Crohn's, colitis and IBD services at Sydney Children's Hospital, Randwick
Paediatric Gastroenterology: (02) 9382 1752
Fax: (02) 9382 1787
Sydney Children's Hospital, Randwick
Randwick NSW 2031
The Sydney Children's Hospital, Randwick (SCH) multidisciplinary Crohn's and Colitis Clinic (renamed IBD clinic) was established at SCH in 2001 in order to focus care for the many children with Crohn's Disease (CD) and Ulcerative Colitis (UC). The clinic was the first such paediatric facility in Australia and has led to numerous advances in the management and outcomes for children with IBD. Over the years since the Clinic began, around 40 children have been diagnosed with IBD each year at SCH; and children of all ages continue to be cared for and managed in the clinic.
What is Inflammatory Bowel Disease (IBD)?
Inflammatory Bowel Disease, known as IBD, is a term used to describe two different illnesses that involve inflammation in the bowel. These are called Crohn's Disease and Ulcerative Colitis. There are many things that are similar between the two, but there are also differences.
Crohn's disease (CD) can involve any part of the gastrointestinal tract, from the mouth to the bottom. The most common part to be involved in children is the lower end of the small bowel - the terminal ileum. CD usually involves all the layers of the bowel wall, from the inside to the outer layer. When looking at the bowel wall under the microscope, there are some features that can be common with UC, but there are also some findings that are unique. One of these is a finding called granuloma: these are clumps of particular inflammatory cells all joined together.
Ulcerative colitis (UC) involves the large bowel (colon). It can just be present in the lower parts (proctitis), parts of the large bowel, or even the whole of the large bowel. It is uncommon to have proctitis by itself in children. UC is less common than CD in children.
Inflammatory Bowel Disease Unclassified (IBDU): Sometimes people diagnosed with IBD may initially be termed to have "IBDU" if it is not obvious whether they have CD or UC at the time of diagnosis; over time it usually becomes clearer if they have CD or UC.
Key Features of IBD
- IBD tends to run in families.
- IBD is more common in some populations, such as Jewish people.
- Bacteria, genes and the immediate immune response in the bowel wall are all important factors in the development of IBD.
- Both Crohn's disease (CD) and Ulcerative Colitis (UC) can occur in children: Crohn's is more common.
- One of the common ages for IBD to begin is in adolescence.
- UC and CD are becoming increasingly frequent in Australians.
- IBD is not transmitted from person to person (like a common cold can be).
Causes, Diagnosis and Treatments
How is Inflammatory Bowel Disease (IBD) caused?
The precise cause of IBD has not yet been worked out.
It is clear however, that there are three important factors involved in the cause of IBD: genes, bacteria and immune system responses in the digestive tract. Doctors and scientists think that IBD occurs in people with a certain combination of genes, who have altered defences in the surface of the bowel, who respond differently to bacteria in the intestines, leading to uncontrolled inflammation.
Over the last few years, researchers have found some of the genes that are important in IBD. One of these is called CARD15: changes in this gene may be present in up to 30% of people with Crohn's disease (CD). This gene is not important in the development of Ulcerative Colitis (UC), and is not relevant in some parts of the world. For instance, it is not important in Japanese people with CD.
The CARD15 gene makes a protein that is important in the responses of the surface of the bowel to bacteria. Changes in the gene lead to abnormal responses from the surface of the bowel, which leads to inflammation. The other genes which seem to be important in CD also affect how the surface of the bowel responds to foreign materials.
At present tests for genes are not routinely available. Many researchers around the world are doing studies to work out more about the genes in IBD. Over time, we should understand more about these important parts to the cause of IBD.
Because of the importance of genes in the development of IBD, it is not surprising that IBD can run in families. In around 30% of people diagnosed with IBD, there is someone else in their family with IBD. Also, IBD is seen more commonly in twins.
- Bacteria and IBD
In health, the digestive tract is home to billions of bacteria. We live in harmony with these bacteria. Many of the bacteria have vital roles, such as breaking down food and destroying harmful waste products of food digestion.
For some time, it has been clear that the bacteria in the bowel play important roles in the development of IBD. Researchers have tried to see if people with IBD have had any particular infection; however, no specific bacteria or virus infection has been identified to-date. Groups from Europe and North America have shown that there are big differences between the patterns of bacteria in the digestive tract of people with IBD compared to people without IBD. The cells in the lining of the GI tract in healthy people recognise and interact with these bacteria. It has been suggested that living in very clean conditions, such as in Western society, changes the type of bacteria in your intestine and this may increase your likelihood of developing IBD. This is called the 'hygiene hypothesis', however this is yet to be proven as a definitive cause of IBD.
