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Last full review: August 2023
Next review date: August 2026
This information is about COVID-19 for people with Crohn’s or Colitis. Our information can help you understand:
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COVID-19 is now considered to be a mild illness for most people. As such, it’s generally treated like any other common, respiratory virus. There are no longer any COVID-19 restrictions in the UK. But COVID-19 is still with us, and you may well have questions about getting it if you have Crohn’s or Colitis.
Early in the pandemic, the British Society of Gastroenterology developed a ‘risk grid’ for people with Crohn’s or Colitis. This was based on factors like current medication, disease activity, age and other health conditions. The risk grid helped identify people with Crohn’s or Colitis who were thought to be at higher risk from COVID-19.
Now we know more about COVID-19, and we have vaccines and medicines to treat it, the risk grid is no longer relevant. From the knowledge we have of COVID-19, there is reassuring evidence that most people with Crohn’s or Colitis:
Everyone’s risk is different and can be affected by many things. These can include the following.
These factors may put you at higher risk of getting COVID-19 or having a more serious illness if you get it. But the rules for who can get vaccine boosters or COVID-19 treatments because of their risk are slightly different.
Research to date has shown that most Crohn’s and Colitis medicines do not increase the risk of getting COVID-19. They also do not increase risk of getting seriously ill if you do get it. This includes 5-ASAs, azathioprine, mercaptopurine, biologics and JAK inhibitors.
Oral and injectable steroids can increase your risk of serious illness with COVID-19. You may need steroids if you have a flare-up of your Crohn’s or Colitis. This is why it’s best to keep taking your usual Crohn’s or Colitis medicines.
Taking your usual Crohn’s or Colitis medicines will help prevent flare-ups and needing steroids, which are risk factors for COVID-19.
Some of the medicines that weaken your immune system (immunosuppressants) may affect your risk in a different way. This is because they can reduce your response to the COVID-19 vaccine. Because of this, you may be classed as being at higher risk if you take an immunosuppressant.
If you’re worried about how your medicines may affect your risk, please discuss this with your IBD team.
There is guidance available for people who are classed as higher risk because they have a weakened immune system. This is different depending on whether you are living in England, Scotland, Wales and Northern Ireland.
There’s no longer any need to ‘shield’ as was advised for some very vulnerable people early in the pandemic. But if you are at higher risk for any reason, you may benefit from more protection.
Depending on the reasons why you’re at higher risk, some of the following may apply.
You can read more about this in the sections, COVID-19 treatments and COVID-19 vaccines.
It’s natural to feel concerned if you get COVID-19 symptoms or have a positive test result. But remember that for most people, including those with Crohn’s or Colitis, COVID-19 is a mild illness.
Common symptoms of COVID-19 include:
If you are at highest risk of severe disease and eligible for COVID-19 treatments, you should also have access to free lateral flow tests. See the separate section on COVID-19 treatments.
There are no longer any rules about isolating if you have COVID-19. But if you have symptoms including a high temperature and you feel unwell, it is best to avoid contact with other people. This advice is the same for any respiratory virus. If possible, stay at home until you feel better.
If you have had a positive COVID-19 test, try to avoid other people for 5 days after you took the test. The advice is 3 days for children and young people under 18.
If you are due to attend a medical appointment, contact your healthcare provider and let them know about your symptoms or positive test.
Most people with Crohn’s or Colitis will be able to follow standard advice about managing their COVID-19 symptoms at home. This includes:
If you are getting severe symptoms or are worried, contact your IBD team, GP or NHS 111. In an emergency if you are feeling seriously unwell, go to your nearest A&E department or call 999.
If you have tested positive for COVID-19, contact your IBD team to ask them whether to stop taking your Crohn’s or Colitis medicines. This will be individual to your own situation. It’s especially important to talk to your IBD team if:
If you are taking 5-ASAs, it’s safe to carry on taking them while you have COVID-19.
Your IBD team may ask you to stop or delay taking medicines that weaken your immune system until you feel better. These include the following.
Do not stop taking steroids suddenly as this can be dangerous. Instead, your IBD team may advise you to gradually reduce your dose.
This is general information and does not replace the advice of your doctor or IBD Nurse. Do not stop taking any of your Crohn’s or Colitis medicines until you’ve spoken to someone in your IBD team. If you can’t get hold of your IBD doctor or nurse, contact your GP.
