Read our top tips for staying well

If you experience some of the symptoms associated with IBD for more than a few days this may be a sign that you are experiencing a flare of the disease.

What should I do if I experience a flare of my IBD?

If you are unwell you do not have to wait until your next scheduled outpatient appointment - get help now!

If you experience some of the symptoms associated with IBD for more than a few days this may be a sign that you are experiencing a flare of the disease. Even if you are not sure if it's a flare, it is very important to contact your healthcare team at the hospital as soon as possible. They will decide on the best course of action and it will be much easier to treat a flare in its early stages than to allow it to get worse. 

If there is an IBD nurse at your hospital,  get in touch with them to discuss your symptoms. If you do not have an IBD nurse then contact your gastroenterologist.  If you are asked to attend for an outpatient appointment, be prepared to answer questions about your symptoms:

This information is very important so that your healthcare team can make the right decisions about your treatment.

If there are symptoms that are causing you problems, particularly those which have an adverse affect on your quality of life, make sure to mention this to your doctor and work towards resolving it. 

Get to know your drugs

When we leave the doctor's surgery we often simply follow their instructions but do we really understand our treatment plan? You should really familiarise yourself with your treatment plan and in particular you should know the following about the drug(s) you are taking. If you don't understand, ask  your doctor, IBD nurse, or pharmacist:

The patient information leaflet for the drug or drugs that have been prescribed for you will tell you about their course of action and possible side effects and should answer most of your questions. If there is anything contained in the leaflet that you do not understand or that worries you, write down your questions and bring them along to your next appointment with your doctor. You can also ask your pharmacist who is highly educated about drugs. If your drug therapy changes please familiarise yourself with your new drug(s) in the same way. If you have not been given the patient information leaflet for your drug then go to www.medicines.ie and search for the name of your drug. This site contains the patient information leaflets for all drugs which are licensed in Ireland. 

If your drug isn't working, talk to your doctor!

You should not expect to remain on a particular course of drug therapy indefinitely without it bringing about remission. Some drugs should take effect quickly, others can take up to three months to work. By knowing this for your drug you should be able to tell if your drug is not right for you. For example, if you are experiencing a flare and your doctor prescribes a drug that should take no more than a month to take effect, then if you have not seen an improvement after two months, then it more than likely that this drug is not right for you. If your medication is not working you should discuss this with your doctor or IBD nurse specialist (if your hospital has one). If your symptoms do not improve (or worsen) contact your doctor or IBD nurse. It may be necessary to bring your next appointment forward. If your symptoms are bad and your appointment is cancelled or postponed do not be afraid to let them know that you need to be seen sooner. 

Remember: it's much easier to treat a flare in its early stages than to allow it to get worse. 

Do not stop taking your drugs without discussing it with your doctor

We all want to get well right? But sometimes people are unhappy to continue taking medication. Whatever the reason you should never do this without discussing it with your doctor first. And be truthful with your doctor, ask yourself 'what are the barriers to me taking this drug?' and discuss with your doctor or IBD nurse. People who stop taking their medication or don't take it as prescribed can suffer a setback in their recovery.  

A common reason for people to stop taking drugs is that they experience some side effects. Even the mildest of drugs carry the risk of side effects. Usually the benefits of taking the drug far outweigh any minor side effects and side effects may ease and disappear as your body gets used to taking the drug. If side effects bother you please discuss this with your doctor. Unless the side effects are dangerous, your doctor may ask you to be patient and persist to see if they will go away. If you do experience side effects that affect your quality of life adversely please discuss this with your doctor and see if there is an alternative drug that you could try.

Top Tips for Staying Well During a Flare

Watch your diet

If these self-management tips don't work, ask for a referral to a dietitian to discuss your own dietary and nutritional needs. 

During a flare of my Crohn's last year, I went back to the diet I last used when my dietitian was looking after me in hospital. I call it my 'white' diet... steamed fish, chicken breast, boiled eggs, steamed white rice, boiled potatoes (no skin). Until I get to my consultant or IBD nurse, this diet really worked wonders in minimising the effect of the flare.  

Peter (Dublin)

Treat your symptoms

If you are experiencing symptoms such as diarrhoea, spasm/cramp, extreme fatigue etc, talk to your GP or pharmacist about medication to control this. Combined with a change to your diet many people find that they can make a big difference to the impact of these debilitating symptoms.  

So there I was, doubled over with pain, and tied to the bathroom. I was afraid to leave the house. I never used to take anything for it and decided to call the ISCC one day. They recommended I have a chat with my pharmacist or GP and to get in touch with my gastro or nurse to see if I was in a flare. First I called my pharmacist and explained everything - they were fantastic! I got some over-the-counter medication which made a big difference straight away. I got to speak to my IBD nurse and she got me in for an appointment two days later. Sure enough they suspected a flare and changed my medication... I was soon on the road to recovery. So my advice is to get some advice... and act on it!

Margaret (Galway)

Keep track of your condition between visits to the doctor

It is very important to keep track of your disease in between visits. If you experience any symptoms you should keep a diary of these:

This information is very important so that your healthcare team can make the right decisions about your treatment. It is very important to continue taking your medication as prescribed even if you are feeling well. You should always keep your medical appointments even if you are experiencing no symptoms. 

If there are symptoms that are causing you problems, particularly those which have an adverse affect on your quality of life, make sure to mention this to your doctor and work towards resolving it. It is also helpful to contact the ISCC at this point. We may be able to help you to deal with some of your symptoms, and put you in touch with someone you can talk to who has had the same experience as you have.

Questions to ask your doctor about the drugs that have been prescribed for you

When we leave the doctor's surgery we often simply follow their instructions but do we really understand our treatment plan. You should really familiarise yourself with  your treatment plan and in particular you should know the following about the drug(s) you are taking. If you don't understand, ask  your doctor or pharmacist:

The patient information leaflet for the drug or drugs that have been prescribed for you will tell you about their course of action and possible side effects and should answer most of your questions. If there is anything contained in the leaflet that you do not understand or that worries you, write down your questions and bring them along to your next appointment with your doctor. You can also ask your pharmacist who is highly educated about drugs. If your drug therapy changes please familiarise yourself with your new drug(s) in the same way. If you have not been given the patient information leaflet for your drug this can be found on www.medicines.ie.

You should not expect to remain on a particular course of drug therapy indefinitely without it bringing about remission. If your medication is not working you should discuss this with your doctor or IBD nurse specialist (if your hospital has one). If your symptoms do not improve (or worsen) contact your doctor or IBD nurse. It may be necessary to bring your next appointment forward. If your symptoms are bad and your appointment is cancelled or postponed do not be afraid to let them know that you need to be seen sooner. 

Side effects of drugs

Even the mildest of drugs carry the risk of side effects. Usually the benefits of taking the drug outweigh any minor side effects and side effects may ease and disappear as your body gets used to taking the drug. If side effects bother you please discuss this with your doctor. Unless the side effects are dangerous, your doctor may ask you to be patient and persist to see if they will go away. If you do experience side effects that affect your quality of life adversely, please discuss this with your doctor and see if there is an alternative drug that you could try.

Do not stop taking your drugs without discussing it with your doctor.

This could cause a setback in your treatment. Please refer to the patient information leaflet for your particular drug(s). This will tell you everything you need to know about your drug, as no two drugs, even in the same category, will have exactly the same properties or side effects. If you have not been given the leaflet, you can find it on www.medicines.ie. This site provides leaflets for all drugs that are prescribed in Ireland.

It is very important to continue taking your medication as prescribed even if you are feeling well. You should always keep your medical appointments even if you are experiencing no symptoms.