Answers to your questions...

IBD Facts and Figures

Is IBD the same as IBS?

IBD stands for Inflammatory Bowel Disease; IBS stands for Irritable bowel syndrome. Both conditions can produce similar symptoms but in the case of IBS there is no clear evidence of inflammation present. They are two very different disorders with IBD requiring specialist follow up.

What is the prevalence and incidence of IBD in Ireland?

There is no official database which gives accurate figures but it is thought that at least 40,000 people are living with IBD in Ireland. There were 5.9 new cases of Crohn's disease in Ireland per 100,000 population in 2011 and 14.9 new cases of ulcerative colitis (although the incidence of Crohn's disease is higher than ulcerative colitis in children). Males and females are affected equally. Patients can be diagnosed at any age with the peak age of incidence being between the ages of 15 and 35, with a second (smaller) peak from the 50s to 70s. IBD diagnosed in children can behave differently and can be treated differently to that diagnosed in adults.

What is Crohn's colitis and how does it differ from ulcerative colitis?

Crohn's disease can sometimes affect the colon in which case the disease is referred to as Crohn’s colitis. There are some pathological differences between the two diseases therefore this term is used to distinguish ulcerative colitis from Crohn's disease where the colon is affected.

What is indeterminate colitis?

In some cases where the colon is affected, it is not clear whether the disease is Crohn's disease or ulcerative colitis. In such cases the disease is described as "indeterminate colitis" or IBDu - Inflammatory Bowel Disease unclassified.

What is microscopic colitis?

This is another form of IBD, and as it affects the colon it falls under the heading of colitis. It is a less well-known form of colitis than ulcerative colitis and was not first described until 1976. Microscopic colitis is where the lining of the colon appears normal (unlike ulcerative colitis where inflammation is observed). It can be further broken down into collagenous colitis and lymphocytic colitis. The main symptom of both is watery diarrhoea which leads it to also have the name 'watery diarrhoea syndrome'. Weight loss is uncommon. The majority of diagnoses occur in middled-aged females. It is an idiopathic (of no known cause) disease and it usually responds well to treatment.

Microscopic colitis derives its name because it must be diagnosed under microscope. This is a challenging condition for doctors to diagnose. Although the symptoms may lead a doctor to request a colonoscopy for the patient, no visible inflammation is seen (unlike ulcerative colitis) and a biopsy must be taken to reach a diagnosis. Even if the doctor suspects microscopic colitis, diagnosis is not straightforward. Biopsies must be taken from an affected part of the bowel, yet it is not possible with the naked eye to see which part is affected and which is healthy. Therefore biopsies must be taken from the entire colon. Biopsies may otherwise be taken from healthy bowel which will not show anything unusual when analysed.

The ISCC welcomes members with microscopic colitis and can provide you with information leaflets and support in terms of living with this condition.

Is there is a genetic component associated with the incidence of IBD, is it possible to be screened for IBD?

Genetic screening is not available for IBD at present, however you should mention to your doctor if there is any member of your family with a diagnosis of IBD.

Living With IBD

What is the impact of living with IBD?

A major pan European survey of patients with Crohn's disease and ulcerative colitis was undertaken in 2011. The survey, called "Impact" surveyed almost 5,000 people including over 100 in Ireland.

  • Less than 30% of patients in Ireland received a positive diagnosis within six months of onset of symptoms (Q2)
  • More than 50% of patients in Ireland have had surgery in the last five years (Q6)
  • More than 90% of patients in Ireland have been hospitalised in the last 5 years (Q8)
  • More than 93% of patients in Ireland have experienced at least one flare-up of their disease in the last two years (Q27)
  • IBD can have a significant adverse impact on career (Q45-51), relationships/friendships (Q52-54), and achieving full potential in an educational setting (Q55)
  • Almost 60% of patients in Ireland felt more optimistic after meeting others with the same condition (Q57)
  • 69% of patients in Ireland felt a positive impact on their life by being part of a patient’s association (Q60)
  • The full results of the IMPACT survey Ireland Country Report can be downloaded here: Country Report: Ireland.

What can be done to minimise the impact of living with IBD?

The ISCC  has produced the following list of 'Top Tips' to help you along the way. Read through them slowly and carefully and pick out some that you can start working on today. The ISCC is here to support you, so please contact us if ever you feel we can be of help.

