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

07 January 2021

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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 
I have questions about the COVID-19 vaccine
I have questions about employment or my finances
What should I do if I think I'm having a Crohn's or Colitis flare-up?

Catching coronavirus
I’ve got coronavirus symptoms / a positive test, what should I do?​

Research and treatments
What research is happening on the coronavirus and Crohn's and Colitis?
Should I have the flu vaccine this year?
How do you treat coronavirus?
Should I take a Vitamin D supplement?

Accessing Treatment and Care
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? 

Children and school
My child has Crohn's or Colitis, what should I do?
Should my child go back to school?
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.


I have questions about the COVID-19 vaccine

See our detailed information about the COVID-19 vaccines.


I’ve got coronavirus symptoms / a positive coronavirus test - what should I do?

Tested positive for COVID-19?
You're not alone. Read our blog from our supporters with Crohn's and Colitis who have also tested positive for coronavirus.

It's natural to feel concerned if you get COVID-19, but remember that most people who catch coronavirus, including those who take immunosuppressant medicines, make full recoveries. You might find our blog and this article from two people at high risk with Crohn's and Colitis who caught COVID-19 reassuring.

Remember to follow government guidance on self-isolating if you have coronavirus, or live with someone who does. Find out what you can do in our Terminology table:

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: 

  • you’re between 18-70 years old 
  • 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 not in a severe flare-up

People under 18 years old are at less risk of coronavirus complications, so you may not need to stop your medication. Contact your IBD team for advice.

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? (18-70 years old only)

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 

You should not stop steroids suddenly as this can be dangerous. 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 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.

On 1 April I woke up with a temperature and a headache I have never experienced before. I contacted my GP who advised me to stay home after I explained the symptoms, as it could be coronavirus. I contacted my IBD nurse and I was advised to stop my azathioprine straight away to give my body a chance to fight off the coronavirus.

Hana
Living with Colitis


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 


Should I have the flu vaccine this year?

This year, more people across the UK will be offered the flu vaccine  - including those who are on the shielding list, or live with someone who is. Find out more in our information on the flu vaccine

If you take a medicine that weakens your immune system, like a biologic or immunosuppressant, you should have the annual flu vaccine to reduce your risk of complications - so you should speak to your doctor about whether you may be eligible to have the vaccine for free. You may find our open letter to vaccine providers explaining who with Crohn's or Colitis is eligible for the free flu vaccine helpful.


How do you treat coronavirus?

You can usually manage your symptoms at home until you recover - see the NHS website for details. Antibiotics do not help as they don’t work against viruses.

Two new medicines have been approved to treat people who are seriously unwell in hospital with coronavirus. These are tocilizumab and sarilumab, which are usually used to treat Rheumatoid Arthritis. Dexamethasone and hydrocortisone (types of corticosteroids) have also been previously approved to treat severe coronavirus.

Tocilizumab and sarilumab are similar to some medicines used to treat Crohn's and Colitis which also end with the letters 'mab', like infliximab. You may be wondering what this means for you if you take one of these medicines.

Does this mean my Crohn's or Colitis medicine will protect me from coronavirus?
It is important to remember that tocilizumab and sarilumab only help treat coronavirus when it's very severe and the person has difficulty breathing. They are not effective in treating most cases of coronavirus, which are milder. At the moment, there is no strong evidence that taking any biologics, steroids, or immunosuppressants will protect you from coronavirus. People taking these medicines may be at a higher risk of becoming seriously ill with coronavirus because these medicines dampen down the effects of the immune system, which can make it harder for your body to fight off infections. It is reassuring to see that limited data shows that people with Crohn's or Colitis on immunosuppressants are recovering just as well from coronavirus as the general population - but extra precautions are still recommended until we know more. Check your risk level here.

Would I be eligible for treatment with tocilizumab and sarilumab if I already take a biologic medicine?
This is a new area of research - there aren't many cases of people being taking tocilizumab and sarilumab together with other biologic medicines. Therefore we have limited information about being on both these medicines, though limited data suggests that it is safe. If you have severe coronavirus, it is highly likely that the benefits of being given tocilizumab and sarilumab to treat you for this would outweigh the potential risks, as they can be life-saving. People admitted with COVID-19 pneumonia are required to stop taking their Crohn's or Colitis biologics while in hospital, so you would not be receiving both medicines at the same time. You will also only be given tocilizumab and sarilumab for a short period of time, so the risks are likely to be minimised.

We welcome further research into how coronavirus affects people with Crohn’s and Colitis. See our information on the latest trials.

