Children with IBD (Parents Guide) Part 5 -

If you have a child with Inflammatory Bowel Disease, it is natural at times to feel isolated and worried about how you will cope, especially when your child is first diagnosed. This series of articles have been taken from the Crohn's and Colitis UK booklet IBD in Children: A Parent's Guide and has been produced to help you understand your child’s condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with Ulcerative Colitis or Crohn’s Disease. It has been written mainly for parents of children under 16, but we hope it may also be of some interest to parents of older children.

What is the best way to approach schools and teachers?

Most children with IBD attend ordinary schools, colleges and universities. School is a central part of your child’s life and they should be able to take part in most activities just like any other child.

“I always tried to get her to go to school despite tummy aches. I was pushing
to make life as normal as possible. After all, it’s a condition she has to live
with. If I treated her like an invalid she would all too readily fulfil that role.”
(Mum of a 9 year old with UC)

Although some children may have to miss school during relapses, chances are that most of the time they will be well enough to attend as normal. For a few children there may be a temptation for them to use their illness as an excuse to stay off school unnecessarily. The best policy is probably to expect your child to attend school unless he or she is definitely unwell. If you are worried that your child is falling behind because of time off school, talk to the class teacher about the possibility of home tuition or extra help in class.

Children vary in terms of how much they want other children at school to know about their IBD. Some may appreciate a teacher explaining their condition to the class, others would find this highly distressing. It is usually a good idea to discuss this with your child before you talk to their teachers.

In general, schools are better informed now about IBD than in the past, and most teachers and other school staff are accepting and helpful once they know what is involved in your child’s condition. We have an information sheet, Children and Young People with IBD: A guide for schools, which you may find useful when talking to your child’s school. This explains IBD symptoms and likely treatments, and includes suggestions of ways in which the school can help your child, for instance by allowing them leave the classroom to go to the toilet without asking, or to sit near the door in case of a toilet emergency. It also covers schools’ legal responsibilities towards children with disabilities and medical needs, which may apply to a child with severe IBD. You may wish to give your child’s teachers a copy of the information sheet.

“We took the information about IBD into school and asked for it to be shown

to everyone, from teachers to dinner ladies. Now the school fully understands

what he has to cope with, they are very helpful, and do their utmost to make

his school life happy.”

(Mum of a 7 year old with UC )

How can I help my child cope with stress at school?

Some parents may worry about their child being teased or picked on at school, perhaps about toilet ‘accidents’ or delayed physical development. Some children find it difficult to talk about this, even to parents. Signs that your child may be being bullied can include nervousness, temper tantrums, violence or sudden misbehaviour like playing truant. Talk to your child’s teacher if you are worried and make sure your child knows what to do.

Some children may find that stress can make their IBD worse, this could mean that the stress of exams could trigger a relapse of symptoms. You may need to offer extra support at this time, and ensure that they do not overdo their exam preparation. Children need to find a balance between doing sufficient study to perform well, and staying well. Make sure your child has time to rest and have fun, as well as working. It can be a good idea to check that the school is aware that exams can be a particular problem for children with a fluctuating and unpredictable illness like IBD.

Schools and colleges can often postpone internal exams or dates for handing in assignments, if necessary, and special arrangements can sometimes be made for GCSEs and A-levels. Children with IBD may be covered by the Equality Act 2010, under which the school has a responsibility to make reasonable adjustments to prevent them being placed at a disadvantage.

Coming up in Part 6 - More Information and Support

Children with IBD (Parent's Guide) Part 3 - Tests and Treatments

If you have a child with Inflammatory Bowel Disease, it is natural at times to feel isolated and worried about how you will cope, especially when your child is first diagnosed. This series of articles have been taken from the Crohn's and Colitis UK booklet IBD in Children: A Parent's Guide and has been produced to help you understand your child’s condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with Ulcerative Colitis or Crohn’s Disease. It has been written mainly for parents of children under 16, but we hope it may also be of some interest to parents of older children.