  • In control - learn about IBD and take control of your illness
  • Involve your family and friends - they will provide much-needed support
  • Invest in yourself - reduce stress and try yoga/hot bath/long walk - any form of time out
  • Internet sources - are not always accurate - don't stress about what you read, ask your doctor or IBD nurse any questions
  • ISCC provides information, patient support and organises meetings and events - contact us!
  • Be careful with your medications - always follow doctor's guidance
  • Be proactive - contact your doctor/nurse when you are unwell
  • Be prepared - if you have symptoms - plan ahead
  • Be in tune - with your body and know your limits
  • Be positive - things will get better and don't sell yourself short
  • Discuss every symptom with your doctor or IBD nurse - IBD can have many manifestations so ask him/her everything!
  • Document your symptoms between hospital visits - it will make your consultation easier and better for all
  • Don't worry about talking about IBD - it will help
  • Don't be afraid to say NO! You aren't superman/superwoman especially when experiencing symptoms
  • Diet changes can help some people especially in flares - seek advice and don't be afraid to try new things

Is it possible to exercise if I have IBD?

During flares of the disease, strenuous exercise may not be possible and it is advisable to rest which helps the healing process. Light exercise is advisable, but you should only exercise within your limits. When you are in remission, there is no reason why you cannot exercise and people who are living with a chronic condition are advised to introduce exercise into their lives. Sedentary activity can lead to secondary disease such as cardiac disease. If you have experienced a particularly challenging period because of your condition and have been inactive for a prolonged period, consider seeing a chartered physiotherapist who can give you an exercise prescription appropriate to your current level and help you to reintroduce exercise into your routine.

Medical Expenses, Medical Card, GP Visit Card and Long Term Illness Scheme

Am I entitled to the Medical Card or GP Visit Card if I have IBD?

Having a diagnosis of IBD does not automatically entitle you to either the Medical Card or GP Visit Card and your eligibility for either card will be means tested in the normal way.

How do I claim health or medical expenses tax relief?

You can claim tax relief in respect of certain medical (and dental) expenses going back up to four years. If you have a private health insurance policy that provides for you to claim back a portion of your day-to-day medical expenses, these must be claimed first, and your claim for tax relief will be based on the balance.

A word of caution: Although you can claim tax relief going back four years, the time limit for claiming reimbursement from your health insurer is usually very tight (usually soon after the renewal date of the policy) so be sure to get your claim in fast!

The Med1 form is no longer available. You can claim medical expenses through your  tax return form. You will need your P60 (and that of your spouse, if applicable) before you can claim your tax back. More details can be found online at www.revenue.ie.

What is the Long Term Illness scheme and is IBD included on the list of prescribed illnesses?
The Long Term Illness Scheme entitles people who are living with certain long term illnesses or disabilities to avail of drugs and appliances directly related to the treatment of their condition, free of charge. IBD is not on the prescribed list of conditions, which has not changed since the 1970s. The ISCC has long lobbied on behalf of those who are living with IBD to be included on this list but to no avail. If you are not entitled to either a Medical Card or GP Visit Card, you can avail of the Drugs Payment Scheme.

What is the Drugs Payment Scheme?

Under the Drugs Payment Scheme, an individual or family who does/do not qualify for a Medical Card must pay a maximum of €124  per month for approved prescribed drugs, medicines and certain appliances for use by that person/family in that month. As IBD is not included on the list of illnesses on the Long Term Illness scheme, you should apply for a DPS card if you do not qualify for a Medical Card and are on long term medication. Full details can be found on the Drugs Payment Scheme page of the HSE website.

I have a private health insurance policy, can I claim for day-to-day expenses such as visits to my GP or consultant?

This depends on your policy. Not all private health insurance policies allow you to claim reimbursement of day-to-day expenses (such as visits to your GP, consultant, dietician, physiotherapist etc). Policies that do allow for this will cost more. You should check your policy.

A word of caution: The time limit for claiming reimbursement of day-to-day expenses is usually very tight (usually soon after the renewal date of the policy) so familiarise with the time limits attached to your policy as you may need to get your claim in fast!

IBD and Private Health Insurance, Travel Insurance & Life Assurance Products

Are there any implications of having IBD when applying for life assurance products?

If you have Crohn's disease or ulcerative colitis, you might encounter some difficulties when applying for insurance products such as life assurance/mortgage protection, income protection and serious illness protection. These could range from being charged a higher premium (this is called "loading") or even having your application declined. This need not be the case. Some insurance companies have done more research than others into the relative risks associated with certain conditions and it is better to approach these companies. 

