IBD is often considered to be a ‘young person’s disease’ because its onset is typically between the ages of 15 and 35. It can however occur at any age; from infants right through to seniors. It is rare in children under the age of 2 years, and becomes more common from about 10 years of age.
For the most part, IBD in children and adolescents is the same as it is in adults. That is, the disease runs a similar course of remission and relapse, and the medications (in appropriately adjusted dosages) and the types of surgery used to treat the disease are similar. The symptoms of IBD also tend to be similar between children and adults, with some exceptions being that abdominal symptoms are often more severe in children and that symptoms not involving the gastrointestinal tract, such as failure to grow as expected, might appear before the onset of intestinal symptoms.
But there are also some important differences between children and adults with IBD.
One major difference concerns the fact that the children’s bodies are still growing and developing. A condition such as IBD—which can impair the absorption of essential nutrients from food and, at the same time, affect the desire to eat—tends to have a more profound impact on growing bodies.
Another important difference is that children’s minds are also growing and developing. Younger children in particular are less equipped emotionally to deal with the impact of IBD on their lives. There are also several issues quite specific to children and adolescents with IBD with regard to schooling, participation in various activities, and general socialisation within and outside the family environment. Their parents might themselves be going through a grieving process which, in turn, will affect their child’s ability with the illness.
If your child is diagnosed with IBD, it is important that you as a parent also get some support if you need help with coping, as sometimes parents have more emotional needs and stresses in these situations. When younger children get a chronic illness such as IBD, they might not know exactly what they are missing. Parents can help their children cope, but can also make them feel worse if they themselves are not coping. So if you are a parent whose child has IBD, you need to look after your own mental health so you can help your child better.
- Are there any early signs of IBD in children?
- Do children outgrow IBD?
- What is meant by the term ‘growth failure’?
- Exactly how does IBD affect growth in children?
- Can surgery treat growth failure in children with IBD?
- Does IBD affect the onset of puberty? Will my child be normal?
- Is there a special diet for children with IBD?
- What if my child is too sick to eat?
- What can I do to help my child cope with IBD?
- How much information should I give my child about his/her condition?
- What can I do if my child becomes depressed?
- Personal Story -"Our Champ Charli"
- Are there any specific issues for teenagers with IBD?
- Will IBD have an impact on my child’s ability to attend school regularly or participate in sport?
- Should other people be made aware of my child’s condition?
- What are the chances that my other children will develop IBD?
- Personal Story -"A Tough Teen Takes on IBD"
- Will my child have a normal life?
Are there any early signs of IBD in children?
The diagnosis of ulcerative colitis in children tends to be relatively straightforward. A typical early sign is progressive loosening of the stool, which often contains mucus and blood and which may or may not be accompanied by abdominal pain. Diarrhoea can develop slowly or begin quite suddenly.
The signs of Crohn’s disease in children can be quite vague at first, confusing the diagnosis. Common early signs are abdominal pain and weight loss or failure to gain weight, which can appear long before a diagnosis is made. In other children, loose stools and cramps-like abdominal pain might appear at the same time. The pain tends to be felt just above the navel on the right side of the abdomen and often occurs just after a meal. Pain, loss of appetite, and weight loss are also common symptoms of Crohn’s disease in children, which might also come with diarrhoea. The child might also feel tired and lacking in energy as a consequence of blood loss and iron deficiency.
Children will often try to avoid eating in order to prevent symptoms; this can worsen their fatigue. Sometimes, the unexplained abdominal pain, loss of appetite, and weight loss might be incorrectly attributed to allergies to certain foods, a fear of attending school, or other psychological problems such as anorexia nervosa (an eating disorder).
In other children, early signs of Crohn’s disease might be sores in and around the anal area such as fissures, fistulae, abscesses, skin tags, etc. Less often, a child might complain of joint pain and fever long before any gastrointestinal symptoms develop. In rare instances, a child might be treated for arthritis for years before any abdominal symptoms appear. Sometimes, an early sign of Crohn’s disease in a child is a failure to grow for months or even years before any other signs of the condition are present.
Do children outgrow IBD?
The short answer is no. Both ulcerative colitis and Crohn’s disease are considered to be chronic conditions that more or less last for a lifetime. But many people, including children, experience long symptom-free periods because of spontaneous remission or a favourable response to the medications used to treat their condition. Also, many people who have had surgery to treat their condition experience a better quality of life when they no longer have to put up with painful and distressing symptoms or take medications to control their disease.
