What to do if you have Crohn’s or Colitis and think you are having a flare-up

26 March 2020

This guidance is for adults on what to do if you think you are having a flare-up and has been adapted to reflect the NHS response to coronavirus (COVID-19). 

Hospitals are undergoing significant changes as they adapt and respond to coronavirus. This will mean changes to outpatient clinics and adjustments to local IBD Team Adviceline support - so please keep this in mind if you are seeking advice.

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

What is a flare-up? 

A flare-up is when symptoms come back and you feel unwell. It will be very personal to you. The symptoms will vary from person to person, over time and will depend where Crohn’s or Colitis is in your gut.

Signs of flare-up can include:     

  • Going to the toilet more than 5 times in 24 hours – or more than is normal for you
  • Loose poo or diarrhoea with any blood or mucus for more than three days
  • Abdominal pain
  • Just generally feel worse, especially if you have a fever
  • Waking up at night to go to the toilet

You may also experience symptoms outside the gut during a flare-up such as:

  • Joint pain and swelling (arthritis)
  • Swelling in the eyes
  • Mouth ulcers
  • Skin rashes
  • Fatigue
  • Mental health problems

I'm having a flare-up - what should I do?

  • If you have a written personalised care and support plan or your IBD team have agreed with you previously what to do if your symptoms get worse please follow the specific guidance given by your doctor or nurse.
  • If you do not have a personalised plan contact your local IBD team Adviceline via telephone or email. 

Please be aware that our Helpline is not able to give individual advice on this.

Ulcerative Colitis

If you're experiencing a flare-up and are taking 5 ASAs you can change your medication dose without consulting your doctor. Although it is important that you make sure to inform your doctor or nurse of any changes as soon as possible by telephone or email.

If you are taking 5-ASAs, it is safe to double your daily dose for 6 weeks:

  • Salofalk: from 1.5g to 3g per day                                         
  • Asacol: from 2.4g to 4.8g per day
  • Mezavant: from 2.4g to 4.8g per day              
  • Pentasa: from 2g to 4g per day
  • Octasa: from 2.4g to 4.8g per day

Even if your symptoms settle quickly, continue taking the higher dose for 6 weeks then reduce back to the lower dose.

You may see your dose in g or mg. 1g = 1000mg, 0.8g = 800mg, 0.5g = 500mg.

If you are prescribed suppositories or enemas and you have a supply of these at home, start these as well as increasing your 5-ASA tablets. It is safe to take them every night to control your symptoms.

If you do not experience improvement contact your local IBD team Adviceline by telephone or email.

This advice does NOT apply if you have Crohn`s Disease or to any other medications you may be taking

When should I seek urgent or emergency care?

NHS guidelines currently advise people to stay home and avoid attending GP, pharmacy or emergency/urgent care services, unless you have been advised to do so. But you will know your body and condition better than anyone. If you feel you need emergency or urgent care telephone 111.

Some signs could include:

  • Stoma blockage: not passing wind or poo or passing watery poo, nausea, bloating or swelling tummy, tummy cramps, swollen stoma, nausea/vomiting or both.
  • Severe dehydration, malnourishment and vomiting.
  • Severe tummy pain, a high temperature and a rapid heartbeat.
  • All medicines have a small risk of side effects, such as chest pain, rapid heartbeat or hives. If you experience any side effects that you are worried about while taking your medicine, contact your IBD team or your GP as soon as possible.

Staying well

We want people with Crohn’s and Colitis to feel empowered to manage their condition. Our information resources and videos give a wealth of advice on how to manage symptoms, stay as well as possible and where to find emotional and peer support.

 Our top tips for keeping as well as possible are:

  1. If you don't have symptoms of coronavirus, continue taking your medication as normal unless your doctor or nurse have advised you otherwise. 
  2. Ensure you have a good supply of medicines should you need to self-isolate or shield yourself.
  3. Stay hydrated. If you are flaring and experiencing diarrhoea, it’s important to make sure you are drinking enough to replace what you have lost, and in doing so getting the right balance of sugars and essential salts into your body to keep hydrated. Our information gives tips and advice on how to stay hydrated.
  4. Eat well. Living with Crohn’s or Colitis may mean making some changes to your diet. You may need to avoid certain foods to help your symptoms or take extra care to make sure you’re getting the right nutrients. There’s no single diet that works for everyone – our information will help you understand how food affects your condition, so you can make the choices that are right for you.
  5. Take rest and sleep. Here are more tips on pacing, exercise and managing fatigue 
  6. Wash your hands frequently and avoid touching your face.
  7. Quit smoking as this increases the risk and severity of COVID19 infection.
  8. Avoid NSAIDs (non-steroidal anti-inflammatory drugs) such as ibuprofen.
  9. Protect your emotional and mental well-being. There are a number of excellent resources being produced to support people during Coronavirus from organisations like MIND and the Mental Health Foundation. However, if you are struggling with your Crohn’s or Colitis and would like to talk to someone we have information on IBD and counselling.

The Royal College of General Practitioners (RCGP) and Crohn’s & Colitis UK have created a number of Podcasts for people living with Crohn’s or Colitis on topics such as flare management, the role of the clinical nurse specialist and pregnancy.  You can download these from the IBD toolkit 

For more detailed information on which to assess your individual risk of Coronavirus and the most appropriate actions for you to take please go to our coronavirus FAQs 

Clinical guidance given by the Chair of the IBD Section of the British Society of Gastroenterology

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