Top 8 things to do after a Crohn’s or Colitis diagnosis

Hearing you have Crohn’s Disease, Ulcerative 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, and is an umbrella term for Crohn's and Colitis. 

If you think you might have Crohn's or Colitis but haven't had this confirmed yet, check out our page on How to Get a Diagnosis.

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.
  • It isn’t easy coping with a long-term condition like Crohn’s or Colitis. 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.
  • We can put you in touch with another person who has a lived experience of Crohn's or Colitis if you need someone to talk to.
  • Remember that it's ok to take time for yourself. Your condition might leave you feeling more tired than usual - watch our video below for top tips on coping with fatigue

2. Stay informed

  • 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. Start with our All About Crohn's and Colitis booklet - an accessible introduction to what the conditions are.
  • You can contact our Helpline by email, telephone or Live Chat if you want to talk to someone about living with your condition.
  • You’ll be hearing lots of new words now that you have a Crohn’s or Colitis diagnosis. Our A-Z Medical Terms will help you understand all the new terminology.
  • Know your options - there are many different medicines available to treat Crohn's and Colitis, and it may take some time to find the one that works for you. Find out about your treatment options.

3. Stay updated

4. Get connected

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

  • Follow us on Facebook, Twitter and Instagram – we share personal stories of other people living with Crohn’s and Colitis. We also have a closed-group community on Facebook for everyone affected by Crohn's or Colitis to share experiences.
  • Connect with people in your area who are affected by Crohn’s and Colitis. We have 50 Local Networks across the UK bringing local people together and raising awareness.
  • Hear from ordinary people with Crohn's and Colitis who have overcome extraordinary challenges in our Unstoppable booklet:

5. Find out about financial support

  • Did you know that you may be entitled to money off your water bill? Find out more, as well as other financial tips, in our Finances information.
  • 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.
  • If you are eligible for the welfare benefit PIP (Personal Independence Payment) our guide has tips to increase your chance of a successful claim.

6. Know what to expect from your care

  • Your hospital’s IBD Nurse is there to help 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 - find out more about the support they can offer in the below video.
  • Our Appointments Guide can help you navigate your consultations with your healthcare team and show you what to expect from your appointments
  • Make sure you inform your GP about your diagnosis, and where you’ll be receiving your IBD care.
  • You deserve the best quality care. We’ve set out what good Crohn’s and Colitis care should look like in the IBD Standards, which has a section on new diagnosis.

7. 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.
  • 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.

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 - like lending your voice to our campaigns, participating in our ground-breaking research opportunities, volunteering your time, improving your health services and helping 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, 26
Living with Crohn's