Coronavirus (COVID-19): What is the risk to those with Crohn’s and Colitis?

27 March 2020

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New guidance for people with Crohn’s and Colitis on level of risk of complications from COVID-19, and what you should do as a result. 

 

We are working with the British Society of Gastroenterology (BSG), who have put together specific guidance for people with Crohn’s and Colitis. This guidance shows what action you need to take depending on your medication, age and other risk factors. 

This information only describes the risks for Crohn's and Colitis - if you have an additional health condition contact your healthcare professional for additional guidance. 

See our full list of Frequently Asked Questions for more information on COVID-19.

What is my risk of serious complications from COVID-19?
Why did I receive a letter from the NHS if I'm not high risk?
I'm at high risk but didn't receive a letter from the NHS
Highest Risk
Moderate Risk
Why is there a moderate risk group?
Lowest Risk


What is my risk of serious complications from COVID-19?

As well as the information below, you can also our decision tree to find out what your risk is. If you'd like to share the decision tree, please use this link: crohnsandcolitis.org.uk/decision-tree

The BSG have developed a 15-minute online survey that will help you identify your risk. The results will be available for you to download or save and this information will also be sent to the IBD team that you select in the survey. This will help your IBD team to better support you during this difficult time as they'll be able to contact you directly with the advice that's most relevant to you. Find out more about the COVID-19 UK IBD Tool.


Why did I receive a letter from the NHS if I'm not high risk?

Some people taking azathioprine may have been contacted by the NHS telling them to not leave the house for 12 weeks (known as shielding). This message was sent to patients who take azathioprine, regardless of what condition they have or what dosage they take. This precaution was taken to protect as many people as possible and was before the Specialty Doctor’s Advice Grid was available.

Specialty advice continues to be that if you have Crohn's or Colitis, are well, and taking azathioprine, you should regard yourself to be in the Moderate Risk Group. There may be other factors that mean you are in the Higher Risk Group which are explained on our website. Please continue to follow the Crohn’s & Colitis UK and BSG advice on risks. 

If you still feel you are at a higher risk, you should continue to take all possible precautions to ensure your safety and speak to your IBD team.


I'm at high risk but didn't receive a letter from the NHS

If you feel you are at a high risk, you should continue to take all possible precautions to ensure your safety and speak to your IBD team. 

You may still be able to register for support from the government if you did not receive a letter. Register your details at www.gov.uk/coronavirus-extremely-vulnerable. You can also call on 0800 028 8327.

We know that some employers will only accept NHS letters as evidence that you need to shield. We've created a letter of support you can use to help talk to your employer about why you're at higher risk.


Highest Risk

If you meet the criteria below, you have a higher risk of severe illness from COVID-19. For your own safety, you are advised to follow the government’s advice on shielding for vulnerable people. You are strongly advised to carry on taking your medication as stopping your medication will put you at higher risk.

You are at highest risk if any of the below apply to you:

  • I'm currently taking oral or intravenous steroids equivalent to 20mg or more of prednisolone per day (except budesonide or beclometasone)
  • I have started a new biologic medicine within the last 6 weeks, in combination with another immunosuppressant or steroids (except budesonide or beclometasone)
  • My Crohn's or Colitis is active despite taking a medicine listed in the 'Moderate risk' section. For example, if you are experiencing a flare or your Crohn’s or Colitis has not been well controlled over the last month.
  • I have short gut syndrome (less than two metres of small bowel left after surgical removal) which requires nutritional support 
  • I take parenteral nutrition 

You are also at highest risk if any of the below apply you AND you are also taking one of the medicines listed in the 'Moderate Risk' section AND/OR your condition has become very active with moderate to severe symptoms.  

  • I’m over 70 years old
  • I take medicines for high blood pressure
  • I take insulin or tablets for diabetes 
  • I take inhalers or tablets for asthma everyday
  • I have emphysema, COPD or another respiratory condition which limits how much I can do day-to-day
  • I’ve been diagnosed with angina (chest pain caused by your heart) or had a heart attack or a stroke.
  • I have heart failure which limits how much I can do
  • I have heart valve disease which limits how much I can do, or I’ve had heart valve surgery

The government has set up a scheme to support people who are shielding and unable to leave the house for essential needs. You can register for this support at GOV.UK.