What is meant by the term ‘growth failure’?
Growth failure is a medical term used to describe a growth rate that is below the appropriate growth velocity (speed) for age. Important clues to growth failure includes a child noticing that he or she is shorter than other children in the same class. Parents might notice that the size of a child’s shoe or clothing has remained the same for a longer period of time than expected, or that the child is not gaining weight, or is perhaps even losing weight.
Since infancy, your child would have had a growth chart which a health nurse uses to monitor a child’s growth rate compared with the average growth rate of similar-aged children, as well as with their genetic potential based on the height of their parents. If growth failure is suspected in your child, or is indicated in the growth chart, x-rays can be used to confirm a delay in bone development.
There is no evidence to suggest that levels of growth hormone are deficient in children with IBD. Although growth might be delayed in children and adolescents with IBD, if their IBD is treated well and they go into remission, they usually catch up in time, sometimes even into their late teens and early 20s.
Exactly how does IBD affect growth in children?
There are a few different answers to explain the effects of IBD on growth in children.
Active disease can affect growth
A major factor affecting growth in children with IBD is disease activity: the more severe the disease and the longer it has been active, the more growth will be delayed. About 15% to 40% of children whose onset of IBD was before puberty will experience growth failure. The most effective means of reducing the risk of growth failure is to have the inflammation of IBD under control for as much of the time as possible.
Inadequate nutrition can affect growth
The diarrhoea associated with IBD can cause a loss of dietary fats and water and, if severe, can lead to rapid weight loss and dehydration. It is important to be constantly alert because children can become so accustomed to loose stools that they do not even think of them as diarrhoea anymore. Among children with Crohn’s disease of the small intestine, the absorption of essential nutrients from food can also be impaired. The main reason however that children with IBD do not maintain normal growth is that they do not eat as much food as their bodies require. Children with IBD often do not feel hungry or will avoid eating in order to prevent symptoms such as abdominal pain, cramping and diarrhoea. A lack of adequate nutrition (and caloric intake) is thought to be the single-biggest reason for growth failure in children and adolescents with IBD. Children with IBD can require 50% more calories per day than a child of a similar age without the condition.
Treatment with corticosteroids can affect growth
Corticosteroids—especially when taken in high doses or for long periods of time—can reduce bone mass and delays in growth and development. These effects can be minimised by taking corticosteroids only every second day and by gradually tapering the dose downwards once the inflammation is brought under control. As discussed above, however, disease activity and inadequate caloric intake are thought to be the major reasons for growth failure in children. Treatment with corticosteroids often results in improved growth because the disease is brought under control and the child is able to eat better.
Can surgery treat growth failure in children with IBD?
Growth failure on its own can sometimes be an indication for surgery in children with IBD, although this is rare and would be considered only if puberty had been delayed for several years. Because Crohn’s disease often recurs in people who have had surgery, the decision to operate on children with this condition is rarely made because of growth failure alone. More often, surgery is performed because of poor response to medical treatment and/or the development of complications such as strictures (blockages) or fistulae (abnormal connections between two sections of bowel or adjacent organs or skin), combined with a failure to grow. After surgery, some children with growth failure resume normal growth while others do not. The reason for this difference is not known and it could be that some children are still not consuming adequate levels of nutrients for growth.
Does IBD affect the onset of puberty? Will my child be normal?
When IBD occurs in children before the onset of puberty, there could be a delay in sexual development. It is estimated that up to one-third of children with Crohn’s disease will develop more slowly than their peers. The main reason for this delay is the chronic inflammatory disease delaying puberty in the same way it leads to growth failure. Inadequate nutrition because the child tends to eat less to avoid symptoms such as pain, cramping, and diarrhoea can also play a role and in some cases. There could also be an impaired absorption of nutrients in the small intestine. Although puberty might start later in some children, however, eventually they will catch up if the condition is bought under control.
Similarly, children who need to take corticosteroids to control the inflammation of IBD might experience a delay in the onset of puberty compared with their peers. This is usually managed effectively by taking the medication on alternate days and by using the lowest dose possible to control the inflammation. Although puberty could be delayed in children taking corticosteroids, eventually they will catch up and mature normally. In addition, if the steroids are effectively controlling IBD, they could actually help rather than hinder the onset of puberty.
