Questions & Answers

13.

Can I take my usual medication safely during pregnancy?

Most drugs used to treat IBD can be taken safely during pregnancy. Ideally it would be better to be well and not on any medication, but if you do have to take any drugs, the general consensus of medical opinion is that you should take whatever is needed to maintain remission. The active IBD is far more detrimental to the developing baby than the medication.

However, there are some drugs that should not be taken during pregnancy e.g. methotrexate, infliximab and some antibiotics such as ciprofloxacin. If you are pregnant or planning a pregnancy always make sure that you discuss with your doctor whether it is safe to take your particular IBD medication during pregnancy.

For more detailed information see the leaflet on 'Fertility, women and IBD'.

Don't worry if you haven't got this leaflet - just click here to find out how you can order it or read a summary online.

14.

Will my children get IBD too?

Although there is a genetic tendency in the development of IBD, it is not directly hereditary. If only one parent is affected the risk of the child being affected is low. The highest risk to a child is if a sibling is affected, particularly with identical twins, because the same genes are shared.

However, genetics alone do not determine the development of IBD and at least one environmental factor (e.g. diet, infection) is probably needed to trigger the disease.

For more detailed information see the leaflet on 'Genetics and heredity in IBD'.

Don't worry if you haven't got this leaflet - just click here to find out how you can order it or read a summary online.

15.

I have had to give up my job because of my IBD. What financial support am I entitled to?

You may be entitled to claim disability living allowance (DLA) whether or not you are working, have anyone else to support you, or have savings of any kind. The term 'disability' can seem confusing as people with IBD are often not obviously disabled but may have difficulty with some day-to-day activities.

When making a claim talk to your doctor and IBD nurse, as they can help you to include all the relevant information. The NACC has produced an extensive document that gives helpful information and guidance on completing the forms.

Do not give up if your claim is refused the first time - try again.

Contact the NACC DLA benefit support line (0845 130 4455) for further details.

Also, contact your local Citizen's Advice Bureau for information on other benefits you might be entitled to.

16.

I have to take long-term medication because of my IBD - can I get free prescriptions?

Unfortunately, people with IBD are not exempt from prescription charges, despite campaigns for this concession. However, you can buy a prescription 'season ticket', which means all your prescriptions are pre-paid for a specified length of time. This is often better value than paying for each prescription individually.

For more detailed information contact your GP surgery.

17.

Where can I find more information about IBD and access to support groups that might be helpful?

There is now a wealth of information available to people with IBD, providing practical tips on how to cope with IBD in everyday life. It is important to gather as much information as possible in order to help yourself to stay fit and well.

The National Association of Colitis and Crohn's disease (NACC) provides extensive information and support for patients and their families. They also organise meetings and social events where patients can meet, talk and provide support to other IBD patients, knowing that they are talking to someone who really understands. There may be a local group in your area - check out their website (www.nacc.org.uk), or you can e-mail them at nacc@nacc.org.uk, or phone them on 01727 844296.

The Digestive Disorders Foundation (DDF) also provides a full range of information for patients and provides research grants for doctors working in the field of IBD. Contact the DDF at PO Box 251, Edgware, Middlesex HA8 6HG, via their website (www.digestivedisorders.org.uk), or by phone on 020 7486 0341.

The Department of Gastroenterology at Addenbrooke's Hospital has developed an extensive amount of information on IBD, which is available on their website (www.crohns.org.uk).

Click here for the details of other useful organisations, or click here to order the IBD Club leaflets or to read a summary online.

18.

What causes IBD?

The cause of IBD is still unclear but involves interaction between a person's genes, their immune system and their environment. Possible environmental factors include diet, drugs (such as non-steroidal anti-inflammatory drugs used in treating arthritis), infections (such as gastro-enteritis or some viral illnesses) and smoking. These factors may trigger the immune system to behave in a way that causes chronic inflammation in a particularly susceptible individual. Triggering factors vary considerably between individuals and at different stages of life. Most of the treatments used to control IBD work by altering the immune system in some way.

Many doctors believe that the normal bacteria that live naturally in the gut can sometimes induce inflammation. Modifying the diet with elemental and exclusion diets (to alter the balance of the bacteria) can be beneficial in Crohn's disease. Before you modify your diet, it is important that you discuss it with your doctor or IBD nurse first.

