Frequently Asked Questions

Please note that our experts can only address your questions in general terms and their responses are not a substitute for a visit to your own treating doctor.

Donating Blood

Travelling with IBD

Genetic Factors

Reducing Symptoms

Depression and IBD

Supplements

Question:
Can people living with Crohn’s disease or ulcerative colitis donate blood?

Answer:
Australian Red Cross Blood Service does accept donors with IBD to donate provided they are well and off immunosuppressive medication for a minimum of 4 weeks. The Australian Red Cross Blood service is only able to use the plasma component of the donation for transfusion purposes. Donors presenting to donate are in most circumstances referred to the duty Medical Officer, in order to assess whether they are suitable.

If you would like further information, please contact the Medical Officer at the Australian Red Cross Blook Service on (03) 9694 0260.

Question:
I have recently been diagnosed with inflammatory bowel disease and am currently well. I am planning to travel around the world with a friend for a year. In particular we want to stay and work in America and Europe. Please can you advise me if I am still 'OK' to travel with my condition and if so, how I can buy medications while away and be best prepared?

Answer:
The most important thing that an IBD patient should understand is that they should have a normal or very near normal quality of life with few, if any restrictions and they should not be happy until they do! So it is absolutely OK to travel and all you need to do is take some common sense precautions. The first is to make sure you are well (in remission) prior to travelling - going away while you are flaring would make things difficult. Next, you need to make sure that you have an adequate supply of medications for your entire trip as you do need to stay on medicines while you are away. This is really a practical issue but I believe it would be best to have your supply of medicines from Australia.

Therefore you will need to take some with you initially and have a system worked out on how to get repeats sent over - this will be far easier than getting them abroad which would be expensive, especially in the US, and availability may be different to home. I think this is the most important practicality to sort out before you go. The most important thing is that you keep taking the medicines exactly as if you were at home. A brief letter from your doctor saying that you have IBD may be helpful in expediting sending and receiving of medicine, and also some form of travel insurance would be a good idea. In the event that you do have a flare, it needs to be treated quickly just as if you were at home.

I would use the IBD websites overseas to find a doctor with IBD experience such as http://www.ccfa.org/ in the USA. Contact your home doctor, as they may know someone with IBD experience where you plan to travel. It is difficult to be more specific than this as obviously you'll be moving around. Careful planning regarding medical insurance and contacts is important in the event that you need medical attention while abroad. Otherwise it makes sense to drink bottled water in less developed areas, as travellers should anyway, just because you can get an infectious diarrhea just like anyone else. With regard to diet there are no particular restrictions, but obviously just avoid anything you notice triggers your symptoms at home. I hope this is helpful to you. Happy and safe travels,

Dr. Miles Sparrow
Director Inflammatory Bowel Disease Clinical Trials
Department of Gastroenterology
Box Hill Hospital
Melbourne

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Question:
I suffer with Crohn's disease and have 2 children who are 6 and 9 years old. Please can you let me know what the chances are of them also developing the disease and if there is anything I can do to reduce this risk?

Answer:
We know that genes play an important role in the development of IBD. It is, therefore, unsurprising that people who have IBD sometimes worry about the risk of one of their children also getting the disease. However, research has shown that there is more than one gene involved with more being discovered every year.

It is also important to remember that many other factors are involved in the development of IBD. It is, therefore, difficult to give exact estimates of the risk getting IBD if you have a first-degree relative (i.e. a parent, sibling or child) who has either Crohn's disease or ulcerative colitis.

Currently, we think the risk of an offspring of someone with Crohn's disease also developing Crohn's is probably in the order of 5-10%, while that for UC is a little less. The risk is a slightly higher than this for siblings of someone with IBD, but a little less for parents. We also know that having more than one first degree relative with IBD increases the risk further and that in the very rare situation of both parents having IBD, that there is a considerable increase in risk that any of their children will also develop IBD.

As with many conditions in which genes play a role, there are some racial groups who are at higher risk. For example, in some parts of the Jewish community the risk is a little higher than those quoted above.

As to preventing offspring getting Crohn's, breast-feeding is probably protective and children of parents with Crohn's should never smoke (when they are old enough!). Possibly passive smoking is a risk but there is very little data on this. If either parent is a smoker then they should probably stop.

Dr Peter Irving, MD, MRCP, MA, MBBS
Gastroenterology Fellow,
Box Hill Hospital, Vic

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Question:
I am a 40-year-old man with Crohn's disease. I have had two resections of my small bowel and take Imuran and Mesalazine. My doctor tells me my Crohn's disease is in remission but I am constantly troubled with diarrhoea. Is there anything I can do to help reduce the amount of diarrhoea I suffer?

Answer:
Diarrhoea is a common symptom associated with Inflammatory Bowel Disease (IBD), including Crohn's disease and ulcerative colitis.

Diarrhoea in IBD may be a result of active disease in the colon where there is swelling and ulceration (inflammation). The colon therefore does not absorb the excess water in stools, resulting in loose stools or diarrhoea. It is imperative to treat the underlying inflammation in order to relieve the symptoms and to prevent worsening of the condition.

