Coronavirus (COVID-19): What your risk means for you

04 January 2021

 

Latest 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. 

 

Not everyone with Crohn's or Colitis will have an increased risk of complications from coronavirus, but some may need to take extra precautions. 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 Coronavirus hub page for more information on COVID-19, including questions about vaccines.

About the risk categories
What is my risk of serious complications from COVID-19?
What's the risk for under 18s?
Highest Risk (Extremely clinically vulnerable)
Moderate Risk (Clinically vulnerable)
What does 'strict' social distancing mean?
Lowest Risk

Managing daily life
Do I need to shield?
Will I recover from coronavirus if I'm at increased risk?
What activities can I do depending on my risk level?

Is it safe to go to work?
Will stopping my medicine reduce my risk?
Should my child go to school?
Is it safe to go to university?
I have other risk factors which aren’t covered here

Understanding your risk
Why is this guidance different from government letters?
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


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. Find out more about the COVID-19 UK IBD Tool.

My experience with coronavirus felt no different to when I have a bad flare up. I was scared going into the coronavirus ward but a lot of the fear I think was generated from watching too much news of coronavirus.  The reality of me having had severe flare ups is that it prepared me well to deal with what coronavirus threw at me.

Emma
Living with Colitis and a stoma




What's the risk for under 18s?

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) has 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.


Why are the risk groups different for children?

Reassuringly,  very few children in the UK have been admitted to hospital unwell with COVID-19 - and many of those have been only mildly affected.

The risks of serious harm are very low for children and cases of children with Crohn's or Colitis being admitted to hospital with COVID-19 are extremely rare. Based on this evidence, children with Crohn's or Colitis who were previously in the moderate risk group are no longer considered to have an increased risk of serious illness from COVID-19. Therefore, there is no need for a moderate group.

Children who were previously asked to shield may still be considered high risk - but you should speak to their healthcare team. Your child's healthcare team will assess their risk based on your child's individual condition and may decide that your child no longer needs to shield.

Crohn's and Colitis are fluctuating conditions so it's possible that your child's risk may change over time. If you're worried about a change to your child's risk you should speak their IBD team.


Highest Risk (Extremely clinically vulnerable)

If you meet the criteria below, you have a higher risk of severe illness from COVID-19. 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

You should try to stay at home as much as possible - even when you are not being advised to shield. You can get extra support with essential shopping and supplies through your local authority.


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

OTHER

  • Tofacitinib (Xeljanz)
    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.

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.

What does 'strict' social distancing mean?

People in the moderate group do still have a slightly increased risk of serious complications from coronavirus. Therefore, even though you’re still able to follow the current government guidelines on social distancing, you should take all possible precautions when out, and stay home when possible. As much as you can, try to shop for groceries online and work from home. See our terminology guide below for more help understanding how to practice strict social distancing.

Click the terminology table to enlarge

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. See our blog for tips about going outside during the pandemic.


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.

 


Do I need to shield?

People at high risk in in England, Scotland or Wales should follow shielding guidance. In Northern Ireland, people at high risk are not being asked to shield, unless you receive a letter telling you to do so. There may be advisory extra recommendations for you depending on your local guidance.

Remember that your risk level can change - the best way to find out if you are still in the high risk/clinically extremely vulnerable group is to

If you feel that you are at high risk of complications but are unable to access support, contact your healthcare professional and ask if they can add you to the Shielded Patients List. 

England
England is in a national lockdown and people in the high risk group are advised to shield. The government will be writing to those at high risk with advice on what this means for them. See the latest government guidance on shielding.

Scotland
Mainland Scotland is in a lockdown and people in the high risk group are advised to shield.The Chief Medical Officer will be writing to everyone who falls into the high risk category. See the Scottish Government guidance on shielding.

Wales
If you are in the high risk group, you are advised to shield. See the latest Welsh Government guidance on shielding. The Welsh Goverment are keeping a record of the people who were shielding before, so that these people can be contacted and updated on the new measures. 

Northern Ireland
Shielding is not being resumed, but people at high risk are asked to be particularly careful in following the advice on limiting household contacts, social distancing, hand washing and wearing a face covering. From 26 December people at high risk who are working and are unable to do so from home are advised not to attend the workplace. Find out more from the Northern Ireland Government website.

In all nations support will remain available from NHS volunteers and local councils after shielding has ended. You will still get priority for supermarket delivery slots, and you'll be able to access help with shopping, medication, phone calls and transport to medical appointments.