- Altered Body Defences
The surface of the bowel has many functions in defending the body from invasion. These include keeping GI cells held tightly together, production of mucus, secretion of numerous proteins and development of other responses. In the healthy body there is a harmony between the bacteria and the lining of the GI tract. If pathogenic (harmful) bacteria get into your intestine, the body's defences swing into action to clear the pathogenic bacteria as quickly as possible. Once the pathogenic bacteria are cleared, the body's defences then wind down to return the intestine back to its harmonious state. In IBD, the body's defences become active and don't wind down, even when there are no pathogenic bacteria present. It is this constant and uncontrolled activation of the body's defences that cause the symptoms of IBD.
Diagnosis of IBD
How is IBD diagnosed?
Working out if someone has IBD usually involves a number of steps. Usually not all of the standard tests will be performed on the same day and most can be done on an outpatient basis.
The very first step in working out a diagnosis of IBD involves your doctor taking a very thorough and detailed history of your complaint. You will be asked many questions about your current troubles (abdominal pain, bowel habits etc). Your doctor will also ask about your general health (eg growth, energy level, school attendance) and about the health of your family (especially if anyone else in the family has bowel problems, such as IBD).
- Physical Examination
After the history taking your doctor will perform a complete physical examination, checking out your body. This involves inspecting your skin, mouth and belly, feeling your tummy, listening to your tummy and checking many other parts of your body. During any examination your doctor will not be trying to hurt you: if anything is painful for you, please let them know.
- Blood and Stool Tests
The next step will include some blood and stool tests. The blood tests give the doctor some information about your overall health, as well as checking how your gut is functioning. Usual tests will measure your blood count (looking for anaemia, or low red blood count), iron levels (looking for low levels), proteins (looking for low albumin, one of the main proteins), kidney tests and liver tests. Blood tests will be done to measure several markers of inflammation: some of these names are the erythrocyte sedimentation rate (ESR) and the C-reactive protein (CRP) level. Other blood tests may be needed depending on how long you have been sick and your particular symptoms.
None of these tests will be altered in all people with IBD. Commonly in children with Crohn's, there may be a low blood count, low iron, low albumin, high platelet count, high ESR and high CRP. Other people can have just one or two changes present. However, for some children all these tests will be normal even when their IBD is active.
You will need to collect a stool sample. Culture of the stool will be requested to see if there are any infections (bad bugs) there: sometimes bowel infections can look just like IBD. The lab will also be asked to examine the stool sample under the microscope looking for blood cells (white cells), which can be another sign of inflammation of the bowel.
- Upper Gastrointestinal Endoscopy and Colonoscopy (Scope tests)
The next test you will need is usually the scope tests. These are very important to find out if someone does actually have IBD, to show the parts of the bowel involved and to work out if the IBD is Crohn's disease or ulcerative colitis.
The scope tests involve looking at your upper gut (called upper gastrointestinal endoscopy) and your lower bowel (called a colonoscopy). The scope is a long flexible tube with a bright light and a tiny camera on its tip that projects an image onto a screen. In the upper gastrointestinal endoscopy the tube is placed down your throat through the oesophagus (gullet), through the stomach and into the first part of the small bowel (called the duodenum). The colonoscopy involves examining the large bowel from your bottom up to the end of the small bowel (called the terminal ileum) by placing the scope into your bottom.
An endoscopy allows the lining of the gut to be looked at directly. There are some common changes that can be seen in IBD. Your doctor will be able to work out the severity of the inflammation and the areas involved and can tell you or your parents just after the scope what it looks like. During the scope test your doctor will take a number of small (few millimetres) samples (called biopsies) from the surface of the bowel wall by passing a small instrument through the scope. These biopsies are later examined in great detail under a microscope. As the samples need to be carefully prepared, it usually takes a few days before these results are available. The biopsies are really important to work out whether or not someone has IBD and also are needed to help work out whether it is Crohn's disease or ulcerative colitis.
You will be asleep for the scope tests. This will involve an anaesthetic and means that you will not be in any pain or discomfort. You will get medicine through a drip or with a special breathing mask to make you completely asleep, so you do not feel anything during the test. For the scope tests you will need to have an empty stomach, which means not eating for at least 6 hours beforehand. Also, so that the colonoscopy can be successful, the poo in your bowel needs to be washed out. This might be the most unpleasant part of the whole procedure for you. It means drinking a special liquid (a powerful laxative) followed by a lot of clear fluids, starting usually at midday on the day before the scope tests. This part of the preparation is very important so that your bowel is clean, giving your doctor a proper view of the bowel wall.