If you are worried about the government's advice on shielding for high risk children with Crohn's or Colitis, please contact your paediatric IBD team for extra support.


Moderate risk

If you are taking any of the medicines listed below, you have a moderate risk of severe illness from COVID-19. Moderate risk means your chances of severe illness from coronavirus are higher than the general population, but not as high as people who are seriously ill. It's strongly recommended you strictly follow the government's advice on staying at home. 

You are also at moderate risk if you have stopped taking any of the below medication (apart from steroids) within the last three months. This is because they can stay in your blood for this amount of time. 

You are strongly advised to carry on taking your medication, as stopping your medication can lead to a flare-up, which will put you at higher risk.

BIOLOGICS

  • Ustekinumab (Stelara)
  • Vedolizumab (Entyvio)
  • Infliximab (Remicade, Inflectra, Remsima, Zessly)
  • Adalimumab (Humira, Amgevita, Hyrimoz, Imraldi, Hulio)
  • Golimumab (Simponi)

IMMUNOSUPPRESSANTS

  • Azathioprine (Imuran, Azapress)
  • Mercaptopurine (6-MP)
  • Tioguanine (6-thioguanine)
  • Methotrexate (Maxtrex, Methofill, Metoject, Ebetrex, Namaxir, Nordimet, Zlatal)
  • Tacrolimus
  • Ciclosporin

JANUS KINASE INHIBITORS

  • Tofacitinib (Xeljanz)

OTHER

  • Steroids equivalent to less than 20mg prednisolone per day (except budesonide or beclomethasone)
  • Any other immunosuppressant/biologic trial medication prescribed by your doctor as part of a clinical trial
  • You are taking any of the medicines in the 'Lowest Risk' section or no medicines for your Crohn’s or Colitis and your condition has become active. For example, if you are experiencing a flare or your Crohn’s or Colitis has not been well controlled over the last month.

See our information on treatments for Crohn’s and Colitis to find out more about the above medicines. 

If you are taking any of the above medicines or are in the 'other' group, your risk is moderate unless you are:

  • over 70 years old
  • or have another health condition as listed in the 'high risk' group

In which case you will be classified as highest risk.

Why is there a moderate risk group?

As everybody is now staying at home and socially distancing, the ‘moderate risk’ group identifies the people with Crohn’s or Colitis who can safely be in contact with the people they live with and, if they live alone, perform essential self-care tasks such as food shopping. This is important for mental wellbeing over the coming weeks of social isolation. The dosages of immunosuppressants given to Crohn’s and Colitis patients are typically low enough to not pose a high risk of serious complications from COVID-19. If you still feel you are at a higher risk, you should continue to take all possible precautions to ensure your safety and speak to your IBD team.


Lowest Risk

If you are taking any of the medicines listed below, and if you do not fall into the highest and moderate risk categories above your risk is the same as the general population and you should follow the government's advice on staying at home. This includes people who do not take any medicines for their Crohn's or Colitis, or stopped taking any of the medicines in the moderate risk column more than three months ago. 

  • 5-ASAs (e.g. mesalazine, Sulphasalazine, Olsalazine)
  • Rectal therapies (e.g. steroid or 5-ASA suppositories or enemas)
  • Orally administered topically acting steroids (budesonide or beclometasone) 
  • Medicine for bile acid diarrhoea (colestyramine, colesevelam, colestipol) 
  • Anti-diarrhoeals (e.g. Imodium (loperamide)) 
  • Antibiotics for bacterial overgrowth or perianal disease.

But if are taking any of these medicines and your condition has become very active with moderate to severe symptoms then you are in the Moderate Risk group.

If you are pregnant you are not at higher risk because of your Crohn's or Colitis - but the government is advising that all pregnant women should strictly follow the government’s advice on staying at home.

Taking steps to stay as well as possible is also important. Keep taking your medication as prescribed unless told otherwise. We also have a wealth of information to help support you.

For more information about things you can try to help your wellbeing during this difficult time, please see MIND for additional helpful resources. 


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