Another common cause of diarrhoea is bile salt irritation. Bile is produced by the liver and is important for fat digestion. It is usually reabsorbed in the terminal ileum (the last part of the small bowel). If the terminal ileum is affected by active Crohn's disease or if it has been removed by surgery, excessive bile is released into the large bowel and subsequently results in diarrhoea.

A lower fat diet or the use of Questran (Cholestyramine) may help this. Your specialist can advise on the dose, which needs to be titrated carefully to avoid constipation. Questran may interfere with the absorption of some drugs so it is important to check with your doctor or pharmacist.

A number of people may have diarrhoea due to food sensitivity (or intolerance). This is not the same as food allergy, which is very rare and involves the body immune system producing antibodies to a specific food substance.

In some cases sensitivity results in a reaction to some food substances although the immune system is not involved. Some of these culprits may be milk, wheat, excessive fibre and fructose (a common sugar found in fruit). They may cause abdominal discomfort, bloating, abdominal pain and diarrhoea. Identifying the problem foods and reducing their intake may provide relief. Advice from a qualified dietitian would be worthwhile.

Common drugs used to treat IBD can also cause diarrhoea in some people. These include the 5-Aminosalicylates such as Olsalazine (Dipentum), Mesalazine (Salofalk or Mesasal) and Balsalazide (Colazide). It may be possible to change to a different formulation if this is indeed the cause of the diarrhoea. Your specialist will be able to advise. Iron supplements can also cause diarrhoea (or constipation) in people with IBD.

The use of antidiarrhoeal medication can be helpful such as Lomotil and Loperamide (Gastrostop). However it is important to ensure that any inflammation caused by Crohn's disease and ulcerative colitis is treated first.

Lai Wan
I
BD Clinical Nurse Specialist

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Question:
I have recently been diagnosed with inflammatory bowel disease. I do not feel like I am coping at all well as I have no one to talk to and feel very depressed. My partner tries to be supportive but does not understand how I am feeling. I do not want to tell my friends what is wrong with me as I am afraid they will not want to be my friends anymore. I feel very low and alone. I want to "pull myself together" but just can't.

Answer:
People generally experience a psychological adjustment when diagnosed with a chronic medical condition. Symptoms of anxiety and depression are common. People often feel a sense of loss and grief that everything is not functioning as well as it had previously. There are associated fears about long-term prognosis. When diagnosed with IBD people report distress about disruption to lifestyle (regular bowel movements, often with a sense of urgency, anxiety about feeling the need to be close to a toilet etc.), having to take prescription medication indefinitely (some medication can illicit nausea, mood swings and irritability), and sometimes having to live with a level of chronic pain. These are some of the main changes experienced in people diagnosed with inflammatory bowel disease.

Societal attitudes preclude people from openly discussing bowel problems. This usually compounds people's sense of isolation and willingness to disclose their condition to friends, family and work colleagues. Current statistics suggest one in ten Australians have a bowel condition requiring medication and regular monitoring by their doctor. If you are experiencing psychological distress about your condition and lifestyle adjustment there are specialist counsellors who have expertise in working with inflammatory bowel disease.

Jeremy Cass
Clinical Psychologist
Box Hill North, VIC

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Question:
I have Crohn's disease and have read that it is important to take calcium supplements when taking steroids to protect me from osteoporosis. Please can you advise me on how much calcium I should be taking and whether there is anything else I should be doing?

Answer:
Osteoporosis is characterised by compromised bone strength and is a common side effect of steroid therapy. The main problem with osteoporosis is the significantly increased risk of fractures.

There are many ways to decrease this risk. Adequate calcium intake is one of these. It is recommended that patients taking steroids maintain a calcium intake of 1000 to 1500mg per day. This can be done by including calcium rich foods in your diet, especially dairy products such as milk, cheese and yoghurt. In general, one will need at least 3 serves of dairy products per day to provide sufficient calcium. An example of a serve is 250mL of milk (approximately 285-353mg of calcium) or one tub of yoghurt (about 390mg of calcium). Your dietitian will be able to advise you further regarding the calcium content of various foods as well as low fat or lactose free alternatives. Even so, many patients find it difficult to maintain adequate calcium intake via diet alone. In such cases, supplementation with calcium tablets is used. There are many different brands of calcium supplementation available and you should therefore check with your specialist regarding your particular dosage.

Along with calcium intake, vitamin D intake is also important. The main food sources of vitamin D are fortified margarines, fortified milks, fatty fish and eggs. However, many patients are unable to attain an adequate level of vitamin D from dietary sources alone. Supplementation via vitamin D tablets is therefore often used. Another method of improving vitamin D levels is via casual sunlight exposure. This should occur before 10am and after 3pm for periods dependent on the latitude and time of year. However, given the risks of skin cancer, excessive sun exposure should be avoided. Your doctor will be able to advise you regarding what level of sunlight exposure is safe for you.

Participating in regular weight-bearing exercise (at least 30 minutes each day) will also decrease your fracture risk. Other simple measures include avoiding excess alcohol and stopping smoking. Being on the lowest effective dose of steroids is also useful. It is important, however, that any dose changes be made by your medical practitioner.

Finally, certain patients may be eligible for other therapies such as drugs called bisphosphonates. However, the potential benefits and risks of these other therapies should be discussed with your specialist.

Dr. Christopher Leung
Senior Medical Registrar
Box Hill Hospital, Vic

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