Is there a special diet for children with IBD?
A normal well-balanced diet containing a variety of items from all major food groups is the ideal diet for children with IBD. In many cases though this is easier said than done. Children with active IBD often do not feel hungry and/or will avoid eating in order to prevent symptoms such as abdominal pain, cramping, and diarrhoea. Children with IBD who also have lactose intolerance can develop uncomfortable symptoms such as bloating, abdominal cramps, and increased diarrhoea when they drink milk or eat dairy products. This can worsen the problem of under-nutrition, as dairy products are a major source of nutrition and calories in children’s diets. Likewise, raw foods such as salads, uncooked vegetables, or fruits can further irritate an already sensitive gastrointestinal tract and worsen the symptoms of IBD.
The main priority for children with IBD is making sure they eat enough food each day to meet their caloric requirements for growth and activity. So simply getting them to eat—which means practically anything they want to eat (within reason)—is a good place to start. This can include foods such as burgers, chips, pizza etc., although these should be considered as treats, with healthier options making up the largest part of their diet just as they do for the rest of the family. It is important that food does not become the major battleground whereby the child vents his/her anger about their condition (by refusing to eat, etc.), but that other avenues are available to work through the issues.
Many children who have difficulty eating enough food or have complications such as narrowing of the intestines (strictures) could benefit from taking liquid supplements, especially of protein and calcium, to increase their caloric intake. These drinks (somewhat like smoothies) are nutritionally complete and come in many different brands and flavours that can be taken alone or as a supplement to regular food. In Europe and the UK, children with Crohn’s disease can have liquid supplements for six weeks without other food instead of corticosteroids in order to induce remission. Studies are under way in Australia to see if this method is useful for our children and to allow us to better understand how it works.
A not-uncommon issue with liquid nutritional supplements is that a child has developed an aversion to food and might initially resist taking them. A technique used to work around this problem is to administer a special formula via continuous infusion overnight. While the child is sleeping, the nutritional supplement is pumped slowly through a nasogastric tube, which is a narrow tube passed through the nose, down the oesophagus, and into the stomach. This ensures that the child is getting sufficient nutrients and calories to meet his or her daily requirements. It is even possible to learn how to use this technique at home. Oftentimes, once the first few days have passed and the child has become accustomed to being nourished, many find that they are able to drink enough of the supplement without a need for the nasogastric tube.
Some children with active IBD might become deficient in vitamins and minerals such as vitamin B12, vitamin C, vitamin D, folic acid, iron, calcium, magnesium, and zinc. Most often, these deficiencies can be detected and corrected by the child’s clinical team. Vitamins and minerals are contained in liquid supplements and are available in concentrated forms as liquids, tablets, or capsules.
If the disease is currently in remission, then children can eat a normal balanced diet along with the rest of the family.
What if my child is too sick to eat?
Children who are very sick can be administered exclusive enteral nutrition (EEN) via a nasogastric tube. EEN is a complete liquid diet that can also be taken orally if the child feels well enough.
In rare situations, such as gut failure, nutrients can be administered via total parenteral nutrition (TPN), which is a semi-permanent tube.
In some cases, TPN might be used to rest the bowel and to improve the child’s nutritional status and overall health. TPN can also be used to prepare a child for surgery, with many children experiencing shorter recovery periods as a result. Because their caloric intake is dramatically increased, many children begin to grow while they are being fed intravenously.
What can I do to help my child cope with IBD?
No parent likes to see their child sick. It is completely normal to feel frustrated at times when you cannot simply make their pain and symptoms go away. The best way to help your child cope with IBD is by your own acceptance of their condition. You will need to come to terms with it realistically. IBD is not preventable or avoidable. It was not anything that you or your child did or did not do that brought about the onset of IBD, so there is nothing to be gained by blaming yourself or feeling guilty. Once you accept that your child has IBD, you can move on towards identifying ways in which you can provide the right kind of support and ensuring that your lives are as normal as possible.
Try to learn as much about the disease as you can. Ask questions of your child’s clinical team, and encourage your child to do the same. CCA provides a wealth of information about IBD and can offer support to you and your child when needed. The Internet is also a valuable source of information about newer methods of IBD management and about where IBD research is heading. The presence of a chronic disease such as IBD within the family environment can have a huge impact on family dynamics:
- Parents will need to spend more time with a sick child than with other children. This can lead to feelings of resentment and jealousy, and cause constant friction between the children. If at all possible, try to avoid letting IBD become the focus of attention in your family life and make sure that your other children are receiving their fair share of your time, attention, and love.