What tests may my child need?
If your GP suspects that your child has IBD, he or she will be referred for a range of tests, usually at a hospital paediatric (children’s) unit with a children’s specialist in intestinal diseases. This doctor is called a paediatric gastroenterologist. Blood tests are usually carried out first. These are done to see if there is any inflammation in the body and if your child is anaemic. Stool (poo) samples will also be tested to look for blood and to exclude infectious diarrhoea.

Most children then have an endoscopy (a camera test to look inside the bowel). This is done with an endoscope, a long flexible tube (about as thick as your little finger) with a light at the end, linked to a video system. In an upper gastrointestinal (GI) endoscopy (sometimes known as an OGD – oesophago-gastro duodenoscopy), the endoscope is passed through the mouth to look at the oesophagus, the stomach and the top part of the small intestine. In a colonoscopy, (an endoscopy of the large intestine), a similar tube is inserted through the anus (bottom) into the colon (large intestine) and into the lower part of the small bowel.

These tests allow the specialist endoscopist to get a clear look at the internal lining of the intestine and to take a biopsy (a small scraping of tissue) through the endoscope. The biopsy is then examined under a microscope and this helps with the diagnosis.

Your child will not be aware of what is happening during the endoscopy. In younger children endoscopies, including colonoscopies, are done under a general anaesthetic; in older children, as an alternative, they can be done under heavy sedation given into a vein in the arm. If your child is having a colonoscopy he or she will be asked to take a laxative to clear the bowel before the camera test, and many children find this the most uncomfortable part of the test. Your child may need to take this at home before coming in to the hospital, and it can be helpful to talk this through beforehand with the doctor or nursing staff, so you know just what to expect.

You will be asked to sign a consent form for an endoscopy. If you still have any worries and concerns, especially if you have not already talked about the tests with your doctor or specialist, do take this opportunity to ask questions. Many hospitals have an IBDor paediatric gastroenterology nurse specialist whom you can contact for help and support. You may find the hospital or centre has a booklet on endoscopies written especially for children and their parents.

Upper GI endoscopies and colonoscopies cannot tell your doctor about the section of the small intestine the endoscope cannot reach, so other tests may also be used. This is usually an MRI scan of the abdomen, but may be a barium meal test. Occasionally a capsule endoscopy is used. A barium meal and follow through test is a special x-ray which involves drinking a fluid (dye) which shows up the outline of the intestine. It is not painful but it does take a couple of hours for the dye to go through. Some children may have difficulty drinking the large volume of liquid needed.

If this happens, the nurse may have to pass a tube through the nose down to the stomach to help. Children having an MRI scan, which uses magnetic imaging to give a picture, will also be asked to drink a similar liquid before having the test.

In a capsule endoscopy, your child swallows a capsule about the size of a jelly bean, which sends back photographs to an external computer as it goes through the gut. Alternatively, the capsule can be placed in the bowel by an endoscope. As yet however, capsule endoscopies are not available in all hospitals, and would not be used for very young children, or children who may have strictures (narrow sections) in their intestine, as can happen with some types of Crohn’s Disease. Your child may have an ultrasound, which uses sound waves to create an image. Some centres offer CT scans (computed tomography). These combine x-rays and a special computer to create images of the inside of the body.

Except for the endoscopy, where your child may be admitted the day before the test, your child will usually be able to have these tests done as an out-patient, but each can take most of a day. It may then take a few days before the results of any biopsies are available. For more information about tests see our booklet Investigations for IBD.


What kinds of treatment are there?

Since IBD affects everyone differently, your specialist will suggest the best treatment plan for your child’s condition at that time. The aim of the treatment will be to make your child feel better, and then to keep their symptoms under control. There are several kinds of treatment for each condition, and these may be used one after another, or in combination at the same time.

Crohn’s Disease may be treated with dietary treatment (also known as nutritional therapy or enteral feeding), drugs, surgery, or a combination. In children with Crohn’s, nutritional treatment is often tried first as studies in children have shown that it is as effective as steroids (see 'What drugs are used in IBD?' below) and has fewer side effects. It usually involves taking a special liquid diet, instead of food, for a number of weeks. The majority of children respond very well to such nutritional treatment, and it can often mean that steroid use can be reduced or even avoided.Your child may then go on to long term medication to help keep their condition under control.

