Testing positive: information and stories

4 images of people supporting Crohn's and Colitis

If you test positive for coronavirus, or you're experiencing symptoms, your IBD team may advise you to pause some of your medicines until you feel better. Read below to hear from people with Crohn's and Colitis who have tested positive for COVID-19 on how the virus affected them​.

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

4 images of people supporting Crohn's and Colitis
Last reviewed July 2022

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

 

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 may be eligible to access early treatment. Read our information on treatments for COVID-19.

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.  

Some people have reported symptoms of coronavirus that are similar to Crohn’s and Colitis, like diarrhoea. It can sometimes be hard to tell what is causing your symptoms, so check with your IBD Team. Always let your healthcare professional know if you start taking any over-the-counter treatments or supplements, as these may affect your Crohn’s or Colitis treatment.

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.


Testing positive for COVID-19: your stories.

My experience with coronavirus felt no different to when I have a bad flare up.


Emma
Living with Colitis

It started with abdominal pain, nausea, aching followed by a fever and high output from my stoma. I was also very fatigued throughout this and it continued for seven days. On day 6, I was admitted for to hospital and placed on IV antibiotics and fluids. In accident and emergency I had a routine coronavirus test and a positive result came back 24 hours later. This led to me being transferred to a COVID ward. I was in hospital for 5 days and had another 2 weeks of symptoms when I slept a lot until I fully recovered.  

My experience of coronavirus was hard, and I was scared going into the coronavirus ward but a lot of the fear I think was generated from watching too much news of coronavirus.  The reality of me having had severe flare ups is that it prepared me well to deal with what coronavirus threw at me.  The IBD team and ward staff definitely gave me the best care and follow up they could.


On 23 March 2020, when coronavirus was rife, I was admitted to hospital due to Colitis symptoms which were not improving. 

 


Jess
Living with Colitis

After developing symptoms, I was moved onto a ward with five other patients with coronavirus which made me super anxious about having to share a bathroom and worried about my treatment making me higher risk.

I am mentally, physically and emotionally drained, but my coronavirus symptoms are practically gone and my flare-up appears to be under control! The last nineteen days have been an experience, to say the least, but I am definitely stronger for it. Every single member of staff I encountered deserves a medal and I cannot praise them enough for the work they continue to do.

I kept a journal of my time as an inpatient during the pandemic, and you can read that here.


I had a test for coronavirus on 10 October, which came back positive two days later.


Jo
Living with Colitis

My Colitis is well controlled with azathioprine and mesalazine. When I tested positive, my symptoms were mild with some fatigue. I did have a chesty loose cough which is still lingering. After self-isolating I have returned to work as a teaching assistant in a school and am continuing to work throughout the current national restrictions.


I tested positive for coronavirus on 10 September.


Marcus
Living with Colitis

I am on azathioprine and on the day that I tested positive I had just finished a course of prednisolone that was prescribed for a severe flare up but my experience was fairly mild. I had many of the symptoms, including a fever, cough and loss of taste and smell but it wasn’t anywhere near as bad as I imagined it would be. I had some lingering fatigue for probably 2 or 3 weeks after I recovered, but then got back to full health.

Whilst unwell, I kept a full symptom journey which you may find helpful and you can read that here. I hope my experience can ease the anxiety of others living with Crohn's or Colitis at this time.


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We know it can be difficult to live with, or support someone living with these conditions. But you’re not alone. We provide up-to-date, evidence-based information and can support you to live well with Crohn’s or Colitis.

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