- Some parents become overly protective of their child with IBD. A child’s physical and emotional wellbeing, however, is best developed by encouraging him or her to participate in age-appropriate activities, just as you would do for your other children. And as soon as your child is old enough, it would be a good idea to foster independence by encouraging him or her to take responsibility for some aspects of the condition, such as taking medications or calling the IBD clinic when necessary. Many children thrive on responsibility and learn valuable life skills in the process. It is a difficult balancing act between helping children manage their condition while also fostering their development and independence. When symptoms are less severe or the disease is in remission, a conscious effort needs to be made to treat them like an average child of their age.
- If a child develops IBD at an age where the quest for independence is already a major issue (e.g., during adolescence), it can become a huge source of tension between parent and child. Parents might become alarmed when the child is in denial about the condition and refuses treatment, or is eating poorly and losing weight. This can lead to an ongoing battle of wills with seemingly no simple solution. These are all genuine concerns that need to be managed quickly and appropriately, usually with intervention by the child’s clinical team. Psychological support for the child and/or family might also be appropriate in order for everyone to cope better with the challenges and to move forward.
Open two-way communication is the best means of identifying issues early and preventing them from escalating into major dramas. Children should be made to feel comfortable about voicing any fears or concerns they have about their disease and its treatment. Allowing pre-teens and adolescents the opportunity to take responsibility (within reason) for their own condition can give them a sense of control and help prevent tension from arising between parent and child. If non-resolvable issues remain despite you and your child doing the best you can, family therapy is a valuable option to consider. An expert in family dynamics can provide much-needed support to your entire family.
Above all, your knowledge about the disease and its symptoms, a calm and level-headed approach to dealing with them, together with your love and support, can have a reassuring effect on your child and on the rest of the family.
How much information should I give my child about his/her condition?
This will depend on their age, their IQ, and how well they are. As they get better and older, you need to start preparing them for becoming responsible for their IBD themselves, just as they need to look after their own education and eventually support themselves. So talk about it, and continually assess when you need to step back and have them take greater responsibility. As a child’s comprehension increases with age, they tend to hear just what they are ready to hear. Over time, your child will likely indicate how much information he or she is ready to hear about his or her condition.
Therefore, encourage your child to ask questions and discuss any concerns with you and with the clinical team. Answer questions honestly and frankly, as children are quick to pick up on half-truths. Stick to the facts but gauge the level of detail according to the child’s age and maturity. Older children and adolescents have a right to know how IBD will affect their bodies and their lives. Armed with accurate information, they will be in a better position to, for example, understand the importance of taking medications, or recognise signs that complications might be developing. Younger children will also appreciate hearing the facts but might not need to know everything just yet. For instance, they do not need to learn about the full range of possible complications of IBD, many of which will never occur.
What can I do if my child becomes depressed?
It is not uncommon for children with IBD to have episodes of depression. Especially after a period of relative good health, a relapse can make them suddenly realise that their condition is not simply going to go away. Treatment with corticosteroids can also cause mood changes which exacerbate the problem. You can help the situation by reassuring your child that the setback is likely to be temporary and by making sure that your child receives prompt medical attention if necessary. Some children will benefit from counselling by a therapist familiar with IBD.
Experience has shown that depression is usually related to disease activity, treatment, or nutritional deficiencies. Once the symptoms lessen and the child feels well enough to resume normal activities, the depression usually disappears. Again, psychological therapy might be helpful for the child, parents, and the family as a whole.
Personal Story -"Our Champ Charli"
Charli is our beautiful, courageous five-year-old daughter. She was born happy and healthy, but when she was 2 1⁄2, our lives changed forever. This is when Charli started having bloody stools after taking an antibiotic for a small infection on her finger. The paediatrician thought it was just a bacterial infection, and we went on a round of countless emergency room visits without getting a definite diagnosis.
My husband and I were confused, exhausted and frightened. This went on for several months until we changed paediatricians, knowing we could not just give in to the ‘stomach-ache bug’ diagnosis we kept getting.