Ulcerative Colitis and IBDU/indeterminate colitis are more likely to be treated by drug therapy, although for some children surgery may be needed. Unlike Crohn’s, Ulcerative Colitis cannot be treated with a liquid diet, although supplementary nutritional drinks are occasionally recommended to provide extra energy (calories) for growth.


How does dietary treatment work?

Many children with Crohn’s Disease will be treated, at least initially, by being put on an exclusive liquid diet. This involves drinking a specially prepared liquid ‘food’, such as Modulen IBD or Elemental 028, instead of normal food, usually for a period of about 6-8 weeks. These products are easily digested and also provide all the nutrients necessary to replace lost weight and help your child grow properly. Once prescribed, these diet drinks should be obtainable at your local pharmacy. They usually come in powder form, to be made up into a drink with water. Most are available in several flavours and trial packs may be available. Some brands also come in ready-to-drink cartons.

The drinks should be spread out throughout the day. If your child has difficulty drinking a sufficient quantity, they may find the diet easier to take through a nasogastric feeding tube (a fine tube passed through the nose down into the stomach). However, it is usually worth trying to find a flavour or type of liquid food that your child is able to drink because most children prefer this to a tube. Your dietitian or IBD team should be able to help with this. Once in place, a nasogastric tube should not stop your child going to school, college or taking part in all their usual activities, although some children may feel self conscious about the tube and it may be worth talking to teachers in advance. The time that the actual feed is given can still be organised to suit your child’s daily routine, and some of it can be given overnight while your child is asleep.

Talk with your child before they start on nutritional treatment about what they would prefer to do during family meal times. Some may prefer to do something else rather than sit with the family, but it is important that this is their decision, and they do not feel they are being excluded from normal family life.

Most children soon begin to feel better once on the diet, although the high concentration of nutrients in the feed can sometimes cause nausea or a headache. This can be due to dehydration so make sure your child drinks enough water while on nutritional treatment. They can also have certain other drinks, but check with your doctor or dietitian first. After treatment, foods are gradually re-introduced, generally over several weeks. Your child’s IBD team will advise you on how to do this. As a parent, you may worry that it will be difficult for your child not to have food for this length of time. However, try to remain positive because this is usually a very effective treatment.For some children with Crohn’s Disease, supplemental nutritional treatment (taking a liquid diet as well as food) or another period of exclusive enteral feeding may be recommended from time to time, to improve growth and help keep the condition under control.


Is a special diet helpful at other times?

There is no evidence that other special foods or extra vitamins are helpful in children with IBD, nor that avoiding a specific food helps everyone. However, if you find that a particular food appears to upset your child, it is sensible to avoid it after consultation with your doctor or dietitian. For example, some children feel better if they avoid spicy food or drinking large amounts of milk. Your IBD team will give advice about a well balanced and nourishing varied diet. Occasionally, your doctor may prescribe vitamin or mineral supplements, such as vitamin D or iron, if the body stores are low.

Our booklet, Food and IBD, gives further information on how food affects IBD and suggestions for healthy eating with UC and Crohn’s.

What drugs are used for IBD?

The drugs used to treat IBD work by stopping the inflammation and reducing the chance of a relapse or flare-up. As the symptoms are relieved, so your child should feel much better. As with most drugs, there may be some unwanted side effects, but the medicines prescribed for your child will be used very carefully and in the smallest doses needed to give the desired result. Your IBD team will be monitoring your child’s health very closely and should be able to explain in more detail how the medication will work. Do not hesitate to ask your doctor any questions you may have about your child’s treatment. Older children may also find it helpful to talk their treatment through with their IBD team and find out what to expect and how the drugs may affect them.

There are four main types of drugs used for IBD in children, which may be given separately or in
combination.

• Aminosalicylates, such as sulphasalazine and mesalazine, are regularly given to treat mild UC and then longer term, to prevent flare-ups. They may need to be taken every day for several years even when your child seems well. You may worry about your child taking medication long-term, but it may help to keep things on an even keel, especially while your child is growing. When the lower part of the colon or the rectum is affected, aminosalicylate enemas or suppositories (medicine that can be inserted into the body through the anus) can be used.