Are there any implications of having IBD when applying for travel insurance to cover medical expenses abroad?

The cost of healthcare abroad can be prohibitively expensive if you have not made prior arrangements. The ISCC therefore strongly recommends that you ensure that arrangements are in place to cover medical expenses, in the event that you fall ill abroad. If you are living with Crohn's disease or ulcerative colitis, it is important to get into the habit of leaving enough time to make the necessary arrangements prior to travel. These arrangements will depend on your destination and the length of your stay. The most common ways to make such a provision are:

  • in the UK the NHS will provide healthcare to Irish citizens
  • within the European Union, European Economic Area, and Switzerland, the European Health Insurance Card will provide free or subsidised healthcare (you must apply for this card in advance)
  • worldwide - a private health insurance policy may cover health expenses (check your policy carefully for details of what is covered and that you are not in a waiting period for a pre-existing condition)
  • worldwide - a travel insurance policy that will cover pre-existing conditions (do not assume that all travel insurance policies will cover pre-existing conditions, check before purchasing)
  • a combination of the above

United Kingdom

Irish residents are entitled to healthcare from the NHS whilst on a temporary visit to Great Britain or Northern Ireland. You just need to provide some evidence that you are ordinarily resident in Ireland e.g. passport, driving licence. Citizens of the UK are equally entitled to free healthcare when in Ireland. This does not mean that you should not purchase travel insurance, but you will have the comfort of knowing that you will receive emergency treatment for your IBD should you need it, and do not necessarily need a policy that covers pre-existing conditions.

Europe

For travel within the European Union, European Economic Area, or Switzerland, you should apply for the European Health Insurance Card.  You can apply for this card online on www.hse.ie or at your local health clinic. The EHIC will entitle you to free or subsidised healthcare in those countries should you require it. Make sure to apply in advance of your trip as it can take two weeks to receive the card from date of application. This does not mean that you should not purchase travel insurance, but you will have the comfort of knowing that you will receive emergency treatment for your IBD should you need it, and do not necessarily need a policy that covers pre-existing conditions.  EHIC does not replace travel insurance. It only covers necessary healthcare.

Worldwide

There is no provision for Irish citizens to receive free or subsidised treatment in any country outside the jurisdictions covered by the EHIC above. For travel to countries outside this area (including popular destinations such as the United States, Canada, Australia and New Zealand), the most straightforward way to have cover for pre-existing conditions is to have a health insurance policy that covers medical expenses abroad. If you have private medical insurance you should check what cover is available should you fall ill abroad, and always make sure you have the necessary proof of insurance with you when you travel should you need it. Health insurance policies will not normally cover pre-existing conditions until the policy has been in effect for five years so it is not as simple as just buying a health insurance policy before your trip.

If you do not have health insurance, you may need to purchase a travel insurance policy that covers pre-existing conditions such as Crohn's disease and ulcerative colitis. Otherwise you will have to pay for treatment yourself if you fall ill with your Crohn's disease or ulcerative colitis and need treatment. Not all companies will cover pre-existing conditions so you will have to shop around. For those companies that do provide cover for pre-existing conditions it usual that they will require you to declare your condition in advance and/or go through a medical screening process and underwriting. It is therefore essential that you do not leave this to the last minute. We do not provide a list of insurers on our website but contact us if you are having difficulty getting cover as we may be able to give you some guidance.

A word of caution: It can be very quick and easy to purchase travel insurance online and many of us may make the mistake of leaving this until the last minute. Apart from the obvious hurdle of getting cover for a pre-existing condition there can be limitations and exclusions to travel insurance policies that you may not have expected. You should ensure that you read in detail the terms and conditions attached to any policy you intend to purchase and get into the habit of planning for travel insurance (if you need it) well in advance of your trip. Not all travel insurance policies cover medical expenses related to pre-existing conditions such as Crohn's disease and ulcerative colitis, so it is important to check before you purchase any policy that it will cover medical expenses related to these conditions. Some policies will only provide cover if you already have a private health insurance policy in place, and will only pay any excess over and above what will be paid by the health insurance policy first. Others will require you to declare that you have Crohn's or colitis when purchasing the policy, which may or may not involve a medical screening by telephone.

