisions on your treatments can be hard. Our information on Taking medicines looks at things to consider when choosing which medicine to take.
  • Although it may sound scary, surgery is an important treatment option for some people. See our information on Surgery for Ulcerative Colitis and Surgery for Crohn’s Disease – including videos on the common types of surgery used to treat these conditions.

It is really important to not lose hope when medicines are not working. There will be a plan and the IBD team will keep trying options.


Anonymous
Living with Colitis


6. Get connected with the Crohn’s and Colitis community

You're not alone. There are lots of ways to connect with people who understand what you’re going through.

 

  • Join a virtual social event with others affected by Crohn’s or Colitis across the UK. The events are a chance to chat, share experiences and potentially learn from others.
  • Connect with people in your area who are affected by Crohn’s and Colitis. We have 47 Local Networks across the UK bringing local people together and raising awareness. Find your Local Network.
  • Sign up to the Crohn’s & Colitis UK newsletter to hear about the amazing things we're achieving together.
  • Share your story - we’re always looking for people who are willing to share experiences which help us provide support and representation to everyone affected by Crohn's and Colitis.
  • Hear from ordinary people with Crohn's and Colitis who have overcome extraordinary challenges in Unstoppable: stories of living with Crohn's and Colitis.


7. Find out about financial support

  • If you normally pay for your prescriptions, it may work out cheaper to purchase a prescription prepayment certificate now you have Crohn’s or Colitis. This will cover all your NHS prescriptions, no matter how many items you need.
  • Some people can get money off their water bill. And other people may be eligible for grants. Find out about these and other sources of financial support in our Finances.
  • You may be eligible for welfare benefits, such as PIP (Personal Independence Payment). See our information on welfare benefits to find out about the disability benefits that are available in your nation.

8. Look to the future

There’s a lot for you to process with a new diagnosis – and we’re here to help, every step of the way. Once you feel ready, there are plenty of ways you can get involved with the huge and diverse Crohn's and Colitis community. You could give your voice to our campaigns, participate in ground-breaking research opportunitiesvolunteer your time, improve your health services and help us raise vital funds.

Together, we give each other comfort, confidence and strength. Together, we are unstoppable.

It’s something you’ll have to learn to adapt to – and you will. Don’t let your mind run riot - things will get better if you let them. Everyone goes through their own stuff in life; this is just what you’ve gone through, and if you embrace it, everything becomes a lot easier.


Moeed

Living with Crohn's


About this information

We follow strict processes to make sure our information is based on up-to-date evidence and easy to understand.

Please email us at evidence@crohnsandcolitis.org.uk if:

  • You have any comments or suggestions for improvements
  • You would like more information about the sources of evidence we use
  • You would like details of any conflicts of interest

You can also write to us at Crohn’s & Colitis UK, 1 Bishop Square, Hatfield, AL10 9NE, or contact us through our Helpline: 0300 222 5700


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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

Our helpline team can help by:

  • Providing information about Crohn’s and Colitis.

  • Listening and talking through your situation.

  • Helping you to find support from others in the Crohn’s and Colitis community.

  • Signposting you to specialist organisations.

Please be aware we’re not medically or legally trained. We cannot provide detailed financial or benefits advice or specialist emotional support.

Please contact us via telephone, email or LiveChat - 9am to 5pm, Monday to Friday (except English bank holidays).

If you need specific medical advice about your condition, your GP or IBD team will be best placed to help.

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