IBD During COVID-19 – Information from Hull IBD

Patient Experience

  • Reference Number: HEY1099/2020
  • Departments: Coronavirus - COVID-19, Gastroenterology
  • Last Updated: 31 March 2020

What are the implications of COVID-19 for IBD patients?

IBD is a condition in which the immune system reacts inappropriately to the gut bacteria. It is often treated with immune suppression. IBD patients on immunosuppressive medications are in general, more susceptible to infection. Specifically, being on steroids or immune modulators like azathioprine or 6- mercaptopurine or methotrexate can increase an IBD patient’s risk for viral infections
although often these are reactivation of previous infections. However, it is of paramount importance to control the intestinal inflammation in IBD to prevent adverse outcomes. To date, we do not have specific IBD research on COVID-19.

What are the current recommendations for IBD patients, and their medication related to COVID-19?

Many patients have already asked us if they should stop their medications. It is important to balance any theoretical risk of a more severe COVID-19 disease course with the known risk of a disease flare.

5ASA medications (Asacol, Octasa, Mezavant, Salofalk, Pentasa): medicines such as mesalamine are all considered safe and should be continued.

Steroids (prednisolone, budesonide): steroids play an important role in controlling a disease flare and should not be stopped suddenly without advice. However, there is evidence that steroid therapy may increase the severity of infections including those from agents similar to COVID-19. Therefore, it is considered sensible to reduce long term steroid use (particularly prednisolone) as much as possible. This is particularly so for prednisolone and less so for budesonide and hence we would if possible avoid
the use of steroids for flares during this period.

Immune suppressants (mercaptopurine, azathioprine, methotrexate and tofacitinib): These drugs inhibit the body’s immune response and are associated with an increased risk of viral reactivation. However, when stopped the effects of these medications will take some time to wear off. We do not know the impact of these medication on the severity of COVID-19 infection and we would recommend that
they are continued unless advised by your IBD specialist team (we are making this decision based on combination of factors) or if you have an active infection with a fever (see below).

Biologic agents (infliximab, adalimumab, vedolizumab and ustekinumab: Biologics are highly targeted therapies and are generally thought to be safe although their impact on COVID-19 infection is not known. They also stay in the body for a considerable time after each dose. We would recommend that these are continued unless you have an active infection with a fever (see below).

Therefore, at present we do not recommend stopping your medication
routinely without advise from your specialist team or temporarily if you have
infection as was the case before. If you wish to talk and know more then
contact the IBD helpline as before.

What are the new recommendations on SHIELDING and how does this apply to me?

On March 22nd the Government announced a new requirement to shield the most vulnerable in our community to reduce their risk of catching COVID-19. Six groups were highlighted and one of these included some patients with Inflammatory Bowel Disease. These patients should shield themselves at home for the next 12 weeks with no face to face contact with others. Patients who are identified as being in this
group who do not have a family or social network may get government help to access to support to help them such as food and medication delivery

gov.uk – Get coronavirus support as a clinically extremely vulnerable person

A group of UK IBD specialists were tasked by the British Society of Gastroenterology to determine which of our patients were most vulnerable and should be shielded from contact with others, based upon our knowledge of the disease and its medication as well as all available data of the disease course of COVID-19.

Highest Risk patients: should be SHIELDED at home

  1. IBD patients who are ≥70 years old AND are on any immune supressing therapy*
  2. Patients who have established comorbidity (Diabetes, heart disease, Hypertension and lung disease AND are on any immune supressing therapy for IBD*
  3. Any patient with IBD irrespective of age or comorbidity who:
    1. Are currently on prednisolone doses of 20mg daily or more (once dose drops below 20mg then the patient moves to moderate risk)
    2. Have recently ( in the last 6 weeks) been started on biologic therapy in combination with an immunomodulator (azathioprine, mercaptopurine, tacrolimus or methotrexate);
    3. Have moderate to severely active disease despite biologics / immunosuppressants
    4. Have nutritional deficiency / short bowel such that they require nutrition support

*Immune supressing medication includes: Anti-TNF alpha monotherapy (infliximab, adalimumab, golimumab), Ustekinumab, Vedolizumab, Methotrexate, Thiopurines (azathioprine, mercaptopurine) Calcineurin inhibitors (tacrolimus or ciclosporin), Janus kinase (JAK) inhibition (tofacitinib), Immunosuppressive/biologic trial medication.