The scope tests take around an hour and take place in the Operating Theatre. One of your parents can be with you when you are going off to sleep, and can be with you again just after you wake up in the Recovery ward. Usually you will be in the hospital for most of a day, but not usually overnight.
- Imaging Studies of the Small Bowel
With the scope tests your doctor can see the first and last parts of the small bowel but they cannot see the middle parts. You will have to have a different test to look at this part of the gut.
MRI Scan to look at parts of the bowel will likely be ordered at some stage during their care in IBD clinic. Magnetic Resonance Imaging (MRI) scan also involves lying still in a noisy large machine after drinking a liquid that helps to distend the small bowel on the pictures. MRI scans use a powerful magnet and not radiation as they don't involve any x-rays. This type of test is being used more commonly in children.
In very special circumstances, your doctors may suggest that you need to have a Pill Camera Test (or capsule endoscopy). This is a new type of test which involves a small capsule which travels through the bowel. It is able to take pictures, mainly in the small bowel, and transmit the pictures back to a recorder. This type of test is being used more in people with suspected Crohn's disease and may become more common in the near future.
Treatments for IBD
At present there is no cure for IBD. The various treatments that are available help to control the symptoms and the inflammation of IBD.
The overall goal of treatment of IBD in children is to maintain control of the disease, whilst ensuring that the child has normal growth and development, and avoiding side effects. In children growth is one good marker of the success of treatment.
Therapies for IBD can be divided into two main groups (see table 1):
- Therapies that lead to remission (to get disease under control)
- Therapies that maintain remission (keep disease under control)
Some medicines are more useful in some types of IBD. For instance, some therapies are used only in Crohn's Disease (CD) but not in Ulcerative Colitis (UC). Generally, when choosing a type of treatment for a child the important considerations are to (1) begin with medications that cause fewer side-effects and move to stronger medications if necessary, (2) to take into account the pattern and location of disease (different medications may be needed for someone with CD in the stomach compared to someone with CD around the bottom.
Table 1: Some therapies commonly used for IBD in children and adolescents
Getting better (Induction of Remission)
- Exclusive Enteral nutrition (EEN)
- Amino Salicylic Acid (ASA)
- Infliximab / Adalimumab
Staying well (Maintenance of Remission)
- Supplementary Enteral nutrition
- Amino Salicylic Acid
- Azathioprine / 6-MP
- Infliximab / Adalimumab
Inflammatory Bowel Disease (IBD) in children and adolescents
Over the past decades IBD has become increasingly common around the world. Crohn's disease (CD), in particular, is now seen much more frequently. Initially these changes in the pattern of IBD were seen in "Western" countries, but more recently increased rates of IBD have also been seen in other countries.
As well as becoming more frequent, IBD is now occurring more commonly in younger children.
The most common ages for IBD to begin are in the second and third decades. In children, adolescence is the most common time when the symptoms of IBD can begin. However, IBD can begin at any age.
Children with IBD can have a wide range of symptoms before diagnosis. The most common symptoms in children with CD are abdominal pain, diarrhoea and weight loss. The most common symptoms in children diagnosed with Ulcerative Colitis (UC), however, are diarrhoea with blood.
Children can have a number of other symptoms before diagnosis. These include losing weight, not getting taller, abdominal pain, diarrhoea, bloody diarrhoea, mouth ulcers, rashes, sore joints, lethargy, anaemia, iron deficiency and others.
One of the important aspects of IBD in children and adolescents is the potential impact of the bowel problems upon growth, nutrition and pubertal development. Almost all children with CD have problems gaining weight or weight loss and more than half of children with UC also have these problems. Children with UC and CD can also have problems growing taller, and some may end up shorter than expected for their family. Also, because IBD commonly causes problems through adolescence, it may impact upon the onset and progression of puberty.
Exclusive Enteral Nutrition (EEN)
This therapy involves the use of special drinks (formulas) that are a little like milkshakes. The formula is a complete nutritional supplement that provides all of the energy, protein, vitamins and minerals that you would normally get from eating a well balanced diet. These drinks need to be taken as a complete diet for 6-8 weeks. This means that during this time, you will not be able to have your usual foods and drinks: you will only be able to drink the special formula and some water. Although this sounds difficult, as you start to feel better many children and adolescents find it easier to complete.