For some people, it might be better to stop taking medicines that weaken their immune system while they recover from COVID-19. But stopping your Crohn’s or Colitis medicine may increase your risk of a flare-up, which is itself a risk factor for severe COVID-19. This is why it’s important that you talk to your IBD team. They can help to weigh up the risks and benefits of stopping your medicine, and assess what’s best for you.
We know it can be very concerning if you are advised to stop taking your medicine. The immunosuppressants listed above are slow-acting medicines. This means they stay in the body and continue to work for some time, even when you stop taking them. So if you’ve had to delay or miss a dose, it’s unlikely to have a significant impact on your Crohn’s or Colitis.
Children and young people under 18 years old are at less risk of serious illness with COVID-19, so may not need to stop their medication. Contact your IBD team for advice.
Some people who get COVID-19 continue to experience symptoms for several weeks or months after the infection has cleared. This has been termed ‘long COVID’. Studies to date have shown that people with Crohn’s or Colitis are not at increased risk of getting long COVID. Reassuringly, medicines for Crohn’s and Colitis also do not seem to affect your risk of getting long COVID.
That means there’s no added risk if you are continuing your usual medication during COVID-19 infection or straight afterwards.
Only people classed as being at the highest risk of getting seriously ill with COVID-19 may be eligible for treatment. This includes some people with Crohn’s or Colitis, and applies to people in all parts of the UK. You have these treatments at home or in community hospital units. You do not need to be admitted to hospital. They aren’t a cure for COVID-19. But they can help reduce the risk of complications or needing to be admitted to hospital.
You should be offered COVID-19 treatment as soon as possible if all the following apply:
There are lots of things that can increase your risk of getting COVID-19. We discuss this in the section on Risk of COVID-19 with Crohn’s and Colitis. But only those people classed as being at the highest risk will be eligible for COVID-19 treatment. This includes those with Crohn’s or Colitis aged 18 years and over who:
It’s important to note that being on this list does not mean that you will definitely receive the treatment. A clinician will assess you first and make the final decision.
In children and young people aged under 18 years, the risk of complications or hospitalisation from COVID-19 is very low. Some children may be offered treatment. But your child’s doctor will discuss this with a group of specialists first.
If you are in the highest risk group, you should have received a letter or email from the NHS with further information. This should tell you how you may be able to get treatment if you develop COVID-19.
If you are eligible to receive COVID-19 treatments, you are also eligible for free lateral flow tests. You should keep some lateral flow tests at home so you can test as soon as you have symptoms of COVID-19, even if they’re mild.
If you’re in Scotland:
You can order these free online or by calling 0800 008 6587.
If you’re in England, Northern Ireland or Wales:
You may be able to get these from your local pharmacy.
You can find out if a pharmacy near you in England is offering free tests using the Find a pharmacy service.
You can find out if a pharmacy near you in Wales is offering free tests from NHS 111 Wales.
Someone else can pick these up for you. They’ll need to know:
If your test is positive, call your GP surgery, NHS 111 or hospital specialist. They’ll decide if you need treatment. The NHS website has more information about accessing treatments for COVID-19.
If you have recently started medicines that would make you eligible for treatment, you may not be automatically contacted. If you think you are eligible but you have not had a letter or email, contact your GP or specialist to discuss whether you are in one of the highest risk groups.
There are different treatments available for people at highest risk of complications of COVID-19. These include the following:
Your vaccination status will not affect your eligibility for COVID-19 treatments. However, it is advised to get your vaccine (and boosters), especially if you are at higher risk.
There are some important points to bear in mind about having the vaccine if you have Crohn’s or Colitis:
As with many vaccines, it is possible you may get some side effects after the COVID-19 vaccine. The most common ones include:
These effects are usually mild and go away within a few days. People with Crohn’s and Colitis have similar side effects to the rest of the population, and these are usually mild. This is the case no matter what treatments you may be taking.
COVID-19 vaccines are not live vaccines (they do not contain any live virus). This means there’s no risk of it causing infection with COVID-19.
There is no evidence that having the COVID-19 vaccine will cause a flare-up in your Crohn’s or Colitis. A few people have reported having a flare-up soon after having the vaccine. But these numbers are similar to people who have not been vaccinated.