Ongoing trials

There are hundreds of other coronavirus treatments being tested in clinical trials all over the world. There are a small number of trials investigating medicines which are also used to treat Crohn’s or Colitis, such as:

  • Adalimumab - including a trial in the UK testing adalimumab in people with coronavirus who are receiving care at home or in a care home. These are people who are at risk of becoming severely unwell from coronavirus.
  • Infliximab - including a trial in the UK testing infliximab in people who have been hospitalised with coronavirus.
  • Corticosteroids in combination with tacrolimus
  • Tofacitinib

These trials are still ongoing so we don’t yet know if these medicines will be successful in treating those who are unwell with coronavirus. The coronavirus patients in the trials will only be treated for a short time with these medicines, and the dose and timing of treatments is likely to be very different from how these medicines are used for Crohn’s or Colitis. While it is reassuring that at-risk people on certain Crohn's and Colitis medicines appear to be coping well with coronavirus, there is no evidence that taking adalimumab, infliximab, corticosteroids, tacrolimus, or tofacitinib for Crohn’s or Colitis will protect you from coronavirus. People taking these medicines may be at a higher risk of becoming seriously ill with coronavirus because these medicines dampen down the effects of the immune system. Check your risk here.

We welcome further research into how coronavirus affects people with Crohn’s and Colitis. See our information on the latest trials to take part. 

We are contacting pharmaceutical companies to ask what measures they are putting in place to make sure that everyone with Crohn's or Colitis will still be able to access their medicines, even in the event of increased demand.

Vaccines

See our vaccine information for how Crohn's or Colitis may affect potential prioritisation and eligibility for a COVID-19 vaccination.


Should I take a Vitamin D supplement?

The NHS recommend that everyone should take a Vitamin D supplement during the winter (between October and early March), to keep your bones and muscles healthy. The recommended dose is 10 micrograms (400 IU) of Vitamin D a day. It's important not to take more than this amount unless recommended by your healthcare professional. Visit the NHS website for more information about taking Vitamin D supplements safely.

It is especially important to take a Vitamin D supplement if you have Crohn's or Colitis. Ask your IBD team if they can do a blood test to check your Vitamin D levels. If your levels are low, you may want to consider taking a supplement all year around, not just in the winter. This is because:

  • You can get Vitamin D from the sun, but you may have had less exposure to the sun this year, if you were shielding or minimising time spent outside.
  • If you take an immunosuppressant such as azathioprine, you have to wear sun protection when outside. This is important to keep you safe, but can reduce how much Vitamin D you can absorb from the sun
  • You can get Vitamin D from some foods such as oily fish, red meat and liver, but this may not be possible for you if you eat a specific diet to help manage your condition.
  • Some research shows that having low levels of Vitamin D can make your Crohn's or Colitis worse.
  • If you are taking steroids such as prednisolone, taking a Vitamin D supplement will help protect your bones.
  • Being low on Vitamin D may contribute to fatigue and feeling tired.

In England and Scotland, if you are an adult in the high risk (clinically extremely vulnerable) group, the government is offering you a free supply of daily supplements of Vitamin D this year, due to the amount of time you may have been spending inside.

In England, if you would like to opt-in to receive your free supply, you will need register your details before 4 January 2021 at the following link: www.nhs.uk/get-vitamin-d. The government expect to start distributing the Vitamin D supplements to adults in England at high risk from January 2021.

You do not need to opt-in if:

  • You are already taking, or are prescribed, a Vitamin D supplement by your GP or healthcare professional
  • You are currently living in a nursing or residential care home, as the government will provide these direct to the home where you live.

In Scotland, the SG Shielding Text Messaging Service sent a reminder text to everyone on the shielding list who is registered for this service on Monday 9 November. You will have needed to opt-in to this offer by Wednesday 11 November by either replying to the reminder text with ‘VITD’, or contacting the national helpline on: 0800 111 4000. 

If you are not in the high risk group, live in Wales or Northern Ireland, or missed the deadline to register in Scotland: you can buy Vitamin D supplements at most pharmacies and supermarkets.

If you feel that you are at high risk of complications but are unable to access support, contact your healthcare professional and ask if they can add you to the Shielded Patients List. Remember your risk level can change - see what your risk is by checking our decision tree.

You should always talk to your healthcare professional before taking any medicines or supplements.


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

You should continue to attend essential medical appointments - but ask if these can happen virtually instead (by video or phone call). We have guidance on getting the most out of virtual appointments.

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.


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.​


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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