Remember that travel insurance also covers things such as cancellation and curtailment, medical expenses following accident or illnesses (other than IBD), baggage, theft and loss of valuables etc. So even if you have other arrangements in place to cover medical expenses for your Crohn's or colitis, you may still want to purchase travel insurance to cover other eventualities.

Please note that this information relates to short-stay visits abroad. If are going abroad on a longer-term basis to study or work, you may need to make further arrangements to cover medical expenses.

Are there any implications of having IBD when applying for health insurance?

Health insurance companies do not normally cover "pre-existing" conditions when a new policy is purchased. This means that if you apply for health insurance for the first time after you have been diagnosed with Crohn's disease or ulcerative colitis, you will be subject to a "waiting period" before you will be covered for treatment in relation to your Crohn's or colitis. This usually also applies when upgrading your health insurance i.e. the increased level of cover may not apply to pre-existing conditions until the waiting period has elapsed. Under Irish law, the maximum waiting period that a health insurance comply can impose in relation to pre-existing conditions is five years.

It is important to keep in mind that health insurance is there to provide cover in the event of the unexpected and not just for your IBD. In addition, having health insurance usually gets you around the travel insurance hurdle as most policies will cover health expenses when you are abroad. This is particularly useful for travel outside the European Union where you are not covered by the European Health Insurance Card, and would therefore be strongly advised to purchase adequate travel insurance. It can however be difficult to get a travel insurance policy that will cover you for a pre-existing condition such as Crohn's disease or ulcerative colitis.

Is it better to have my own health insurance policy or health insurance that is offered as part of my benefits at work?

Before you cancel your own health insurance policy in favour of a corporate policy you must check some very important details first. Many corporate policies may look very attractive and some may even waive the waiting period for pre-existing conditions such as Crohn's disease and ulcerative colitis. If you leave your job and need to apply for your own health insurance policy you may be subject to a waiting period for your Crohn's or colitis. If this is the case and having private health insurance is important to you, then you may consider it more important to continue with your own policy to ensure that you maintain continuity of cover.

I intend to move abroad, should I cancel my health insurance policy in Ireland?

Before you cancel a private health insurance policy in Ireland if you move abroad, you should be aware that if you return to live in Ireland and wish to apply for health insurance again, you will be subject to a waiting period (usually five years) to cover pre-existing conditions. If you do not intend to move abroad permanently and having private health insurance is important to you, then you may consider it more important to continue with your policy to ensure that you maintain continuity of cover. This would also provide you with a safety net in case you wanted to come back to Ireland for private treatment should you have a flare of your Crohn's or colitis.

You may consider maintaining a policy at a reduced level of cover, which will obviously cost less. However, on your return to Ireland if you upgrade your level of cover again, you should be aware that waiting periods also apply to upgrading health insurance i.e. the increased level of cover may not apply to pre-existing conditions until the waiting period has elapsed.

Where can I obtain detailed impartial information about the health insurance market in Ireland?

The Health Insurance Authority is a statutory regulator of the private health insurance market in Ireland. On their website you will find a health insurance comparison section and you can download the booklet 'Private Health Insurance - My Rights My Choices'. Information is also available on waiting periods (for pre-existing conditions), switching plans, cancelling policies, corporate plans, claims and excesses, and cash plans.

Travelling With IBD

Is it possible to travel with IBD?

As with anything else, any trip requires planning so that everything goes smoothly. You should get into the habit of planning well in advance for your trip. If you have a ready-made plan in place for every time you travel, your planning becomes easier with practice. If you are living with IBD, it's simply a case of adding a few extra items to your list of things to do. Some of these things may take a little longer than others, so it is very important not to leave these to the last minute. If it's a last-minute trip, recruit the help of family and friends to help you get everything ready in time.

Remember to bring your  foreign language 'no waiting' card(s) with you, so you can access a toilet urgently, should you need to. These cards are a translation of our membership/no waiting card which are issued to our members on joining/renewing their membership.  They are also available on the ISCC app, IBDWell.

Probably the most important concern is to ensure that you have access to healthcare at your destination should you need it. Irish citizens are entitled to free care from the NHS in the UK and within Europe you are entitled to the European Health Insurance Card. Outside Europe, the best option is to have a private medical insurance policy that covers worldwide travel,   as not all travel insurance policies will cover pre-existing conditions such as IBD. For more information see our FAQs under the heading of insurance.