We know that many people at higher risk are concerned about the rising cases of cornoavirus. As part of a coalition of 16 leading health charities, we have written to Health Secretary Matt Hancock and Chancellor Rishi Sunak calling for clear guidance, financial support and safe access to food, medicines and healthcare services to enable vulnerable people to stay safe as coronavirus cases continue to rise. Find out more about how we're speaking up for you here.

I've been asked to shield - what can I do?

If you are advised to shield by your healthcare professional, or via a government letter, you should stay home as much as possible and try to stick to the following guidlines:

  • Work from home. If this isn't possible, you may be eligible for Statutory Sick Pay (SSP) or Employment Support Allowance (ESA)
  • Try to avoid close contact with people you live with, or people in your support bubble
  • You can go outside, but try to minimise contact with people you don't live with, and avoid busy areas
  • Use online shopping if you can, or ask others to collect and deliver shopping for you (friends and family, or NHS Volunteer Responders). If you cannot access food, your local authority can offer support.
  • If friends and family are not able to collect your medicines for you, then you will be eligible for free medicines delivery. Contact your pharmacy to arrange this.
  • You should still attend essential medical appointments.

Check the letter you received, or with your IBD team, for further information. 

Am I still in the high risk group even if shielding is paused in my local area?

Yes - if you were to catch coronavirus, your risk of complications would still be high if you meet the criteria for being at high risk.

Going to work

Across the UK, people at high risk are advised not to attend the workplace and should instead work from home, if this is possible. If you are unable to work from home, your employer may be able to put you on furlough, or you may be eligible for benefits. See our information on employment, finances and benefits.

Not everyone with Crohn's or Colitis is in the high risk group. Your risk level can change depending on if you're in a flare and how long you've been on your medication. Remember to check our decision tree or the COVID-19 UK IBD Tool to see what the risk is to you. 

If you are at moderate or low risk, you are able to leave home for work - but only if you can't work from home. You should take all possible precautions when doing so. You should only return to your workplace if social distancing measures can be followed.

If you are concerned about going to work, we have created a letter of support to help you explain your risks to your employer. The government, in consultation with industry, has produced detailed guidance to help ensure workplaces are as safe as possible during the coronavirus pandemic, and we have information for employers about precautions to take. You should confirm with your employer that all necessary measures are being taken to keep you as safe as possible. If you're concerned that your employer is not taking all practical steps to promote social distancing, see our information on returning to work for guidance on how you can report the issue. 

We know being able to go to work will come as a relief to many people with Crohn's and Colitis, but may also be concerning for others. If you decide to go out, follow strict social distancing and try to avoid being outside at busy times. See our blog for more tips about going outside during the pandemic. The mental health charity Mind have lots of information about protecting your wellbeing during the coronavirus pandemic, including tips on staying active at home.


Will I recover from coronavirus if I'm at increased risk?

Most people who catch coronavirus, including those who take immunosuppressant medicines, make full recoveries. You might find our blog  from people with Crohn's and Colitis who caught COVID-19 reassuring.

Being in the high risk group does not mean you won't recover from coronavirus - it means your chances of getting serious complications are higher than the average person. It isn't possible to predict exactly who will have more serious symptoms as everyone is different. Even people with no health issues sometimes develop serious complications, while some people with increased risk have only mild symptoms.

The best thing you can do to decrease your risk of serious complications is to stay well, and keep taking your medicines to control your Crohn's or Colitis. If you have a fever it's very important to keep hydrated, as Crohn's and Colitis can increase your risk of dehydration.

If you do develop symptoms of coronavirus, you may have to make some changes to your Crohn's or Colitis medicine. Always discuss any changes with your IBD team.

There are a number of research studies investigating coronavirus and Crohn's and Colitis - you can find out about some of them here.

I am on azathioprine, and on the day that I tested positive for coronavirus I had just finished a course of prednisolone, but my experience was fairly mild. I had many of the symptoms, including a fever, cough and loss of taste and smell but it wasn’t anywhere near as bad as I imagined it would be. I had some lingering fatigue for probably 2 or 3 weeks after I recovered, but then got back to full health.

Marcus
Living with Colitis


Is it safe to go to work?

Everyone, including those with no underlying health conditions, is exposed to a certain degree of risk from coronavirus. Absolute safety can never be guaranteed, and going to work in the current climate is a very personal decision for individuals to make.

People at high risk in all UK nations are advised to work from home (where possible) and should not attend their workplace.

We have detailed information about going to work during the coronavirus pandemic on our working, benefits and finances page, which includes how to raise a concern if you're worried your employer isn't taking all possible precautions to ensure safety. It also includes guidance on people in your household going to work if you are high risk. 


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. ​


Should my child go to school?

