Coronavirus (COVID-19): FAQs for people with Crohn’s and Colitis

31 March 2020

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Public Health England (PHE), which has responsibility in England for safeguarding public health, have advised that, based on the available evidence, the current risk to the UK is ‘high'.

 

If you’ve got Crohn's Disease or Ulcerative Colitis and you’re worried about coronavirus (COVID-19), please read these FAQs which will be regularly reviewed and updated. You can also read PHE's detailed Q&A

Everyone must stay at home. See What can I do to lower my risk and protect others?

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


Frequently Asked Questions

What is coronavirus?
How does mortality risk from coronavirus compare to seasonal flu?
What can I do to lower my risk and protect others?
Self-isolation? Social distancing? Shielding? What do these words mean?
My child has Crohn's or Colitis, what should I do?
What should I do if I have symptoms?
How long should I stay at home if I have symptoms (self-isolate)?
What does staying at home (self-isolating) mean in practice?
What do I do after 7 days?
When should I contact the NHS for advice?
I’ve got coronavirus symptoms, should I stop taking my medicine for Crohn’s or Colitis?​
What should I do if I think I'm having a Crohn's or Colitis flare-up?
Am I in the government's 'high risk' or 'vulnerable group'?
Am I at extra risk because I am taking an immunosuppressive/immunomodulating medicine?
Should I stop taking my immunosuppressive/immunomodulating medicine?
Should I stop taking 5-ASAs?​
Should I still go to my appointment at the GP/IBD clinic/hospital?
Will I still be able to have my infusion?
I have questions about working, benefits or my finances
Our fundraising events
Who should I contact if I am worried?


What is coronavirus?

Novel coronavirus (also referred to as COVID-19 and SARS-CoV-2) is a virus you can catch from other people. It causes respiratory infections, which can make you cough and have difficulty breathing – but for most people the infection will be mild.

The virus started in Wuhan City, Hubei Province, China but cases have now been confirmed across the world, including in the UK.

Public Health England has assessed the current risk to the UK public as high and are working with the World Health Organisation (WHO) and other international partners constantly to review the situation.


How does mortality risk from coronavirus compare to seasonal flu?

You’ve probably seen predictions about the possible numbers of deaths in the UK from the coronavirus outbreak in the news. Every year there are deaths from seasonal flu, and it might be helpful to put the predictions about coronavirus into context.

Since 2014, the average number of deaths per year from seasonal flu in the UK is 17,000. This has ranged from 28,330 in 2014/15 to 1,692 in 2018/19. People over 65 have been most affected.


What can I do to lower my risk and protect others?

You must stay at home.

Everyone, whether they are healthy or not, must stay at home. You must not make any journeys or come into contact with anyone, other than people you live with. Public gatherings of more than two people are banned (except with people you live with).
 
You can:

  • Leave home for essential shopping (like food and drink) or for medical needs.
  • Go out once a day for exercise, such as walking, cycling or running - but you must do this alone or with people you live with.
  • Travel to work only if absolutely necessary (for example, if you are a key worker).

The police can fine you if you don't follow these rules. You must stay home and follow this advice for at least 3 weeks, starting on Tuesday 24 March.

People considered at a ‘high risk’ or ‘vulnerable’ will need to take extra precautions. Please read our latest advice about the risk categories.

Read the full government guidance on staying at home.

To help reduce the risk of catching or spreading the virus:

  • Always carry tissues with you and use them to catch your cough or sneeze. Then bin the tissue, and wash your hands, or use a sanitiser gel.
  • Wash your hands often with soap and water for at least 20 seconds. Use a sanitiser gel if soap and water are not available. This is especially important after going to the bathroom, before eating, after using public transport and after coughing, sneezing or blowing your nose.
  • Avoid touching your eyes, nose and mouth with unwashed hands.

See a simple summary of the words used to describe protecting ourselves and others from coronavirus.


My child has Crohn’s or Colitis, what should I do?

Crohn’s & Colitis UK and CICRA have come together to recommend that you do not stop your child’s medicine due to the outbreak of coronavirus.

Children on immunosuppressive medicines may be at an increased of complications if they are infected. Stopping immunosuppressive medicines is not recommended because this may cause a Crohn’s or Colitis flare, potentially requiring hospital treatment. Early evidence also suggests children are less susceptible to complications of coronavirus than adults, though for unknown reasons at present.

