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?
How have these risk categories been created?
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 (Extremely clinically vulnerable)
Moderate Risk (Clinically vulnerable)
Why is there a moderate risk group?
What does 'strict' social distancing mean?
Lowest Risk
Will stopping my medicine reduce my risk?
What's my child's risk?
Should my child go back to school?
What activities can I do depending on my risk level?
Is it safe for me to return to work?
I'm worried about people in my household returning to work


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

Our information below has detailed information about the risk levels. You can also use our condensed decision tree to quickly 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 IBD Registry, working with the British Society of Gastroenterology (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.


How have these risk categories been created?

The risk categories were developed by the British Society of Gastroenterology (BSG) working with a large group of their members, nurses and doctors, who are specialists in Crohn's and Colitis. Many of your doctors and other members of your IBD team will be part of the society. These risk categories have been endorsed by the National Institute for Health and Care Excellence (NICE), who provide guidance, advice and information for health, public health and social care professionals.

The BSG is a UK professional membership body which consists of most of the Gastroenterology Specialists in the country, along with nurses and other health care professionals. The risk guidance was developed at the request of the government, which asked the BSG specialists to give a very detailed response to how risk should be categorised for IBD patients (as opposed to other patients) on immunosuppression medicines. Similar grids were produced by other specialists for their patient groups, who suffer from skin, joint and kidney problems and conditions affecting the nervous system.

The guidance is based on the available evidence at the time. The BSG continues to work with research groups nationally and internationally, which means there may be updates to the categories as scientific data emerges and we learn more about COVID-19.


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.

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 (Extremely clinically vulnerable)

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 extremely clinically vulnerable people. This means you should not leave your house, even for food shopping or exercise. Aim to keep 2 metres (3 steps) away from people you live with, and minimise time spent in shared areas. 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 (Clinically vulnerable)

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 alert and social distancing for clinically vulnerable people. For details on what you're advised to do or not to do, see our terminology table

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

IMMUNOSUPPRESSANTS

JANUS KINASE INHIBITORS

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 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 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.

What does 'strict' social distancing mean?

Unlike people in the high risk group, it is not necessary for people in the moderate group to shield themselves from the people they live with. However, people in the moderate group do still have a slightly increased risk of serious complications from coronavirus. Therefore, even though you’re still allowed to exercise once a day and shop for food as per the government guidelines, you should do this as infrequently as possible, and take all possible precautions. As much as you can, try to shop for groceries online and do indoor exercise such as yoga. See our terminology guide for more help on understanding how to practice strict social distancing.

If you are in the moderate risk group, you may already be used to taking extra precautions because of the medicine you take. For example, people taking azathioprine can be out in the sun, but are encouraged to be extra careful about sun protection. ‘Strict social distancing’ should be approached in a similar way – while it is safe to participate in the same activities as the general population, be mindful that your risk is slightly higher than other people, and always take extra care.


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 alert and social distancing. 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 alert and social distancing.

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. 


Will stopping my medicine reduce my risk?

Medicines that affect your immune system can stay in your body for up to three months after you stop taking them, so you will still be at risk.

If you stop taking your medicine, you may have a flare-up of your Crohn's or Colitis. A flare-up increases your risk of serious complications if you catch coronavirus, so it is important to keep taking your medicine, unless your IBD team advises you otherwise. 

If you develop any coronavirus or flu symptoms, you may have to delay taking your medicine until you feel better.  See our general guidance on medication if you have coronavirus symptoms. ​


What's my child's risk?

COVID-19 can affect children, but it doesn't seem be as serious and most children will only get a mild form of the illness.

The British Society for Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) have put together specific guidance on the risk categories for children with Crohn's or Colitis. We've used this information to create a decision tree for the risk in children. If you'd like to share the decision tree, please use this link: crohnsandcolitis.org.uk/decision-tree-children


Should my child go back to school?

It's likely that children in Scotland, Northern Ireland and Wales will not return to school until September.
 
Some children in England may be able to return to school as early as 1 June. Not all year groups will be invited to return at the same time, and schools will be putting social distancing measures in place to help protect children and staff. You should consider your family situation when deciding whether or not to send your child back to school.
 
My child is high risk (extremely clinically vulnerable) and is shielding
If your child is shielding they should not go back to school. Your child's school should support them to learn at home.
 
My child is moderate risk (clinically vulnerable)
For the vast majority of children, COVID-19 is a mild illness - therefore children in the moderate risk group (clinically vulnerable) may benefit more from returning to school than staying at home. Schools will look very different and will have social distancing measures in place to help protect all children and staff from COVID-19. It's natural to feel worried about sending your child back to school, and it may help to contact your child's IBD team to talk through your concerns. No one will force you to send your child to school - you'll need to consider your child's own situation and do what you think is best for them.
 