Schools and colleges in all UK nations are closed and/or have moved to online learning - although vulnerable children and children of key workers can still attend in person. Check the specific guidance for your nation below.

Coronavirus can affect children, but it doesn't seem be as serious and most children will only get a mild form of the illness. Many children who were previously considered high risk (extremely clinically vulnerable / shielding) or moderate risk (clinically vulnerable) may no longer be considered to have a greater risk.

Check your child's risk.

If your child is high risk they should not attend school or college while your nation is in a national lockdown. If your child is moderate or low risk they can attend school if you are a key worker or they are considered vulnerable. If your child's healthcare professional tells you they should not attend school, you should follow their advice.

If your child lives with someone who is high or moderate risk they can attend school if you are a key worker or they are considered vulnerable.

Check the specific guidance on school openings for your nation:


Is it safe to go to university?

Many universities will remain closed while some UK nations are in national lockdown. However, some univiersities will be open for specific courses, and you should check with univerisity whether you should return and attend classes in-person. People at high risk should not attend university - even if your specific course is holding lessons in-person. You should learn from home instead. Check your risk. 

If you can attend university, it's understandable that you may feel worried, but your university will be doing everything they can to keep you safe. They have to follow the latest government guidance for their local area, carry out risk assessments, and implement protective measures such as social distancing and increased cleaning. If you are worried about attending in-person classes, it is best to have an open and honest conversation with your tutor about your concerns. Our Talking Toolkit can also help you find the words to explain your condition to your tutor.

Each university will be making changes specific to their situation - so you should check their website to see how things will work for you when you return.

If your Crohn’s or Colitis has an impact on your ability to study, you may find it helpful to look into claiming Disabled Students Allowance. You may be eligible for assistance with purchasing items such as a laptop or printer to enable you to study from home if your condition makes travelling to classes difficult.

For extra support and information on managing uncertainty during this time, see Student Space.

The government also has guidance for university students if someone you live with develops coronavirus symptoms.


I have other risk factors which aren’t covered here

There are many factors which can affect a person’s risk of complications from coronavirus. We are only able to give information about risks specific to Crohn’s and Colitis, and are not able to say whether your risk category would change based on the below factors. It’s best to talk to your GP or healthcare team if you’re worried, and take all possible precautions if you feel you are at high risk. Our top tips for going outside may help you feel more confident about leaving home if you are at increased risk.

Other factors which have been found to increase a person’s risk are:

Other health conditions
People with certain serious health conditions have been found to be at a higher risk of coronavirus complications. See the full NHS list of conditions which increase a person’s risk.

Age
Risk of coronavirus complications seems to increase with age, and is highest for people over 70 years old. The risks are very low for children under 18.

Ethnicity
Risk of coronavirus complications is higher for people from black, Asian and minority ethnic groups than for those from white ethnic groups.

Gender
Risk of coronavirus complications is higher for men than women.


Why is this guidance different from the government letters?

These risk categories are specific to Crohn's and Colitis. The shielding letters sent out by the government do not take into account individual conditions and the specific dosages of medicines. 

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?

Many people are confused about which risk group they fall into, due to the varied information available. A large number of people were contacted by the NHS telling them to practice shielding, but not everyone needed to. The NHS have released a statement explaining that "our aim has been to contact the most people as soon as possible, with the risk that we would also include a small number of individuals who do not need to use social shielding." Therefore you may have received a letter even if you don't need to shield. 

You may have received a letter because they were sent to a large number of patients who take immunosuppressants, regardless of what condition they have or what dosage they take. This precaution was taken to protect as many people as possible, but the dosages of immunosuppressants given to Crohn's and Colitis patients do not automatically put people at high risk. 

The list of who needs to shield hasn't been updated for everyone. Specialty advice continues to be that if you have Crohn's or Colitis, are well, and taking an immunosuppressant such as 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 - check your risk level on our decision tree or the COVID-19 UK IBD Tool

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.

As we went into lockdown, I received a text from the Government telling me I was high risk. I knew that this was related to my immunosuppressive medication, but it was still difficult to understand what this pandemic meant specifically for me. I later found out this message was sent to patients who take azathioprine, regardless of what condition they have or what dosage they take. 

The Government’s information can often be generic. The saving grace during this time has been charities, and specifically for me, Crohn’s & Colitis UK. Their information has been invaluable in working out what this pandemic means for me and my chronic disease.

Henry, age 27
DLiving with Colitis


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 or GP. Your GP may be able to add you to the Shielded Patients List so that you will be contacted with any shielding updates. If you think you're on the Shielded Patients List, you can request a letter.

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