If you have concerns about your child’s treatment please discuss with their IBD team.


What should I do if I have symptoms?

Stay at home if you have either:

  • a high temperature - you feel hot to touch on your chest or back
  • a new continuous cough - this means you've started coughing repeatedly

This will help to protect others in your community while you are infectious. For most people, coronavirus (COVID-19) will be a mild illness.

Do not go to a GP surgery, pharmacy or hospital.

You do not need to contact NHS 111 to tell them you’re staying at home. People who are self-isolating with mild symptoms will not be tested for coronavirus. Only those who are unwell in hospital or care homes will be tested.


How long should I stay at home if I have symptoms (self-isolate)?

  • If you have symptoms, stay at home for 7 days
  • If you live with other people, they should stay at home for 14 days from the day the first person got symptoms
  • After 14 days, anyone you live with who does not have symptoms can return to their normal routine.
  • But, if anyone in your home gets symptoms, they should stay at home for 7 days from the day their symptoms start. Even if it means they're at home for longer than 14 days.
  • If you live with someone who is 70 or over, has a long-term condition, is pregnant or has a weakened immune system, try to find somewhere else for them to stay for 14 days.
  • If you have to stay at home together, try to keep away from each other as much as possible.

Read the NHS advice about staying at home.


What does staying at home (self-isolating) mean in practice?

You will have to stay at home, or self-isolate, if you or someone you live with has symptoms. You will need to get to the place you are going to stay, and once there, remain indoors and avoid contact with other people. This will prevent you from spreading the disease to your family, friends and the wider community.

In practical terms, this means that once you reach your residence you must:

  • Stay at home
  • Not go to work, school or public areas
  • Not use public transport like buses, trains, tubes or taxis
  • Avoid visitors to your home
  • Ask friends, family members or delivery services to carry out errands for you – such as getting groceries, medications or other shopping

What do I do after 7 days?

After 7 days, if you no longer have a high temperature you can return to your normal routine.

If you still have a high temperature, stay at home until your temperature returns to normal.

If you still have a cough after 7 days, but your temperature is normal, you do not need to continue staying at home. A cough can last for several weeks after the infection has gone.


When should I contact the NHS for advice?

Urgent advice: Use the NHS 111 online coronavirus service if:

  • You feel you cannot cope with your symptoms at home
  • Your condition gets worse
  • Your symptoms do not get better after 7 days

Use the 111 coronavirus service

Only call 111 if you cannot get help online.


I’ve got coronavirus symptoms, should I stop taking my medicine for Crohn’s or Colitis?

Get in touch with your IBD team if you develop any symptoms of coronavirus. If you’ve got an infection, you may have to stop taking your medicine until you are better - but this will depend on the medicine you are taking and your condition. Speak to your IBD team to get advice on whether or not you should continue taking your medicine.


Am I in the government’s ‘high risk’ or ‘vulnerable’ group?

Please read our latest advice about the risk categories.

This information is subject to change, so keep checking back for updates.


Am I at extra risk because I am taking an immunosuppressive / immunomodulating medicine?

Medicines that alter the immune system (immunosuppressive/immunomodulating medicines) for Crohn’s and Colitis include azathioprine, mercaptopurine, methotrexate, cyclosporin, infliximab, adalimumab, golimumab, ustekinumab, steroids (such as prednisolone and budesonide), vedolizumab and tofacitinib. See our information on treatments for more about these medicines and how they may affect you.

People taking immunosuppressive/immunomodulating medicines for Crohn’s or Colitis may be considered ‘high risk’ or ‘vulnerable.’ This means they may be at a higher risk of a more severe infection or complications from the virus if they are infected. Read our information here to see if your medication puts you in the high risk group. 


Should I stop taking my immunosuppressive / immunomodulating medicine?

  • Most people* should keep taking their immunosuppressive/immunomodulating medicine.

  • You can catch coronavirus from other people, so you should take extra precautions to avoid infection by social distancing and good personal hygiene, as discussed above What can I do to lower my risk and help to protect others (social distancing)?

  • If you stop taking your immunosuppressive medicine, you may have a flare which will increase your risk of complications if infected with coronavirus. These medicines also take time (in some cases up to six months) to leave the body.
    If you develop any coronavirus or flu symptoms, you should self-isolate and get in touch with your IBD team by phone before making any changes to your treatment.