It is hugely important to note that patients who are being shielded do still have access to healthcare from our team. Consultations will be by telephone if possible, the IBD helpline will be answered (please use e-mail as much as possible) and infusions will still take place. The infusion service has moved to east riding community hospital outpatient area away from the acute hospital setting of Hull Royal Infirmary. We will pre-screen patients before with a phone call before the infusions. Unless we ask you do not need to get the blood tests done as you have done before at the GP surgery.

We will also have urgent clinic slots to assess patients who are unwell face to face in exceptional circumstances.

How can I help to self Identify?

You may have already been contacted by NHS or your GP in relation to this. The NHS has also asked hospitals to identify any patients belonging to the higher risk category.

We now need to identify all patients who fall into the high risk group. We are working to identify as many patients as we can and we will contact you individually where possible.

You can help us in the following ways:

  1. Please use the risk questionnaire developed by the British Society of gastroenterology and Crohn`s and colitis UK using this link.
    Alternatively urgently review the risk grid on the Chrones and Colitis UK website
  2. If you believe you fall into the highest risk group please email your name, date of birth and (ideally) NHS number to hyp-tr.ibd.enquiries@nhs.net . Please include “IBD patient shielding” as the subject line. We will contact you to confirm details in particular the co-existent conditions.
  3. If you are unsure of your risk assessment, please email the same address with “IBD shielding UNSURE” as the title. Our team will do our very best to respond as fast as possible- please be patients
  4. Another method of contact is by telephone 01482608982 . Please bear with us as we are experiences high volumes of calls currently
  5. Please share this message with anyone you know and by any means within the IBD community. Copies of this message will go to the local Crohn’s and Colitis UK team to share within their network- we particularly need to reach the elderly and vulnerable who may be less active on social media etc. (we are of course working to identify these patients centrally).
  6. If you do not fall into the highest risk group, then no further action is required.

Please note that infusion and drug deliveries will continue for all patients, regardless of shielding. We are prioritising maintaining a safe infusion service by moving the service to East Riding Community Hospitals, Beverley away from the acute setting in Hull Royal Infirmary, as we recognise how vital these medications are for keeping our patients well.

We will do our very best to keep you updated during these difficult times of understandable anxiety for our patients. Please be assured that we are doing all we can to keep you safe and well.

What should I do if I am unwell or tested if a household member is tested positive for COVID-19 or having symptoms of COVID-19?

  • Stop your immunosuppressant or biologic medication ( as per the list above)
  • Do not stop the mesalazine preparations
  • When possible reduce steroids if you are on them but discuss with us
  • Contact the helpline via e-mail and inform us
  • We will advise you when this can be restarted but in general can restart treatment once recovered (7 days symptom free for yourselves) or 14 days after recovery of the household member whichever is the later time point.

Top 10 tips for everyone with IBD:

  1. All patients with IBD should follow current advice on social distancing
    and those in high risk category should do shielding
  2. Quit smoking as this increases the risk and severity of COVID-19 infection
  3. Ensure you have a good supply of medication should you need to self-isolate
  4. Wash your hands frequently (20 seconds with soap and warm water)
  5. Avoid touching your nose, eyes and mouth.
  6. The Government advises against all non-essential travel overseas
  7. If you develop a cough, fever or flu like symptoms you should
    contact 111 for advice.
  8. Although it will not protect you from COVID-19 all patients on immune suppressant medication should have an influenza vaccination as seasonal flu is also circulating at the current time.
  9. Should you develop a fever of 37.8oC or above, we would recommend that you temporarily stop immune supressing and biologic medication and contact the IBD helpline for advice
    10.Take care of yourself but also be kind and considerate to others in these difficult times

Should you be diagnosed as having COVID-19, please get in touch via the IBD
helpline as soon as possible so we can discuss stopping medication and
monitoring your IBD

Helpline e-mail: hyp-tr.ibd.enquiries@nhs.net

Telephone help line: 01482608982

It is important to note that this advice may change in line with
recommendations from the UK Government and National / International IBD
societies – we will attempt to update as required

Keep safe
Hull IBD Team


This leaflet has been produced by the Hull University Teaching Hospitals NHS Trust and is available as a download:

Download the “IBD During COVID-19 – Information from Hull IBD” leaflet

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