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About IBD

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Who gets IBD

It is estimated that about 85,000 Australians have inflammatory bowel disease (IBD), whether it be a diagnosis of Crohn’s disease, ulcerative colitis, or colitis in another form. IBD can occur at any age, but it is most commonly diagnosed for the first time in people between the ages of 15 and 35. It is equally as common in males and females, and is present in most populations across the world, to varying degrees.

New estimates show that by the year 2022, the number of people living with IBD in Australia will reach 100,000.

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What happens when I have IBD?

IBD is a chronic (continuing) condition that you’ll have for the rest of your life. While it can be controlled with treatment, there is no cure as yet. Unlike the symptoms of other chronic diseases, such as diabetes, which are present every day, inflammatory bowel disease symptoms can come and go, depending on whether or not there is inflammation in your intestines. When the intestines are inflamed, symptoms flare up and the condition is considered active. When the inflammation is less severe or even absent, symptoms might disappear altogether and the condition is considered to be in remission.

For some, the periods of remission can last for weeks, months, or even years. The usual pattern however is one of repeated flare-ups of symptoms over the course of a person’s lifetime. It is not possible to predict when a relapse might occur, even among those who have had the condition for a long time.

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Inflammatory bowel disease causes

At this stage, no one knows for certain what causes IBD. The best explanation that experts can provide is that several factors come together at the same time to set off a first episode of IBD.

Firstly, there is likely to be a genetic susceptibility, where one or more inherited genes makes a person more prone to developing IBD. Should that person then encounter an environmental trigger—possibly, but not necessarily, a virus, bacterium, or protein—the immune system gets switched on and begins the very normal process of defending the body against a foreign substance. This process is known as inflammation, and this is where things start to go off course.

In most people, the immune response gradually winds down once the invading foreign substance has been destroyed. In others, however, the immune system is unable to recognise or react to signals telling it to switch off, and the inflammation continues unabated. This ongoing inflammation eventually causes damage to the intestinal tract and sets off the first episode of IBD.

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Was the trigger something I ate or drank or picked up?

So far, no clear links have been established between IBD and any type of food or drink. Furthermore, IBD is not contagious so it is not possible to pick it up from someone else with the condition. It is also clear that IBD is not caused by stress or other psychological factors.

On the other hand, just as any other chronic illness, IBD causes physical stresses on the body which, in turn, can lead to emotional stress. This can make the symptoms worse for a time, and/or make dealing with the symptoms more difficult. But stress does not cause IBD to occur in the first place.

The role of food plays an important part in managing IBD, as there are specific foods recommended in an inflammatory bowel disease diet that are key to controlling your symptoms.

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Is there any link between smoking and Crohn’s disease?

It is believed that smoking increases the risk of developing Crohn’s disease and worsens the course of the disease, in that it increases the need for surgery and medications. Smoking can make the disease more active and prevent remission. After surgery for Crohn’s disease, for example, the condition tends to recur sooner, and often more severely, among smokers than non-smokers. If you are a smoker and have Crohn’s disease, it is important that you stop smoking immediately.

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Will my children have IBD?

IBD appears to run in families to a certain extent, suggesting that genetics plays a role in developing the condition. About 20–25% of those with IBD also have a first-degree relative (first cousin or closer) with either ulcerative colitis or Crohn’s disease, although current research shows that there is only a small chance that a person will pass on IBD down to his/her own children.

No specific pattern of genetic inheritance however has been identified. This means that even in families that have a history of IBD, there is no way to predict which, if any, other members of the family will develop the disease.

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Will my life ever be normal again?

While it might have come as a bit of a shock to discover that you have IBD, over time it won’t always occupy the top spot on your mind, and it won’t rule your life if you don’t let it.

If your symptoms are being managed and are under control, there is nothing that can stop you from having a normal life. There might be exceptions in the case of those with more severe disease, but these are exceptions, not the rule.

In terms of your daily routine, you’ll most likely need to make some concessions—such as taking medications regularly and exactly as prescribed (even when you’re feeling well), and visiting your healthcare team more regularly—but you’ll benefit in the long run by getting your condition under control.