This approach is very helpful in Crohn's disease (CD), but is not as helpful in Ulcerative colitis (UC). Exclusive enteral nutrition is as effective as steroids in achieving control of CD, but leads to much more effective healing of the lining of the gut and avoids any side-effects related to steroids.
As well as anti-inflammatory effects, enteral nutrition also has benefits for nutrition and growth. This therapy tends to be more effective when used as the first treatment for CD: but it can still be very helpful in children that have had CD for some time. Enteral nutrition can also be used to help maintain control of CD - in this case it is used as a supplement along with a normal diet.
Children with IBD have multiple needs that vary considerably from age-to-age and person-to-person. One of the objectives of the IBD clinic and all the team members are to ensure that besides the medical needs of each child, aspects such as their nutrition and growth, education, and psychological functioning are also looked after. This team approach and care is not restricted to our patients but extends to the family of our patients as we recognise the diverse needs of families can also vary considerably.
The IBD Clinic includes health professionals of various disciplines, including medical, nursing, dietetic, social work, and psychology staff (See Staff Section). Each of these people has key roles in the complex aspects of the care for the children and adolescents with IBD.
The SCH IBD Clinic is situated in the Outpatient Department at SCH. The clinic is held on Wednesday afternoons from 2pm and alternates with Thursday mornings starting at 8.30am. At each clinic visit each patient will have their weight and height measured and will have a full medical review. Each patient will be seen by a doctor and may also be seen by other members of the team as needed, such as a dietitian, social worker or a psychologist. At each visit you will be given plans for the coming weeks or months and arrangements made for your next visit.
To make an appointment, please call Outpatients on (02) 9382 1470 or call the IBD Co-ordinator Rachel Messenger on (02) 9382 1967.
The IBD clinic team involves health professionals of various disciplines, including medical, nursing, dietetic, social work and psychology staff.
A/Prof Avi Lemberg
Dr Lemberg is one of the consultant Paediatric Gastroenterologists and Director of the clinic. He has wide interests in the management of children with Crohn's and Colitis. He has experience in the management of Crohn's and Colitis in North America and Australia and is committed to the provision of balanced care for children and young people with IBD.
Dr Nitin Gupta
Dr Gupta is one of the consultant Paediatric Gastroenterologists and joined the department in 2011 and maintains an interest in managing children with IBD with a multi-disciplinary approach. He has trained in Adelaide, Sydney and Brisbane to ensure a broad experience and approach to children with IBD.
Professor Andrew S Day
Professor Day established the clinic in 2001. He has extensive experience over many years in the care and management of children and young people with Crohn's and Colitis. Professor Day is a visiting consultant Paediatric Gastroenterologist at the clinic and attends at least second monthly.
Professor Day undertook his training in New Zealand and Canada, before taking up an appointment at Sydney Children's Hospital in 2000. Since 2009, Professor Day has been based in Christchurch (New Zealand), but continues to attend the IBD Clinic on a regular basis.
IBD Clinic Co-ordinator: Rachel Messenger
The IBD Nurse Co-ordinator provides a key contact point for the clinic team, and is the central coordinator of many clinic events. The nurse will be closely involved from the time of initial diagnosis and learning about the new diagnosis of IBD.
Rachel is a very experienced paediatric nurse who joined the IBD Clinic team in 2007. She has an extensive background in aspects of child health, gastroenterology and nutrition.
Ms Kylie Whitten and Ms Kate Dehlsen
The IBD Clinic has a senior Paediatric Dietitian who has extensive experience in paediatric nutrition. Our dietitian has specialised in the areas of gastroenterology and specifically Inflammatory Bowel Disease.
Social Work and Psychology
Ms Jessie Ballentine
The paediatric Social Worker works with children and families in both the community and paediatric health care settings. The Social worker brings to the position a range of experience, skills and an in-depth understanding of the psychosocial impact chronic illness has on the lives of patients and their families..
In addition to working to ensure excellence of the care and management of children with IBD, the IBD clinic professionals are also committed to research into IBD. The overall objective of these research endeavours is to improve treatments and health outcomes for patients with IBD and increase our understanding of the disease. These studies will lead to improved ways to manage IBD in children and also contribute to the global efforts of finding a cure for these conditions. The results of these research studies are reported back to the participants through the IBD clinic newsletter. In addition, the results are presented to the global medical and scientific community by publication in internationally regarded medical journals and through presentations at medical and scientific conferences.
Dr Steven Leach
Dr Leach is a post-doctoral scientist working with Prof Day and the gastroenterology research team. He has expertise in mucosal immunology and inflammation and is dedicated to studying how internal and external factors contribute to the development of IBD. Dr Leach has more than 40 publications in the area of IBD research.