• Corticosteroids, often called simply ‘steroids’, such as prednisolone and budesonide, are given to treat flare-ups and often act very quickly to control the discomfort. However, they can also have side effects such as a rapid weight gain and your child’s face may get chubbier. They can also increase their appetite to make them very hungry. In teenagers, acne can get worse. Some children may become irritable or moody, or revert to earlier behaviours such as temper tantrums while on steroids. They may also have trouble sleeping. Steroids are also known to affect children’s growth, so the number of times your child needs steroids and
the total dose are usually kept to a minimum, and these side effects usually go as the drug dose is reduced. Steroid enemas or suppositories may be used – these cause few side effects as less of the drug is absorbed into the body. Corticosteroids are not the same as anabolic steroids which are sometimes used by athletes.

• Immunosuppressants, such as azathioprine, and mercaptopurine may be introduced immediately or following a relapse. They may also be used for children who have become steroid dependent (have a flare-up as soon as they come off steroids). Immunosuppressants are slow acting and can take 6-12 weeks before being fully effective. These drugs reduce inflammation by suppressing or dampening down the immune system, and at the beginning of treatment may cause nausea, vomiting and loss of appetite. It is important that your child has regular blood checks while on this type of medication as it can also suppress the production of blood cells in the bone marrow. If this happens, the drug can be stopped or the dose can be adjusted. Other immunosuppressants such as methotrexate, ciclosporin, or tacrolimus may be used if your child has not responded to azathioprine or mercaptopurine.

• Biologics, such as infliximab and adalimumab, are newer drugs which work with the immune system to block the chemicals that cause ongoing inflammation. These drugs may be used if your child has severe Crohn’s Disease or UC that is not responding to other treatments. Infliximab is given by an intravenous infusion (through a drip in the arm) in hospital, while adalimumab can be injected at home.

We have a general booklet on drug treatment: Drugs Used in IBD, which you may find helpful, and there are also individual drug information sheets about commonly used immunosuppressants and biologics.

Important points about drug treatment

Taking steroids can affect the production of cortisol, a natural hormone important in stressful situations, and so steroid treatment should be reduced gradually, rather than stopped abruptly, to give the body time to adjust. If your child is on steroids anyone treating them for another illness or in an emergency, for example following an accident, will need to know about their steroid treatment. One way to ensure this is for your child to carry a ‘Steroid Card’ (available from pharmacists) or wear an emergency bracelet, such as those obtainable from Medic Alert.

Steroids and immunosuppressants can reduce your child’s ability to fight infections. Some infectious diseases, such as chicken pox, can be serious, so talk with your specialist about what to do if your child comes into contact with someone with such an infection. Immunosuppressants can also increase sensitivity to sunlight and make it even more important for your child to use high factor sunscreen or sunblock.

Your child must not receive certain live vaccines while on steroids or immunosuppressants. This includes the MMR (measles, mumps, and rubella), yellow fever and BCG (tuberculosis) vaccines. For polio, an ‘inactive’ vaccine can be given instead of the live one. It is best to check with your IBD team before your child has any vaccination. However, they will probably recommend that your child has a regular flu injection.

Whatever IBD medication your child is prescribed, do check with their doctor before you give them any other medicines, as there could be an interaction with the IBD treatment. This includes over the counter medicines and any herbal, complementary or alternative treatments.

When is surgery necessary?

Surgery for IBD is sometimes necessary for some children. Once done it usually greatly improves the child’s general well-being. Surgery should only happen after careful discussion with you and your child. With Crohn’s Disease the intestine may become very thick which can result in a stricture (narrowing of the space inside the intestine). This can cause pain, particularly when eating as it can be difficult for food to pass through. Surgery may be needed to remove the affected area, or, where possible, dilate (stretch) it.

Some children with IBD are prone to fistulae. A fistula is an abnormal channel connecting the bowel and the skin around the anus, or to another organ or part of the bowel. If a fistula does not close with drug treatment, then surgery may be required.