My child lives with someone who is high risk (extremely clinically vulnerable)
Your child should only return to school if strict social distancing measures are in place at their school and your child understands how to follow these instructions. This might not be possible for young children - so they should stay at home. Your child's school should support them to learn at home.
 
My child lives with someone who is moderate risk (clinically vulnerable)
Your child can return to school with the rest of their year group.


Is it safe for me to return to work?

We are all exposed to different levels of risk, depending on where in the country you live, the people in your household and the type of work you do, amongst others. Everyone, including those with no underlying health conditions, are exposed to a certain degree of risk during the pandemic, and the level of safety will depend on individual circumstances. Returning to work in the current climate is a very personal decision for individuals to make.

Apart from those who shielding due to being at high risk (extremely clinically vulnerable), people with Crohn's and Colitis are able to return to work in line with the government guidelines. We understand this may cause a lot of concern for people in the moderate group (clinically vulnerable), as your risk is slightly higher than the general population. However the majority of people who catch coronavirus, including those who are on immunosuppressants for Crohn's or Colitis, make full recoveries. You might find our blog from a person living with Colitis at high risk who tested positive for COVID-19 reassuring.

The government, in consultation with industry, has produced detailed guidance to help ensure workplaces are as safe as possible during the coronavirus pandemic. It may help you to read the guidance for your industry to see the comprehensive measures your employer will be taking to ensure you are as safe as possible. If you are in the moderate risk group, you should confirm with your employer that all necessary measures are being taken before you return to work.

If you're concerned that your employer is not taking all practical steps to promote social distancing, then you can raise a concern in the following ways: 

  • report this to your local authority
  • contact your employee representative
  • contact your trade union if you have one
  • use the Health and Safety Executive (HSE) contact form
  • contact HSE by phone on 0300 003 1647

The Health and Safety Executive can then take a range of action, including where appropriate requiring your employer to take additional steps.

This is naturally a very concerning time for people with Crohn's and Colitis, and we encourage you to have an open and honest conversation with your employer about your worries. We have a guide for employers to help them understand Crohn's and Colitis and how they can affect people. This may be the first time you've had to talk to your boss about your condition, which can feel daunting. Our personalised Talking Toolkit can help you find the words to explain your condition, depending on what you want your employer to know. The more information they have about your condition, the better they will be able to support you.

If you are not comfortable going into work even with strict social distancing measures in place, you may be able to arrange to take the time off as holiday or unpaid leave. Your employer does not have to agree to this. If you refuse to attend work without a valid reason, it could result in disciplinary action. If you need advice, you should contact ACAS for impartial advice about work disputes.

If you are at high risk, you should not be returning to work until the government makes changes to the shielding period, which currently runs until the end of June. We have created a letter of support you may find useful to help explain to your employer why you are unable to return to work yet. 

For further questions on employment during coronavirus, see our information on working, benefits and finances.


I'm worried about people in my household returning to work 

Everyone is exposed to different levels of risk, depending on where in the country you live, the people in your household and the type of work you do, amongst others. If you are shielding or strict social distancing, members of your household can return to work as long as they comply with government guidelines regarding transport and social distancing. 

If you are at increased risk of complications from coronavirus, it is understandable that you may be worried about the people you live with returning to work. In addition to the hand washing and social distancing measures that are applicable to everyone, there are extra precautions they may wish to take to reduce the risk of bringing coronavirus home, such as:

  • Wearing a face mask when leaving the house
  • Changing out of clothes immediately after re-entering the home. Put clothes straight into the washing machine, not the laundry basket 
  • Using wipes or a soapy cloth to wipe down items that have been outside, such as bag, keys, phone, wallet and shoes
  • Disinfect all surfaces touched after coming home, such as door handles
  • Limiting contact with others living in the house (all contact should be avoided with people shielding) 

The government has produced detailed guidance to help ensure workplaces are as safe as possible during the coronavirus pandemic. It may help you to read the industry-specific guidance to see the comprehensive measures employers will be taking to ensure everyone is as safe as possible. If you're concerned that the employer is not taking all practical steps to promote social distancing then you can report this to your local authority or the Health and Safety Executive who can take a range of action, including where appropriate requiring the employer to take additional steps.

If the person you live with does not feel comfortable returning to work even with strict social distancing measures in place, they may be able to arrange to take the time off as holiday or unpaid leave. Their employer does not have to agree to this. If they refuse to attend work without a valid reason, it could result in disciplinary action.


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