If you feel you have had a side effect from the COVID-19 vaccine, you can report it via the MHRA Yellow Card reporting site. Speak to your IBD team too if you’re concerned.
Having Crohn's or Colitis does not make the vaccine any less effective. If you’re on a 5-ASA medicine or no medicine at all, the vaccine should work as well as for someone without Crohn's or Colitis. However, being on certain immunosuppressant medicines may make the vaccine work less well.
Vaccines work by ‘tricking’ your immune system into launching an attack against a virus before you have been exposed to it. If you are then exposed to the virus later on, your body is already prepared and protects you from getting ill. If you are taking immunosuppressant medicines, your immune system might not respond as well to the vaccine as other people’s.
Evidence from major studies such as CLARITY and VIP shows that people taking anti-TNF medicines, such as infliximab, or the JAK inhibitor medicine tofacitinib have a reduced response to the COVID vaccine. This can mean:
We can’t be sure yet whether other immunosuppressants have a similar effect. But there are promising results that azathioprine, ustekinumab and vedolizumab did not reduce vaccine response in studies.
If you were taking immunosuppressant medicines when you had your first (primary) COVID-19 vaccines, you should have been offered an extra (third) dose. This extra dose should help to improve your protection.
Having a reduced response to the vaccines does not mean you should stop your treatment before getting vaccinated. Stopping treatment can lead to a flare of your Crohn's or Colitis, which puts you at greater risk from serious complications of COVID-19.
Even if the COVID-19 vaccine works slightly less well for you, it will still offer greater protection than not having the vaccine. You may also be eligible for vaccine boosters. These help to improve your immune response against current strains (‘variants’) of COVID-19.
COVID-19 vaccines are normally given seasonally. If your NHS record suggests you may be eligible for a seasonal COVID-19 vaccine, the NHS will contact you with information on when and where you can get your booster.
Depending on where you live in the UK, you can get information about current COVID-19 booster programmes, including who is eligible, from the following places.
Compared to previous years, this year’s COVID-19 booster vaccine will not be offered to:
The COVID-19 variants in circulation are under constant review. If a new, more infectious, or serious variant were to emerge, people at higher risk may be offered additional boosters.
If you are also eligible for the flu vaccine, you can usually have them at the same appointment. You will have one vaccine in each arm. It is safe and effective to have the COVID-19 and flu vaccines at the same appointment.
From 30 June 2023, the NHS stopped providing initial COVID-19 vaccines for people who are not at higher risk of severe illness. If you are at higher risk from COVID-19, you can still get vaccinated. This will usually be when booster programmes are running. Follow the links in the section How can I get a booster vaccine? to find out how to book an appointment.
If you develop a new health condition or start treatment that severely weakens your immune system, you may be able to get vaccinated sooner if your clinician or GP surgery advises it.
Experts recommend that you have any vaccines and boosters that you’re eligible for as soon as you are able.
But there may be times when it’s better to delay having a vaccine or a new medication for a short time.
Examples include:
Whether or not it is better to delay having a vaccine is something you should discuss with your IBD team. It is likely to depend on many factors that will be individual to you.
The impact on work was a major concern for people with Crohn’s and Colitis early in the pandemic, especially those who needed to shield.
Most people are now able to follow general guidance on staying safe and preventing the spread of respiratory diseases like COVID-19. There are no longer any regulations for employers to allow working from home for people at higher risk from COVID-19. But if working from home is something you would prefer to do, you should discuss it with your employer.
If you are not able to work from home, speak to your employer about what arrangements they can make to reduce your risk. It may be that you are entitled to a reasonable adjustment under the Equality Act (in England, Scotland and Wales) or the Disability Discrimination Act in Northern Ireland.
Employers are no longer required by law to carry out a risk assessment specifically for COVID-19. But they still have legal obligations under health and safety, employment, and equality law.
There is also guidance on staying safe at work in relation to COVID-19 for each nation, which employers are encouraged to follow. These are listed below. They include measures like improving ventilation, maintaining a clean workplace, and enabling flexible or hybrid working when possible.
Employers may not understand the unpredictable course of Crohn’s and Colitis. If you experience a flare-up or change medications you may be more at risk. Our guide for employers has information on how employers can support an employee with Crohn's or Colitis.
If you feel your employer is not taking reasonable steps to help protect you, you can raise a concern in the following ways:
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 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
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.
Providing details of other 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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