From 19th July 2021 in England most legal restrictions to control COVID-19 will be lifted. For more information see Coronavirus: how to stay safe and help prevent the spread from 19 July. Further announcements regarding the possible lifting of restrictions are being made across the rest of the UK, but it is likely that there will be further easing of restrictions over the next few weeks and months.
As restrictions start to ease, you may be feeling excited or worried as we get back to doing things we did before. You will need to make personal decisions about what activities you do or don’t feel comfortable doing. After over a year of strict rules, this change of approach may cause some level of unease for everyone. If you have Crohn’s or Colitis you may have even more concerns about your risk level and what you should do to keep yourself safe. The information below may help you weigh up your risks and make choices.
Your risk level and extra precautions
Finding out your risk level
- Having a diagnosis of Crohn’s or Colitis alone does not increase your risk of getting COVID-19 or developing severe illness if you do catch it. However, other factors such as the medication you take and whether you are in a flare may affect your risk. Your symptoms and medications for Crohn’s or Colitis may change a lot over time. This will mean your risk level can change a lot too. You can quickly check your risk level using our decision tree.
- You can also use the IBD Registry's COVID-19 UK IBD Tool to assess your risk and provide you with a personalised PDF explaining your risk level if you need to show employers. This information on risk is only about Crohn’s and Colitis. There are other factors which can impact your risk that you also need to consider, such as your gender, ethnicity, age and other health conditions.
- If you are still unsure whether you are at increased risk, speak to your GP or IBD team for further advice.
Staying safe when restrictions are lifted
If you are at increased risk, there are things you can do to lower your risk of getting COVID-19. These include:
- If you haven’t had your first and second dose of the vaccine, have it as soon as you can. You might want to wait until 14 days after your second dose of a COVID-19 vaccine before being in close contact with others.
- Consider whether the people you spend time with have been vaccinated.
- If meeting up with others, meet outdoors where possible. If you meet up indoors, keep doors or windows open.
- Try to keep the number of different people you see low – maybe meet fewer people but spend more time with them.
- Consider frequent rapid COVID testing and maybe asking people you are going to meet to have a rapid COVID test too. Use this service to order free packs of rapid lateral flow tests to be sent to your home.
- Avoid crowded places.
- Avoid travelling on public transport during peak times.
- Check the COVID rates in your area.
- Continue to follow hygiene advice, such as washing your hands regularly and avoid touching your face.
We have detailed information about the risk categories on our risk page.
For people living in England, there is government guidance on protecting people who are clinically extremely vulnerable from COVID-19. There is different guidance for clinically extremely vulnerable pepole living in Scotland, living in Wales and living in Northern Ireland.
It is important to take care of your mental health as things change. The NHS has information about how to cope with anxiety about lockdown lifting.
Communicating concerns about your risk level can be difficult. As restrictions ease, people may see risk very differently and you may find it hard to talk about why you're worried about certain things.
We are currently working on creating information to help you with this issue. In the meantime, you could try looking at our 'It Takes Guts' resources. These can help you with talking to other people about your condition and what it means for you.
Vaccination is the single most effective way of reducing your risk of catching COVID-19. It also reduces your risk of developing serious illness if you do catch it. As restrictions ease and cases rise, it is even more important to get fully vaccinated.
The British Society of Gastroenterology strongly recommends those with Crohn’s and Colitis have both doses of the covid vaccine.
The vaccine is now available for all adults over 18 years old, and for those 12 to 17 years old who are clinically extremely vulnerable.
See here for more information about the vaccine for children and young people.
England: You can book a slot via your GP, online, or by calling 119.
Wales: See the advice for your local health board.
Northern Ireland: Book online or call 0300 200 7813.
It is recommended that you have both doses of the vaccine even if you have already been infected by the virus before. This is because:
- We do not know how long your immune response lasts after an infection.
- We know that having two exposures by vaccination gives you better protection.
There are now three types of vaccine used in the UK. They all require two doses to get the full benefit. They are all safe for people with Crohn’s and Colitis. None of them are live vaccines. This means you can still have them even if you are immunosuppressed. You cannot catch COVID-19 from the vaccine.
