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

11 May 2020

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If you’ve got Crohn's Disease or Ulcerative Colitis and you’re worried about coronavirus (COVID-19), please read these FAQs which are regularly reviewed and updated.

 

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.

For more information about how to protect yourself and others, as well as what to do if you become unwell, visit nhs.uk/coronavirus.

For the latest government advice and support, visit gov.uk/coronavirus

** If you are unsure of your risk level, check the COVID-19 UK IBD Tool **


Frequently Asked Questions

I have questions about my risk level
Self-isolation? Social distancing? Shielding? What do these words mean?
My child has Crohn's or Colitis, what should I do?
Should my child go back to school?
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?
Should I still go to my appointment at the GP / IBD clinic / hospital?
Will I still be able to have surgery?
Will I still be able to have my infusion?
Will I be able to have the COVID-19 vaccine when it’s available?
I have questions about working, benefits or my finances
Our fundraising events
Who should I contact if I am worried?

Hear from IBD Nurse Consultant Isobel Mason and Clinical Director of Gastroenterology Dr Charlie Murray



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

Our advice about coronavirus applies to children as well as adults. Having Crohn’s or Colitis doesn’t always increase your child’s risk of complications from COVID-19, as it will depend on what medicine they are taking and their current health. See our information on risk to see what this means for your child.

It’s important that your child continues to take their medication, otherwise they are at increased risk of having a flare-up which could require hospital treatment. If you have concerns about your child’s treatment please discuss with their IBD team. Early evidence suggests children are less likely to develop serious complications from coronavirus than adults are.

Children should be gradually weaned off steroids as soon as it is safe to do so. In children with Crohn’s, exclusive enteral nutrition is a safe alternative option in a flare-up. Speak to your child's IBD team about the best treatment plan for your child. 

The charity CICRA have information about what coronavirus means for children with Crohn’s or Colitis, as well as resources to help your child cope and keep occupied.


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

If you’ve got symptoms of coronavirus, you may have to stop taking your medicine until you are better – but this will depend on the medicine you are taking.  

Always speak to your IBD team if considering any changes to your medication. As a general rule, the advice below applies if: 

  • your coronavirus infection is mild (you can manage the symptoms at home) 
  • you don’t have any other underlying health conditions that put you at a high risk of a severe infection or complications of coronavirus  
  • you’re under 70 years old 
  • you're not in a severe flare-up

If your coronavirus symptoms are more severe or you’re at a high risk of complications due to your age or other health conditions, please seek advice from your IBD team. 

If you are admitted to hospital you will be assessed and likely to stop any medication which suppresses the immune system, as shown in the table. If you are on steroid tablets, these may be switched to intravenous steroids, and the dose changed depending on your condition.

Medicine

I’ve got coronavirus symptoms – should I stop taking my medicine? 

Immunosuppressants:

Stop taking these until you feel better and contact your IBD Team for advice. 
 

Biologic medicines: 

You should not take biologics while you have an infection. Wait until you feel better before taking your injection/infusion and contact your IBD Team for advice
Steroids 

Wherever possible, you should not stop steroids suddenly. Contact your IBD team to discuss whether you should adjust your dose

5-ASAs  Keep taking – 5-ASAs are safe to take when you are unwell

This information has been checked by medical professionals, but is general and does not replace the advice of your doctor or IBD Nurse. Always speak to your IBD team if considering any changes to your medication.

We know it can be very concerning not being able to take your medicine. The immunosuppressants listed above are slow-acting medicines, which means they stay in the body and continue to work for some time, even when you stop taking them. So if you have to miss a few doses, you should still be able to keep well. Read our advice about staying well with Crohn’s or Colitis.


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.
  • Wear a cloth face covering - such as a scarf or bandana. Wash your hands before putting it on and taking it off.

You must not go to your appointments if you have any symptoms of coronavirus. Speak to your IBD team before your appointment to tell them you are self-isolating and they will tell you what you should do.


Will I still be able to have surgery?

Many scheduled operations and procedures are being delayed because of the coronavirus pandemic. It’s understandable to be concerned if this happens, but your healthcare team will have carefully weighed up all the risks before deciding to delay your surgery. If you have a higher risk of severe complications from coronavirus, it is better where possible to delay your surgery until the virus is less of a risk in hospitals. Your IBD team will be keeping a close eye on the situation, and will rebook your surgery as soon as it is safe to do so. Your hospital’s IBD Nurse will be able to offer you advice on keeping well while you wait for surgery.

The NHS will always be able to provide urgent or emergency operations for people who need it most. People with surgical complications of perianal Crohn’s Disease should still be able to access emergency drainage of abscesses.

If your symptoms start to get worse, it’s important to let your IBD team know. It’s understandable to be concerned about going into hospital during the coronavirus pandemic, but if you delay seeking medical help your condition could get worse, and require more treatment and a longer stay in hospital. It would be a good idea to keep an eye on your symptoms and keep a record if they change, including a description, date and time.

If your concerns about cancelled surgery have not been resolved by your hospital team, you may find it helpful to speak to your local Patient Advice and Liaison Service (PALS).

Find out more about surgery for Crohn's Disease and surgery for Ulcerative Colitis


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.


Will I be able to have the COVID-19 vaccine when it’s available?

Across the world, teams of scientists are working to develop a vaccine – but this does take time. At best, it could take 12- 18 months to develop a COVID-19 vaccine.

As with the flu vaccine, it’s likely that people with Crohn’s or Colitis would be advised to have the COVID-19 vaccine.

On 27 May 2020 there were 10 vaccines in human trials and 115 other vaccines being developed in the laboratory. There are five different types of vaccines being tested in the 10 human trials. All five types of vaccines would be considered safe for people taking immunosuppressive medicines.

On 24 April 2020, the World Health Organisation (WHO) announced a global collaboration to ensure everyone across the world will have equal access to affordable COVID-19 tests, treatments and vaccines. The UK is involved in this collaboration.


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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