Our new paediatrician, I believe, saved Charli’s life. He took one look at her and immediately sent her in for several tests, one of which brought up a red flag for ulcerative colitis.
By this time, Charli had endured almost five months of pain and exhaustion and after a colonoscopy, ulcerative colitis was finally confirmed. And while we were upset to get this scary diagnosis, we were also relieved to finally know what was wrong with Charli.
Charli began prednisone and then went on sulfasalazine as a maintenance drug. All was fine and life went back to normal until Charli was 4 1⁄2. Charli’s specialists were surprised that her colitis symptoms had not returned as it is most often very severe in children. We started doubting the accuracy of the diagnosis, and wondered if she was taking drugs that could be adversely affecting her small body, particularly her liver, for no reason at all. Her specialist agreed this could be possible, so we decided to take Charli off the drugs. The worst I believed could happen was that the symptoms would come back and we would start the drugs again. Well, they did come back less than two weeks after we stopped treatment, but this time prednisone did not work to get her back into remission. We were devastated.
Charli started going downhill, and within a few months, she was very unwell.
Finally, I asked Charli’s specialist what he thinks would give her the best childhood: drugs or an ileostomy. He point-blank chose ileostomy, and we agreed. We understood that the more potent drug therapies could keep symptoms at bay, but surgery was inevitable down the line anyway, because of an increased risk of cancer.
Finally, surgery day arrived. We were ready and so was Charli.
The surgery appeared to go well, although the surgeon did tell us that it looked like she had ‘indeterminate colitis,’ meaning that it could be Crohn’s disease. This was upsetting as it would mean she was not ‘cured’ as such and could continue to have problems, and a J pouch would not be possible with Crohn’s.
Charli had many complications from surgery, and it seemed at times as though every thing that could go wrong went wrong. But her little body battled everything and she was so brave throughout that she was an inspiration to us all. In the end, we simply felt that as long as Charli was getting better and was home with us, we felt could deal with anything.
Months after she came home from hospital, Charli has continued to do fantastically well.
She started kinder and although she has an ileostomy, she is no different from the other kids. She is extremely active—swims throughout summer, jumps on the trampoline, and dances up a storm. As for her parents, well, we are still recovering!
We are hoping Charli doesn’t get Crohn’s disease so that she can get a J pouch in about five years. In the meantime, she has a fantastic medical team comprising her gastro specialist, her surgeon, her stomal therapist, her fantastic school, and her teacher’s aide, all of whom have made this journey a little easier for us through their compassion, understanding, and professionalism. We thank them from the bottom of our hearts.
We are now filled with hope for the future and feel an immense pride in the strength and resilience of our amazing little girl, who continues to show a bravery beyond belief and who lives each day to the fullest, just as a five-year-old should!
Are there any specific issues for teenagers with IBD?
Yes! And you really do need to specifically mention issues around sex, drugs, alcohol, and other serious risk issues. Just because they have IBD does not mean they will not be experimenting in those areas, and if they are on immunosuppressing drugs, the consequences for them might be dire. This can be the case with sexually transmitted diseases such as herpes, etc. There can also be issues with medication safety and binge drinking. So parents of older kids need to think and talk about these issues, especially since many paediatricians feel uncomfortable doing so.
Generally speaking, since adolescence is a time when physical appearance and acceptance by peers are particularly important, there are a number of issues quite specific to this age group. Young people often feel angry, depressed, and frustrated by repeated flare-ups of disease which might require them to have more rest and which interfere with their social activities. The self-consciousness of being ‘different’ can also lead to feelings of isolation. They might resent the bodily changes caused by the disease, or by its treatment with high doses of corticosteroids. Sometimes young people might avoid visits to the doctor, fail to report symptoms, or refuse to take their medications in an effort to deny that they have a medical condition. In adolescents with delayed growth or onset of puberty, their short stature and lack of visible signs of sexual development can be a constant reminder that they have IBD. Of all of the complications of IBD, these seem to cause the most distress. Added to this are very real concerns—whether voiced openly or not—about the possible need for surgery and the implications that this might have on their future lives.
Wherever possible, adolescents with IBD should be encouraged to participate in normal everyday activities. To gain a sense of control over their lives, they should also be encouraged to take responsibility for managing their condition. A good relationship between a young person and his or her clinical team can be vital to achieving independence. To prevent unnecessary conflict, avoid dietary restrictions that are overly strict. Regular monitoring of growth, nutritional parameters, and bone density should reassure the young person and his or her parents that caloric intake is adequate.