You may be offered a certain type over another one depending on other risk factors. These include age, pregnancy and other medical history such as severe blood clots. To find out more about the different types of vaccines and their side effects have a look at the leaflets below:
We are aware that some people with Crohn’s or Colitis have experienced flare symptoms after their vaccine. However, the vast majority have had no serious side effects. Currently there is no evidence to suggest that the COVID-19 vaccine causes flares.
Common side effects of the vaccines, regardless of medical history, include fever, muscle pain, nausea, vomiting and diarrhoea. If you do go on to develop a flare this is likely to be a coincidence, as Crohn’s and Colitis flares can happen unexpectedly. If you are experiencing symptoms similar to a flare, they may be temporary side effects rather than the start of a Crohn's or Colitis flare-up. However, if you are concerned about your side effects after the vaccine, you can report it via the MHRA Yellow Card reporting site, and speak to your IBD Team.
You may be concerned about the risk of clots with the vaccine, as Crohn’s and Colitis can both slightly raise your risk of clots, especially if you are in a flare. You should be reassured that the clots associated with the vaccines are a very rare kind and are not linked to Crohn’s or Colitis. If you have a history of severe venous or arterial clots with low platelets then you should not have the AstraZeneca vaccine. If you have any concerns about your history or risk of clots, speak to your healthcare professional.
Gaps between doses:
The recommended gap between doses is now 8 weeks. This is based on research showing best vaccine response after this time. If you receive the second dose too soon it may not be as effective.
However, if you are about to start planned immunosuppressant therapy, you may be advised to have your second dose sooner than 8 weeks after your first one. This is because your immune response to the vaccine may not be as good once you are immunosuppressed. In that case, the minimum interval would be at least 3-4 weeks.
Having Crohn’s or Colitis does not affect how well the vaccine works. However, some of the medications commonly used to manage Crohn’s and Colitis may make the vaccine work less well.
The CLARITY study has shown that people with Crohn’s or Colitis on infliximab have reduced antibody response after one dose, and for a small group, after the second dose as well. Have a look at the latest updates from the CLARITY study for more information.
It is expected that we may see similar results in those taking high dose steroids (20mg per day or more) and immunomodulators, such as azathioprine.
This means you may not be well protected in between vaccine doses if you are taking immunosuppressants. You might want to be cautious until two weeks after your second dose and try to take measures to reduce your exposure to the virus as much as you can.
We don’t yet know whether this lower antibody response means people have a higher risk of catching COVID-19. However, even if the vaccine works less well for a small number of people, it will still offer greater protection than not having the vaccine.
Public Health England (PHE) recently released study results suggesting high vaccine effectiveness in clinically vulnerable groups however new evidence is still emerging. The advice is still to take both doses of vaccine, and to be especially careful in between the two doses. Whilst some who are immunosuppressed may have good protection from the vaccine, not all will. If you have any doubts about your risk please speak to your GP or IBD team.
A booster programme has not yet been finalised, but has been recommended by the Joint Committee on Vaccine and Immunisation (JCVI).
The interim guidance from the JCVI outlines who should be prioritised for a third booster dose of the COVID-19 vaccine. The guidance recommends offering a booster vaccine dose to people in specified priority groups from September in two stages. This would mean most adults with Crohn’s and Colitis could be offered a third vaccine dose in stage 1 or 2. See more information on this issue here.
We continue to monitor this issue. We are engaging with the British Society of Gastroenterologists (BSG), Department of Health and Social Care and JCVI to ensure that the final guidance and how it's implemented takes into account the needs of people with Crohn’s and Colitis.
Antibody testing after vaccination
Antibody testing for coronavirus is not yet widely available for free on the NHS. This is because antibody tests currently cannot give a clear indication of how well you are protected from COVID-19.
Antibodies are proteins made by your body to fight infection. An antibody test is a blood test that looks at antibodies to coronavirus. The test result may tell you your level of antibodies, or just a positive or negative result.
An antibody test can help to see if you have been exposed to the virus before – whether that is from infection or a vaccination. However, it cannot tell you your overall level of immunity.
This is for a few reasons.
- The body has many ways of fighting infection. For example, T cells have also been shown to be crucial in fighting coronavirus. However, T cells are much harder to test. An antibody test will not show your T cell response.
