Guest Writer Harvey - Telling School

Me, Myself and My Immune System: A brief timeline of my love affair with Crohn’s Disease.

Harvey Hancock

Part TWO

Two days later. I am ready to go home from a two-week hospital stay where I learned I had Crohn's Disease, aged 10! I vow never to watch Scooby Doo as long as I live. I say thank you to the nurses who shoved thermometers in my mouth and pricked me with needles, give a hug to the special nurse called Sian who is very pretty and very friendly (I never see her again) and wobble my way back to the car. Two weeks in a hospital has taken its toll and I look forward to sleeping in my own bed, but things don’t go to plan. I stay feverish, with flannels all over my head to cool me down. I sleep fitfully and wake up shaking. I reluctantly agree to spend three more nights in the hospital.

Fast forward a month. I am on huge doses of medication and my face is swollen up from the steroids. I am at home and enjoying the last week of the summer the way any 10yr-old should – running back and forth from living room to toilet, sleeping with 3 fans in his room and not spending any time with friends(!). My only visitor is a teacher from school.

Mr Wallace, who is going to be my teacher for yr.6 comes along and asks me if I want to share the details of my diagnosis with the rest of the class when school starts in September. Kids can be cruel and I don’t want to regret anything, so I tell him I’ll see how I feel. I joke with Mr Wallace about how I could maybe say to the class that “every Friday evening, I turn into a big green monster” and he genuinely laughs, telling me that that is the exact kind of things that will make the children understand that I’m not to be feared, that I’m still the same Harvey. He leaves and I know that, with him as my teacher, I will be safe from the bullies.

 

Fast forward to the first day of school, and the moment of truth arrives. My friends have all asked about my fat face but I have declined to answer their queries. Whilst Sarah H talks about how she spent her summer dancing, I do some maths and work out that my 6 week summer holiday was split into 3 perfect parts – my holiday to Portugal, which was a write-off, my two weeks in hospital, which were a write-off, and my final two weeks of my holiday, also a write-off. As I look around the room, taking in the posters and noticeboards, the drawers to put our work in, and the bookcase full of new dictionaries, I realise that I am so, so relieved to be back around the children with whom I have grown up. Mr Wallace asks: “So, does anybody else want to share what they did with the summer holidays?”

I’m a confident child and, if I may say so, a pretty popular figure in the class, so I have no problems with public speaking. However, as I find my hand raising itself, almost automatically, I consider my ability to sail the impending storm if I do indeed choose to share my summertime misadventure. Mr Wallace doesn’t bat an eye-lid when he sees my hand in the air, a tiny fist with one finger pointing towards the sky, amongst 35 sets of hands that remain firmly in laps or fiddling with hair. “Harvey? How did you spend your summer?”

Many things happen at once. My hand falls into my lap. I question what I want to actually say. I actually put my hand up to say I went to Portugal, and to hide my new identity until the time was right. I see the faces of all the children who were bored stiff by Sarah’s ballroom dancing competition in the summer break. I look at Mr Wallace, willing me to do only that which leaves me feeling safe, understood and happy. In a moment of madness and sensing the silence in the room I say “I spent two weeks in hospital”.

Hair-fiddling stops and all eyes stare at me. Finally, an interesting story! Mr Wallace looks at me thoughtfully and, I will never forget this, he raises his eye-brows a bit and gives me a subtle, questioning nod. I reply in kind. He smiles. “Would you like to tell us why you were in hospital, Harvey, or would you like me to explain for you?”

I get stage fright and ask Mr Wallace to do it for me. I keep my head down, ashamed to be the centre of attention in such extraordinary fashion, so I don’t know what the other children are doing. But I listen. I listen hard, and Mr Wallace does a stellar job, explaining to everyone how I became very ill over summer but am now okay. He emphasises that I am not contagious or to be treated any differently to how I was before the summer. He asks if there are any questions. Simon V puts his hand up, sheepish but still noticeable. I dread his question. Mr Wallace suddenly becomes one of the greatest men I shall ever know by simply ignoring Simon’s hand and moving on. I breathe a sigh of relief and get on with the rest of my day. Nobody avoids me, but nobody asks me any questions; a perfect first day back.

Coming up in Part 3 - dealing with the difficult kids...

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