Quite often, a team-based approach involving a social worker, psychiatrist, or other therapist is necessary to supporting young people with IBD. Peer-support groups are also a useful means for adolescents to share their concerns and frustrations with like-minded people. Support is also available for the parents of adolescents with IBD to help them deal with stressful issues specific to this age group, such as lack of sleep, overuse of electronic devices, alcohol, and school/work matters.
Will IBD have an impact on my child’s ability to attend school regularly or participate in sport?
The main aim of modern IBD management is for the condition not to restrict the children’s or adults’ lives. Children and adolescents with IBD should therefore be as active as they feel like being, or are capable of being. If they feel well enough, there is no reason for them not to go to school or participate in sport. On the other hand, if they are not able to fully participate as they want, you need to talk to them and find out why. It could be due to unsuspected ongoing disease activity (which a doctor would need to assess), certain psychological difficulties due to chronic disease, or peer pressure.
Children with chronic diseases such as IBD tend to learn to accept a certain amount of pain and discomfort as normal and just get on with it, yet they are the first to realise when it all becomes too much. Children should always be encouraged to go to school, even during disease flare-ups, although sometimes it is best to respect their desire to stay home. Forcing a child to go to school or allowing too many days at home can both lead to tension within the family. A sound knowledge of your child’s condition and good communication can help you determine whether or not your child is capable of attending school on any given day. When young people are responding positively, they tend to enjoy the company of their peers as a distraction from their illness, so missing school can be a wake-up call for parents and the clinical team to take a more proactive or different approach to the management of the child’s condition.
Clearly, there are special considerations for children with IBD when attending school. It is best to advise teachers and school administrators (including the school nurse) in advance about your child’s condition. This will help explain absences from school, the need to take medications during school hours, any specific dietary requirements they might have, and the occasional inability to participate in certain activities. There might also be instances where your child would need extra support in terms of making up classwork or sitting exams outside of scheduled times. Establishing a good rapport with your child’s teachers and school administrators can also help in implementing practical methods for dealing with the symptoms of IBD especially during disease flare-ups. For example, your child should always have immediate and unrestricted access to the nearest toilet facilities, including staff-only facilities if need be.
Some strenuous sports, e.g., soccer, rugby, etc. might cause additional fatigue because the child has become very unfit, his or her iron stores are low, or the caloric intake is inadequate. In these cases, it might be best to correct the deficiencies and try lower-impact sports such as swimming or biking to build up fitness before swapping over to a more preferred but strenuous activity. Each child is different and you will probably need to try a few different activities to find those that best suit your child.
Should other people be made aware of my child’s condition?
Whether or not other people should know about your child’s condition is best left up to the child to decide. Since IBD is such a difficult condition to explain, and because other children can often be insensitive about such things, your child might want to protect himself or herself by not telling anyone about IBD. For the most part, you should respect their wishes. Teachers and school administrators, however, should be made aware of your child’s condition for reasons explained above.
Encourage your child to let close friends know about their IBD. This will help explain why they might not feel up to going to school some days or might need to rush off to the toilet in a great big hurry. Good friends can be accepting and highly protective if they understand what is going on, even if it is explained to them in the simplest of terms. They can also provide much-needed support during difficult times and prevent your child from feeling isolated.
What are the chances that my other children will develop IBD?
IBD is considered to be a familial rather than a genetic condition, meaning that there is no definite pattern of inheritance. If you already have a child with IBD, it is possible—but not inevitable—for your other children to also develop Crohn’s disease or ulcerative colitis. Studies have shown that between 10% and 35% of those with IBD have a near relative with either of the two conditions. This percentage increases if more distant relatives are included. But even when IBD clusters in families, there is no way of predicting whether or not another child will develop the condition. For this reason, people who have IBD in the family are not discouraged from having more children.
Personal Story -"A Tough Teen Takes on IBD"
My 15-year-old son Tomas started getting blood in the stool when he was around 9 or 10. He might have been having symptoms before that, but we thought it was just a stomach bug. We took him in for tests when he started getting blood in his stool, but there were no markers in his stool so the tests didn’t show anything. It was like that for around six months, and then it got a lot worse. That’s when he went for a colonoscopy. The doctors saw then that he had IBD but didn’t know if it was colitis or Crohn’s. After about a year, they were able to definitely say it was Crohn’s disease.