- There are lots of different types of antibodies that your body can produce, and an antibody test will not test them all. Even if it did, it cannot tell you how good quality these antibodies are, only the level in your blood. It is not clear yet whether high levels of antibodies equal high levels of protection from the virus.
- It’s not known how long antibodies stay in your body. People who produce antibodies may still be vulnerable to coronavirus later.
You may get a negative result even if you do have antibodies in your blood. This may be because the level of antibodies is too low to be detected by the blood test, even though it is still high enough to be helpful in fighting infection.
Another issue with antibody testing is that it may give people a false sense of security if their antibody levels are high. Or on the other hand, the test could make people think they are extremely high risk if the result is negative or very low, even if they actually have a good immune defence.
There are a few groups that can get antibody tests for free.
- Those that are taking part in certain COVID-19 studies may be able to have antibody tests.
- Certain occupations can also make you eligible for antibody testing. You can register for an antibody test here if you are eligible. Remember these results will not be able to tell you the likelihood of getting the virus in the future.
- If you test positive for coronavirus, or you're experiencing symptoms, your IBD team may advise you to pause some of your medicines until you feel better. Find out more in our information on testing positive
- Hear from people with Crohn's and Colitis who have tested positive for COVID-19 on how the virus affected them
- Find out more about the latest medicines being used to treat coronavirus, and what this may mean for you if you take similar medicines for your Crohn's or Colitis
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.
83% of you have found our information about coronavirus, including tools to identify your risk level, helpful
- View the results of our Life in Lockdown survey to see how people with Crohn's and Colitis have been affected by coronavirus, from access to healthcare to employment.
- We have blogs from our supporters on various issues such as finding reliable information, a GP's perspective on the pandemic and Ramadan celebrations in 2020.
- Employment and finances: Many people with Crohn's or Colitis are concerned about their situation at work or their finances changing because of the coronavirus pandemic. We can help you access the information and support you need. This includes information on safely returning to the workplace.
- Right now, locked public and accessible toilets are having a massive impact on people with Crohn’s or Colitis. We need your help to change this.
- We've put together some tips for getting the most out of your virtual appointment (telephone or video), as more healthcare services are being delivered virtually
Whilst the easing of lockdown restrictions and lifting of the legal requirements to wear masks and socially distance may be a relief to some, many of us have some concerns about the restrictions lifting. You may be worried about the rising number of cases or angry at what the easing of restrictions may mean for you. Whatever you are feeling, you are not alone. We have put together some information and links to help you cope and improve your wellbeing.
- As things change it is important to take care of your mental health. The NHS has information about how to cope with anxiety about lockdown lifting.
- Understanding your level of risk can help you make informed decisions for your own health. Find out more about what your risk means for you.
- If you are concerned about returning to work or finances, see our Work and finance information.
- The charity MIND has lots of helpful information about maintaining your mental wellbeing including Managing feelings about lockdown easing and Tips for taking care of your mental wellbeing.
- Our Helplines team are available to talk if you have any questions. They have put together their top tips for mental wellbeing.
- We're here for you throughout the coronavirus pandemic and beyond. See our Wellbeing Support page for how we can help.
- Take part in coronavirus research
- We’ve put together some virtual fundraising ideas to help you have fun with friends, family and colleagues and keep supporting people living with Crohn’s and Colitis at the same time.
- Since coronavirus has hit the UK, our community has needed our support and guidance more than ever. Help us continue to rise to the challenge. Donate now.
- Read about the measures we've taken to rebuild and change due to the coronavirus pandemic.
- Today, IBD teams all over the UK are pointing patients in our direction for coronavirus information. Find out how our Knowledge and Evidence team are keeping up with the crisis to bring you the most accurate and up-to-date information.
- One of our Helplines Officers, Anna, explains how the team have been helping people and answers some important coronavirus questions along the way in her blog.
We’re still experiencing an exceptionally high demand for information. We’re also working remotely which is a big change for us but we’re still supporting each other with catch ups at the start and the end of the day.
We know that the coronavirus pandemic has been difficult for many of you. If you have any questions or need to talk, you can contact our confidential Helpline via email, telephone or Live Chat - 9am to 5pm, Monday to Friday.