In some children with severe IBD it may be necessary to carry out an ileostomy. In this operation the colon is removed and a small opening or stoma is made in the surface of the abdomen. Waste is then collected in a stoma bag attached to the outside of the abdomen. For some children with UC, the stoma may be temporary and, in a second follow-on operation the surgeon can make an internal pouch from the end of the small intestine. With a pouch, an external bag is no longer needed. These types of operation often have a good outcome in children, meaning that they feel a lot better after surgery.

Whichever operation is being suggested, your paediatric gastroenterologist will refer you to a surgeon to explain what is going to happen. Most centres also have a stoma team who specialise in helping patients with ileostomies, and should be able to meet with you beforehand and talk through your concerns.

For more information see our information sheets Surgery for Ulcerative Colitis and Surgery for Crohn’s Disease.

Is there a risk of bowel cancer?

Some people with IBD do have an increased risk of developing bowel cancer, but for many there is little or no greater risk than in the general population. If someone has Ulcerative Colitis the risk is increased when the disease is severe, affects most of the large bowel, and they have had UC for more than 8-10 years. This means that bowel cancer is less likely to develop in childhood. There is also an increased risk for someone with Crohn’s Disease affecting all or most of the colon, a condition which is sometimes called Crohn’s Colitis. If your child has Crohn’s only in the small intestine, there may be an increased risk of small intestine (small bowel) cancer. However, even in the general population small bowel cancer is rare.

Regular colonoscopies are usually offered to look for early warning signs of cancer in people who are at greater risk. However, most children will not need screening until they are an adult. We have an information sheet, Bowel Cancer and IBD, which gives more details.

Coming up in Part 4 - Practical Tips

Children with IBD (Parent's Guide) Part 1 - What is IBD?

In the UK, one person in 250 has Crohn’s Disease or Ulcerative Colitis, conditions collectively known as Inflammatory Bowel Disease or IBD. These illnesses can start in childhood and around a quarter of all people diagnosed with IBD are children or adolescents.

If you have a child with Inflammatory Bowel Disease, it is natural at times to feel isolated and worried about how you will cope, especially when your child is first diagnosed. It may help to bear in mind that:

• while your situation is unique, you are not alone - there are thousands of other parents in a similar situation with similar experiences and concerns;
• nowadays there is a good chance that these conditions can be kept under control. The aim of medical treatment is to reduce and limit the number of times your child’s bowel is inflamed, so that he or she can get on with everyday life with as little disruption as possible.

This series of articles is taken from the Crohn's and Colitis UK booklet IBD in Children: A Parent's Guide and has been produced to help you understand your child’s condition and the treatments that may be used. It also looks at some of the more general concerns that you may have as a parent, and includes suggestions based on the experiences of other parents of children with Ulcerative Colitis or Crohn’s Disease. It has been written mainly for parents of children under 16, but we hope it may also be of some interest to parents of older children.

What is Inflammatory Bowel Disease?

Inflammatory Bowel Disease is the name given to a group of conditions, of which Crohn’s Disease and Ulcerative Colitis (UC) are the best known. It is not always possible to distinguish between the two, so some people may be given a diagnosis of indeterminate colitis or IBD unclassified (IBDU).

You cannot ‘catch’ IBD – it is not infectious or contagious. IBD is not the same as IBS (Irritable Bowel Syndrome). IBS has some similar symptoms to IBD, but is a different condition and is treated differently. To understand IBD it can help to know how the digestive system works. As shown in this diagram, the gastrointestinal (digestive) tract is like a long tube that starts at the mouth and ends at the anus.

When we swallow food it goes down the oesophagus into the stomach. Here the gastric (stomach) juices break the food down to a porridge-like consistency. This partially digested food moves through into the small intestine where most of the goodness is absorbed. What’s left then passes into the colon (large intestine). The colon absorbs the water and the waste becomes faeces (stools or ‘poo’). These collect in the rectum and pass out of the body through the anus.

Crohn’s Disease and Ulcerative Colitis can both cause inflammation of the digestive system. Inflammation is the body’s reaction to injury or irritation and can cause redness, swelling and pain.