    *If you’re at an increased risk of infection, for example, you’ve been in direct contact with someone with confirmed COVID-19, have travelled to a high infectivity area in the last 14 days, or have another condition that increases your risk further, you should seek advice from your IBD team by phone before making any changes to your treatment.


Should I stop taking 5-ASAs?

You should continue taking your 5-ASA medicine, unless you’ve been told to stop by your IBD team.

5-ASAs are used to treat Crohn’s and Colitis and include sulphasalazine, mesalazine, pentasa, mezavant, olsalazine, and balsalazide.

5-ASAs are not in the same group of medicines as the non-steroidal anti-inflammatory drugs (NSAIDs), like ibuprofen. There is no evidence that taking 5-ASAs increases your risk of catching or having complications from coronavirus. Mesalazine, pentasa, mezavant, olsalazine, and balsalazide work specifically in the gut, and very little of these medicines is absorbed into the rest of the body.

You should always speak to your IBD team before making any changes to your treatment.


Should I still go to my appointment at the GP/IBD clinic/hospital?

Try to avoid going to any face-to-face GP or hospital appointments if you can. If your Crohn’s or Colitis is well controlled (stable), see if you can postpone your appointment. If your Crohn’s or Colitis is active and you need medical advice, ask to change your appointment to a virtual appointment or phone call.

Many face-to-face appointments and elective (non-urgent) surgeries are being cancelled or postponed.

If you do have to visit the hospital for an appointment, or to have treatment or tests, you should follow social distancing and practice good hygiene to reduce your risk:

  • Keep your distance and stay at least 2 meters away from others.
  • Carry tissues with you and use them to catch your cough or sneeze. Then bin the tissue, and wash your hands, or use a sanitiser gel.
  • Wash your hands often with soap and water, especially after using public transport. Use a sanitiser gel if soap and water are not available.
  • Avoid touching your eyes, nose and mouth with unwashed hands.

You must not go to any appointments in person if you have any symptoms of coronavirus.


Will I still be able to have my infusion?

Infusions are taking place – but there may be some changes. Extra precautions are being taken at infusion clinics, such as fewer people attending at the same time and increased cleaning. It may be that you’ll have your infusion in a different location, such as a mobile unit, away from the hospital. Some lower priority infusions such as iron infusions may be rearranged for a later date. You should follow social distancing and practice good hygiene to reduce your risk while at the clinic.

Your clinic should let you know if there are any changes before you need to attend your appointment, but if you’re worried and you've not heard from them you should check before you travel.


Our fundraising events

We are monitoring closely the developments relating to the spread of COVID-19. The situation is developing on a daily basis, and the Government’s most recent advice is now that mass gatherings should not go ahead. There are many events scheduled in the UK over the coming months which our supporters are due to take part in, and we are working as quickly as we can to determine how to move forward. 

As a charity we are taking all necessary steps to ensure we are protecting the health and wellbeing of our supporters, members, volunteers and staff. We will continue to follow guidance provided by Public Health England, Sport England and other governmental sources relating to events, to ensure the safety of our supporters and the public.

Please bear with us as we gather more details. We will update our supporters via our website as well as email when more information is provided.

It’s been announced that several events will now be postponed in light of the Covid-19 outbreak, including:

We have been told that charities will receive further updates from the organisers over the next few days. We will be communicating with our runners and volunteers regularly to let them have updates once we know more, so please look out for emails from us.

We are disappointed for our runners who have put in so many dedicated hours and miles of training and have been enthusiastically fundraising for us over the past few months. We are so grateful to our running community for their commitment and amazing support. We very much look forward to fantastic events later this year and seeing all our supporters there.


Who should I contact if I am worried?

If you have specific treatment concerns or symptoms you are worried about, you should speak to your GP or get in touch with your IBD nurse or team.

If you’ve got questions about coronavirus, see nhs.uk/conditions/coronavirus-covid-19 or use the online NHS 111 service to check your symptoms 111.nhs.uk/covid-19

Call the NHS 111 service if you can’t access the service online, or if you feel you cannot cope with your symptoms at home or your symptoms get worse.

If you are worried about coronavirus and would like more information about things you can try to help your wellbeing during this difficult time, then MIND have lots of resources online.

Please do not go in person to a hospital or your GP unless you have been advised to do so.


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