For more detailed information see the leaflet on 'Causes of ulcerative colitis and Crohn's disease'.

Don't worry if you haven't got this leaflet - just click here to find out how you can order it or read a summary online.

19.

I have just been told that I have IBD, does this mean I will end up with a 'bag'?

Most cases of IBD (even the more severe cases) can be successfully treated with a combination of diet and/or drugs. Surgery is usually reserved for extreme cases where medication may have failed to control the disease, or to deal with the complications of IBD, such as complex fistulas and abscesses that require drainage.

For more detailed information see the leaflet on 'Surgery and IBD'.

Don't worry if you haven't got this leaflet - just click here to find out how you can order it or read a summary online.

20.

Can IBD ever be cured?

There is no permanent cure for IBD but with regular treatment it is possible to achieve long periods of remission. In most cases the disease eventually 'burns out' although it can take many years before this happens. In ulcerative colitis, removal of the colon provides the only 'cure'. The individual is then left with an ileostomy (bag), although in many cases it is possible to perform an internal pouch operation instead.

For more detailed information see the leaflet on 'From diagnosis to prognosis'.

Don't worry if you haven't got this leaflet - just click here to find out how you can order it or read a summary online.

21.

What can I do to prevent a flare-up?

The most important factor in preventing a flare-up is to continue taking regular medication as prescribed by your doctor, even when the IBD is under control. If you stop your medication the IBD will come back, although this may not happen straight away. Do not allow your medication to run out - always ensure that you have adequate supplies.

There are certain factors which are known to trigger an attack, such as smoking (in Crohn's disease), drugs used to treat arthritis (such as non-steroidal anti-inflammatory drugs or NSAIDs), gastro-enteritis, diet and stress. Avoiding such factors can help to avoid a relapse.

For more detailed information see the leaflets on 'Preventing flare-ups and dealing with everyday illnesses' and 'How to maintain remission'.

Don't worry if you haven't got these leaflets - just click here to find out how you can order it or read a summary online.

22.

Can you tell me which foods can aggravate IBD?

Some types of food (e.g. wheat products, dairy products, fibrous or fatty foods) can aggravate Crohn's disease, but ulcerative colitis is not generally affected by diet. However, it does not mean that the same foods will upset everyone. It is important that you work with your own doctor or IBD nurse, to find out which particular foods you should normally avoid.

Don't avoid foods because of what you've heard, as this may mean you miss out on essential nutrients. Any special diet should be drawn up with supervision from experienced doctors and dieticians.

For more detailed information see the leaflet on 'Diet and IBD'.

Don't worry if you haven't got this leaflet - just click here to find out how you can order it or read a summary online.

23.

How do I know if I am having a flare-up?

The first sign of a flare-up may be an unsettled stomach and discomfort in the lower abdomen, followed by diarrhoea. Passing mucus may be an early sign of colitis, followed by bleeding as the inflammation becomes worse. As you become more familiar with the pattern of your IBD, you will be able to recognise these early warning signs and seek prompt advice on treatment.

For more detailed information see the leaflets on 'Preventing flare-ups and dealing with everyday illnesses' and 'How to deal with a flare-up'.

Don't worry if you haven't got these leaflets - just click here to find out how you can order it or read a summary online.

24.

What should I do if I think I'm having a flare-up?

The sooner you start to treat the flare-up, the more successful your treatment (as advised by your doctor or IBD nurse) is likely to be. This will help you to prevent a more severe attack. If you are unsure whether your symptoms are due to a flare-up of IBD, or if your symptoms fail to improve with your usual treatment, do not hesitate to call your GP or IBD nurse specialist as soon as possible for their advice.

A more severe flare-up may require additional treatment. You should consult your GP or IBD nurse as they will advise you whether you need to start any new treatment.

Flare-ups of Crohn's disease, wherever they occur, can be treated with medicines and/or a specialised diet. If you have not been on dietary treatment before, you will need to discuss this first with your GP or IBD nurse so that an appointment with a dietician can be arranged.

For more detailed information see the leaflet on 'How to deal with a flare-up'.

Don't worry if you haven't got this leaflet - just click here to find out how you can order it or read a summary online.