He was put on medication, including steroids for quite a while, and he had moon-face on his tenth birthday. But Tomas is very resilient, and he doesn’t give up. He just kept dealing with it and went to school and played soccer—which he loves—and did normal things.
Once we knew he had Crohn’s disease, we told his teacher and the principal about it. We didn’t really make a big deal out of it, and it became obvious only when he was put on an enteral diet and had to take his shake at school, during morning tea and lunchtime.
Remission and Surgery
Tomas had Infliximab infusions every eight weeks, and eventually went into remission. Eventually, he built up a resistance and it just wasn’t working for him anymore. His medications were adjusted, and a colonoscopy showed that things had gotten very severe. Eventually, he had surgery to remove his colon (large intestine).
Through it all, his mental health and ability to deal with this disease have been his saving grace. Going through everything has been really tough for him. He puts on a brave face and he doesn’t make a fuss, and even our family and friends had no real idea what he was actually going through, despite knowing he had Crohn’s disease. But even when it was getting very bad for him, he remained open to strategies that could make things better. Instead of going, ‘I hate this,’ he would think: ‘How do I deal with this?’ And at school, he’d focus on things like: ‘How do I get to the toilet quickly?’ or ‘How do I keep up with the work?’ He’s always focused on making the situation work.
Another example: last year, during a severe flare-up, he wanted to go on a high school ski trip, and we were thinking, ‘How would that work? What’s he going to do?’, especially without us there as support. We debated whether he should go or not. He wanted to go and didn’t want to miss out, so we asked him how he planned to deal with potential issues. In the end, we worked out strategies and a plan to help him deal with whatever happens. It wasn’t easy because he’s a teenager and he’s conscious of all these things, but it was his decision to go so he knew he had to make it work.
Now that he’s had his operation, his goal after he recovers is to go play soccer again.
That’s the good thing about Tomas. He’d rather go and do stuff than miss out, so if there’s something he knows he needs to do, even if doesn’t want to do it, he will at least try. He looks for how things might work, and not every child does that. His level of maturity is very high for his age, and I think that comes from having to deal with IBD from a very young age into the teen years.
Even the way he carries himself in public is very casual and mature. During the ski trip, for example, they stayed in dorms and he had to go to the toilet a lot. I asked him what he did when the others started asking questions, and he said he just shrugged it off. And they get their cue from that; they didn’t make a big deal of it because he didn’t.
‘Don’t Let the Disease Stop You’
One thing that’s helped us is being open and talking to people we trust, who can then give us, especially Tomas, support through understanding. After all, how can others help you or your child if they don’t know or understand what’s happening? Tomas has gone through enough to know he can deal with things, but it helps him enormously to know he’s got the understanding and support of everybody around him, including at school, which in turn builds his confidence.
Our basic philosophy is: never let the disease stop you from doing anything. You can work around things and come up with a solution. It might not be ideal, but it can still be a good strategy. This way, if something potentially traumatic happens, the child will realise that it’s not the end of the world.
It’s very important for parents to mentally prepare their children for dealing with IBD. Children should learn that IBD can range in severity over time, and that there’s a cycle of remission and active disease. If you are a parent, do not underestimate your child’s ability to learn and adapt, and focus on building up your child’s confidence and resilience in dealing with the ups and downs of this lifelong disease. But most of all, work with your child to develop strategies for coping with the rough times and enjoying the good times.
Will my child have a normal life?
Most people with IBD have a normal life expectancy and enjoy a full and long life, with a rewarding mix of family, career, and social activities. There is no doubt that the diagnosis of a chronic disease such as IBD will come as a shock to a child and the family. But while some children will experience a more serious course of illness, others will have only mild symptoms. There is no need to automatically assume that your child’s condition will be the worst. With the help of treatment, including medications, nutritional therapy, and surgery where indicated, most children with IBD can lead normal lives. Their expectations for their future—including career, relationships and family—should be the same as for anyone else.
Most importantly, when they are feeling well enough, children with IBD should be encouraged to just be normal: go to school, participate in activities and sport, socialise with friends so they are not isolated from friends and other family members. Children are adaptable and, for the most part, highly positive. Your love, support, and encouragement will go a long way in ensuring that their lives are as normal as possible and do not revolve around IBD.