In Crohn’s Disease, this inflammation can be anywhere from mouth to anus – it is most common in the small intestine or colon. The areas of inflammation are often patchy, with sections of normal gut in between. Both the lining and the deeper layers of the bowel wall may be affected.

Ulcerative Colitis involves the colon (large intestine) and rectum. In this disease the inner lining of the colon becomes inflamed and develops many tiny ulcers on its surface.

What are the main symptoms?

Crohn’s Disease and Ulcerative Colitis are chronic, or ongoing, conditions. This means that they are lifelong diseases which may give trouble over a number of years. However, your child may have long periods of good health (remission) alternating with times when the symptoms are more active (relapses or ‘flare-ups’).

The early symptoms of Crohn’s Disease are often very vague and can vary from person to person, so the diagnosis may not be clear at first. With children, symptoms often include stomach or tummy ache, and diarrhoea, which may be blood stained. Crohn’s can also cause nausea, vomiting and lack of energy. Many children with Crohn’s have weight loss and may grow more slowly than other children. Ulcerative Colitis can also cause abdominal pain, and as with Crohn’s, your child may feel tired and lethargic. The main symptom, however, tends to be persistent diarrhoea, which can often be quite severe, and usually contains blood and mucus. Occasionally UC may cause constipation.

What causes IBD?

In spite of much research, the exact cause of IBD remains uncertain. We do know that IBD is not infectious and is not a form of cancer. There is no conclusive evidence that stress can cause IBD, although some people with IBD have found that stressful situations seem to trigger a flare-up of their symptoms.

Many researchers now believe that IBD is caused by a combination of factors: the genes a person has inherited which may predispose them to develop IBD, and then an abnormal reaction of the immune system (the body’s protection system) to certain bacteria in the intestines, possibly triggered by something in the environment. Viruses, bacteria, diet and stress have all been suggested as environmental triggers, but there is no definite evidence that any one of these factors is responsible.

Research is continuing, especially into genetic (inherited) factors. Both UC and Crohn’s are known to occur more often in some families than in others, and in recent years progress has been made in identifying the genes that may be involved in making people more likely to develop IBD. Parents with IBD are slightly more likely to have a child with IBD. For every 100 people with UC, about 2 of their children might be expected to develop IBD at some time in their lives. For every 100 people with Crohn’s, about 5 of their children might be expected to develop IBD.

There is also a similar risk that if one child in a family has IBD, a sibling (brother or sister) may also develop UC or Crohn’s Disease. However, we still cannot predict exactly how IBD is passed on from one generation to another. Nothing you have done or not done will have caused your child to have IBD.

Can other parts of the body be affected?

Some children with IBD develop associated conditions in other parts of the body. The most common one is arthritis (inflammation of the joints). This type of arthritis usually responds well to most of the anti-inflammatory drugs given to treat IBD, and so the arthritis often improves as the IBD improves.

Some children may develop mouth ulcers and thickening of the lips, particularly if they have Crohn’s Disease. Directly applied creams or gels, available from your doctor, can usually help heal up the ulcers if they do not improve with the IBD treatment. Mouthwashes may also be helpful. Skin rashes are quite common, and sometimes come on at the start of a flare-up. One type of rash, erythema nodosum can cause small painful red patches down the shins. This too should disappear with the treatment of the IBD.

IBD can occasionally affect the liver. Your doctor will be screening for liver problems such as ongoing inflammation through routine blood tests.

In a small number of children, the eyes may become inflamed. You should speak to an eye specialist or your child’s doctor if your child has sore, red orinflamed eyes, as occasionally more serious eye problems can occur.

Will my child get better?

Currently, IBD cannot be cured, in other words taken away completely, but a lot can be done to minimise its effects and help your child live a normal life. Once treatment is started many of your child’s symptoms should improve within a few weeks. Although there may then be periods of relapse when your child could be ill with IBD, there will probably be periods of remission when their symptoms more or less disappear. Most children with IBD can continue to go to school and take part in sports and other interests. Many then go on to university or employment, and eventually start a family of their own.

Coming up in Part 2 - Tests and Treatments