If you are currently taking prescription medication for your IBD (or for any other reason) calculate how much you will need to cover the duration of your trip and make sure you have enough before you leave.  It is a good idea to bring an up-to-date copy of your prescription with you. Some medication needs to be refrigerated, so you may need a cool-box or pack to carry it - check with your pharmacist, if unsure. Check if there are any restrictions on bringing medication into the country to which you are travelling, as it may be necessary to get a letter from your doctor to accompany the medication. You should carry your medication in your hand luggage in case checked-in luggage doesn't arrive when you do!

When you are checking in to your accommodation, take note of information relating to local access to a GP or hospital in case you should need it.

Get reliable information from the internet regarding the quality of local food and water. Drink only bottled water if this is recommended at your destination, even when brushing your teeth. Avoid ice cubes and be careful in swimming pools and showers not to swallow any water.

So long as you are not experiencing a bad flare of your disease you should be able to enjoy travelling as much as anyone else. Bon voyage!

Is there something I can carry with me to tell people that I have IBD in case of an emergency?

In case of emergency, it is advisable to carry something with you which will give the emergency services or local doctors quick and easy access to your personal information, medical history, contacts back home, details of health insurer/travel insurance etc. Some people find it helpful to print these details on a small card, which can be carried in their wallet, alongside the European Health Insurance Card. In Europe, your EHIC will entitle you to emergency care, so it is important to keep this on your person at all times. If you are travelling with a companion, please make sure that they know where to find your prescription/ insurance details/ your Irish consultant's number/ hospital number. 

Several companies produce jewellery which highlights that you have a medical condition and would attract the attention of the emergency services or healthcare professionals. 

I am taking the drug Humira (Adalimumab) and I hear I need to take precautions when transporting the drug?

The drug Humira must be stored at a certain temperature at all times. The pharmacist who dispenses the drug for you should be able to advise you on how to travel with Humira. You should also:

  • carry a letter from your doctor explaining what Humira is and how is it administered, that is is solely for your own personal use, how much you will be taking during your trip, and that you must carry the pens on board aircraft if necessary
  • keep the Humira in its original packaging with your name and dose clearly visible
  • check with the airlines and/or airports you will be using that you will be able to carry the Humira pens through airport security and on to the aircraft

You may need a larger coolbox if you will be away for a longer period and need to transport several boxes of Humira. Cool boxes and ice-packs are available in shops that specialise in the outdoors and camping. 

Are there any precautions I need to take when travelling to a country that requires vaccination before travelling?

People who are living with IBD are advised to get vaccinated when travelling to destinations requiring vaccinations. You cannot however be given live vaccines if you are taking immunosuppressant medications. If you are not sure what category of medication you are taking, check with your doctor and ensure that the doctor who is giving you the vaccine is made aware of this.

Do you provide the No Waiting card in any language other than English?

Yes, we have our 'no waiting' card translated into sixteen of the most commonly-used languages, as well as in English. These cards are provided on joining the ISCC or on membership renewal. They are also available to members on our IBDWell app. 

Medication and IBD

Is it possible to live without medication if I have IBD?

You should never stop taking drugs that have been prescribed for you without medical supervision. In some cases, where people have been living symptom free for an extended period of time, it may be possible to live without medication. This is a very serious decision to take which must be made in consultation with your doctor. You must never stop taking medication that has been prescribed to treat your IBD without medical supervision as this could cause a flare.

As IBD is an autoimmune disease, does all medication to treat IBD suppress the immune system?

Many categories of drugs used to treat IBD suppress the immune system but not all. For example some drugs are anti-inflammatory drugs only which are not intended to suppress the immune system. You should ask your doctor what categories of drug(s) you have been prescribed and what precautions to take.

I have been prescribed drugs which suppress the immune system. What precautions should I take?

If you are taking drugs which suppress the immune system, you will be more prone to infection. You should take all practical precautions to avoid catching infections, such as common cold and flu. It is important to look out for infection and recognise and treat them early. Bloods should be checked regularly and vaccinations are recommended. However live vaccinations are not recommended if you are taking immunosuppressive drugs, so seek advice from your doctor first.

I hear it is inadvisable to take ibuprofen for pain relief if I have IBD?

Ibuprofen falls under the category of Non Steroidal Anti Inflammatory Drug (NSAID). This classification of drug can increase the risk of a flare of IBD, you should discuss the risk with your doctor before taking any of the drugs in this category, many of which are available over the counter in Ireland.