SCH is a teaching hospital and has a strong affiliation with the University of NSW. Each year a number of research students are involved with the team. Both junior students (e.g. doing a short term project as part of their medical degree) and more senior students undertaking advanced degree programs (such as PhD degrees) participate in IBD research programs with the team
Sydney Children's Hospital IBD Research Group
The Research Group has numerous ongoing research activities related to IBD. These endeavours encompass both clinical and laboratory-based projects: many are complementary, aiming to examine problems from different perspectives. A common theme in these studies is the objective to lead to improvements in clinical care and management of IBD. This is achieved by applying research efforts to clinical problems and bringing the results of research studies back from "the bench to the bedside".
The overall objectives of the group are to develop better treatments for IBD, to improve care and management of children with IBD, to elucidate aspects of the pathogenesis of IBD, and to find a cure for this chronic condition. The outcomes arising from these studies have been presented at numerous national and international scientific conferences. Manuscripts detailing these results have been published in scientific and medical journals. If you have any questions about the group's studies, please contact Dr Avi Lemberg, Gastroenterology Department, SCH, (02) 9382 1752.
Ongoing areas of research and research questions of the group include the following:
- Interactions between bacteria & gut lining cells:
- How do normal bugs develop in the intestine?
- What happens to intestinal bugs before, during and after treatments?
- Are probiotics (healthy bacteria) beneficial in the treatment of IBD?
- What is the response of the intestinal lining cells to bacteria?
- Exclusive enteral nutrition for CD:
- What are the clinical and nutritional effects of Exclusive Enteral Nutrition (EEN)?
- Can these effects be replicated in vitro?
- What are the mechanisms of action of EEN in reducing inflammation?
- Looking for new markers to detect IBD (e.g. S100A12)
- What role do these protein markers have in the development of IBD?
- Treatments for IBD:
- How to use current treatments better?
- How to minimise the side-effects of treatments?
- What are the overall mechanisms of treatments (may provide clues for finding a cure)?
- Nutrition and bone health in children with IBD:
- What is the role of nutrition in IBD?
- How does IBD affect bones and bone health?
- How can we improve the quality of life of patients with IBD
One of the aims of the clinic team is to make sure that all young people diagnosed with Crohn's or Colitis cope well after their diagnosis. One way to help young people cope with IBD is to bring them together with other young people who have been diagnosed with IBD.
At regular times throughout each year there are Peer Support Meetings for young people with Crohn's or Colitis. These meetings consist of 6-10 young people and will be facilitated by one or two staff. They provide a chance to talk with each other about how things are going, to compare notes with others and to get support from each other.
In addition to these meetings, we commonly offer to match up a family or a young person with another young person or parent who might be going through similar aspects of their condition. We would always discuss this with yourself and the other person/family before suggesting contact is made.
Having a child or adolescent with Crohn's or Colitis can be quite stressful at times. Therefore, we also host regular meetings for parents to get together and share experiences and tips.
If you would like more information about these meetings or would like to be involved, please call Ms Rachel Messenger on (02) 9382 1967.
All donations intended to support the clinic or the research program are directed through a dedicated Gastroenterology Research Fund administered by the SCH Foundation. The SCH Foundation administers a number of specific funds, in addition to their general fundraising activities. Donors are placed within a Donor Recognition strategy by the foundation: those with donations over $500 in a year may be acknowledged directly in the Foundation Annual Report. Furthermore, all donations over $2 are tax-deductible (the Foundation is recognised by the Tax Office). The Foundation ensures that all donated moneys are administered appropriately and are used for the intended purposes.
In addition to donations, there are also various opportunities to support or sponsor specific aspects of the clinic, or specific components of the research program. If you are interested in making arrangements for sponsorship for one or more of these areas, it will be necessary to discuss the details with a member of the SCH Foundation.
If you have any questions about the possible ways to support the IBD clinic or research program, then please discuss with A/Prof Lemberg (02) 9382 1752 or the SCH Foundation (02) 93821188.
IBD Resources on the Web
- Specific websites for children and young people:
- National organization websites:
- Other Resources
- A/Prof Avi Lemberg - Tel: +61+2+9382-1752
- Rachel Messenger (IBD Nurse) - Tel: +61+2+9382-1967
- Gastroenterology Secretary - Tel: +61+2+9382-1752
- After hours (in an emergency) - call via the hospital operator - Tel: +61+2+9382-2111
- Dietitians - Tel: +61+2+9382-1021