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

15 July 2020

If you’ve got Crohn's Disease or Ulcerative Colitis and you’re worried about coronavirus (COVID-19), we're here to support you.

 

If you have questions about your risk level with Crohn's or Colitis and what precautions you should take as a result, see our information on risk.

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


General Questions

I have questions about my risk level 
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? 
What research is happening on the coronavirus and Crohn's and Colitis?
Who will have the COVID-19 vaccine first?
Steroid treatment for coronavirus
I have questions about employment or my finances
Who should I contact if I am worried?

I have questions about my risk level

We have detailed information about the risk categories on our risk page, including the latest shielding guidance. For guidance about returning to work, see out information on Employment and Finances.


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?

Some 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.


What research is happening on the coronavirus and Crohn's and Colitis?

Scientists and healthcare professionals across the world are united in their mission to better understand the coronavirus, to find treatments and develop a vaccine. This includes the dedicated community of Crohn’s and Colitis researchers and IBD teams. There are many current and future studies on the coronavirus and Crohn’s and Colitis, investigating areas such as:

  • Symptoms, like pain or gastrointestinal symptoms, and flares during the pandemic.
  • The impact of different Crohn’s and Colitis medicines on the severity of COVID-19 illness.
  • The development of antibodies in people with Crohn’s and Colitis – in those infected with the coronavirus or in response to the vaccine.

Find out more about the studies investigating coronavirus and Crohn’s and Colitis


Who will have the COVID-19 vaccine first?

The government has set up a specialist committee of experts to start planning for when a vaccine becomes available. They will make sure that the most vulnerable will have access to the vaccine first. Reassuringly, current data on COVID-19 shows good outcomes for people with Crohn's and Colitis, including those in the high risk (shielding) group.

Health and social care workers are considered the highest priority for vaccination. This is because they are at increased risk of being exposed to the virus, and they also have a high risk of transmitting the virus to the vulnerable patients they care for.

The next priority for vaccination is those who are at increased risk of serious illness and death from COVID-19. Based on currently available UK data, this includes:

  • people over the age of 50, with the risk increasing with age
  • people with underlying co-morbidities including chronic heart disease, chronic kidney disease, chronic pulmonary disease, malignancy, obesity and dementia

With help from medical experts, the government has also identified people who are at risk of serious illness from COVID-19 - these are people who are in the extremely clinically vulnerable/ high risk group and are shielding.

This information is not final - the work of the committee is ongoing and they will consider additional risk factors like ethnicity and gender (as well as many others) as more information becomes available. They must also consider how effective and safe the vaccine is in different age or risk groups - and how long the protection will last. This is not yet known as the vaccines are still being developed and tested. The aim is to create a vaccine that is safe for most people, including those taking immunosuppressive medicines.

Crohn's & Colitis UK are working with the British Society of Gastroenterology (BSG) to ensure that higher risk people with Crohn’s or Colitis are prioritised for the vaccine. Decisions will be based on the science and will protect those most at risk. 

This year, more people will be offered the flu vaccine in England, Wales, Scotland and Northern Ireland - including those who are shielding or live with someone who is. 


Steroid treatment for coronavirus

Dexamethasone is a steroid used to reduce inflammation in the body. A clinical trial called the RECOVERY Trial found dexamethasone is an effective treatment in preventing some deaths in people who are seriously unwell with coronavirus – these are patients who need help with their breathing and are in hospital on oxygen or on ventilators.

More recently, another steroid called hydrocortisone was found to be as effective as dexamethasone in preventing deaths in those who are seriously unwell with coronavirus.

Dexamethasone and hydrocortisone are not effective for people with mild symptoms (those who do not need help with their breathing). In the rare cases where a person becomes seriously unwell, their body produces excessive and damaging inflammation as they try to fight off the virus. This is known as a cytokine storm, and in people with coronavirus, this leads to severe inflammation in the lungs – making it difficult to breathe. Dexamethasone and hydrocortisone work by reducing this inflammation. But for people who are not experiencing a cytokine storm, reducing the activity of the immune system makes it more difficult for the body to fight off infections.

Steroids similar to dexamethasone and hydrocortisone are sometimes used to treat Crohn’s and Colitis by reducing inflammation. Taking high doses of steroids can put you at a higher risk of developing serious complications from coronavirus - see our information on risk to find out more. This is because these medicines reduce the activity of your immune system, making it more difficult for your body to fight off the virus. There is no evidence that taking steroids for Crohn’s or Colitis will protect you from coronavirus, as dexamethasone and hydrocortisone only work for people who are seriously unwell in hospital. The timing and dosage of steroids to treat coronavirus is very different to how steroids are given to treat Crohn's and Colitis. Dexamethasone and hydrocortisone need to be given for a short time period and at a precise point in the coronavirus infection to work.

While dexamethasone and hydrocortisone have been found to be effective, these steroids do not work for everyone who is seriously unwell with coronavirus. It is estimated that for every 100 people treated, 8 lives could be saved.


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/coronavirus 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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