It is also important to talk to those who need to know. Discussing your condition and its impact on your lifestyle is an important aspect of your medical review. It would also help to talk to your family, friends, teachers, and/or co-workers about your situation. Give them the opportunity to support you in any way they can.

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What does having IBD mean for my future?

There is no doubt that IBD is a serious medical condition. During flare-ups and when the disease is active, symptoms can be troublesome, distressing, and downright embarrassing. Most people with IBD will need to take medications on an ongoing basis, even during periods of remission, to keep the inflammation in check and prevent flare-ups. There might be times where you will need to be in hospital—for example, if you become severely dehydrated or develop a complication. At some point you might also have to face the prospect of surgery, either to treat the disease itself or for complications associated with your condition.

But the good news is that IBD is manageable: it will not necessarily take over your entire life, and the life expectancy of those with the disease is normal. With the current range of treatment options available, most people are able to lead full and productive lives, complete with family, career, leisure activities, and travel.

This resource will teach you how to manage your condition in the context of having a normal routine and living a normal life. Before we move on, though, we have to gain a basic understanding of IBD in general, Crohn’s disease, and ulcerative colitis.

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What exactly is IBD?

Inflammatory bowel disease (IBD) refers to a group of chronic inflammatory conditions that affect parts of the digestive tract, but most commonly involve the small and large intestines. The most common diseases are Crohn’s disease and ulcerative colitis.

Although the intestines are the major body organ affected by IBD, the condition is considered to be systemic—i.e., affecting the whole body—and can also cause inflammation in other parts of the body, such as the eyes, skin, joints, and liver.

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How is IBD treated?

There is no such thing as a typical case of IBD. The disease affects every person differently, depending on the actual location of the disease and the severity of the inflammation within the intestines. Some experience only occasional, mild symptoms, while others have frequent and severe flare-ups. Treatment programs are therefore tailored to meet the needs of each individual with IBD.

The major goals of treatment in IBD are:

  • to relieve symptoms
  • to achieve remission (i.e., absence of symptoms)
  • to maintain remission
  • to improve quality of life.

Medications are almost always the first-line treatment strategy for those with IBD. They work by reducing the inflammation and allowing the intestines to heal. Over time, some people will no longer respond to medications, while others might develop extensive and severe disease that cannot be controlled by medications alone. In these cases, surgery could be an option. For some, surgery might in fact be the best option. By providing long-term relief of symptoms and reducing or even eliminating the need for ongoing use of medications, surgery offers many people with IBD an opportunity to lead a healthier and more active lifestyle.

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My specialist talks a lot about the gastrointestinal tract. What is it?

Your specialist is talking about a part of your body that plays a major role in your disease, whether it’s Crohn’s disease or ulcerative colitis.

The gastrointestinal (GI) tract is a continuous hollow tube that extends from the mouth to the anus. Its main purpose is to break down (digest) food into nutrients and then absorb these nutrients in order to supply the body with energy for growth and repair. Food travels down the oesophagus into the stomach where it is partially digested and liquefied before being released into the small intestine. The small intestine has three segments: the duodenum, the jejunum and the ileum. The major breakdown of proteins, fats and carbohydrates takes place in the duodenum. Digestion is then completed in the jejunum and ileum. Here, foods and liquids are further broken down into their component parts: glucose from carbohydrates; amino acids from proteins; fatty acids and cholesterol from fats; vitamins; minerals; salts; and water. These nutrients are absorbed into the

bloodstream. Any food matter such as residue or fibre that cannot be digested and absorbed is turned into waste product.

From the ileum, the fluid waste moves into the colon. The main functions of the colon are to salvage energy from the residue and fibre by means of bacterial metabolism, and to reabsorb water and concentrate any leftover waste into solid matter (faeces). The faeces then moves into the rectum where it is expelled from the body through the anus.

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What’s the difference between ulcerative colitis and Crohn’s disease?

Although ulcerative colitis and Crohn’s disease share some similarities, they also differ in important ways.

Crohn’s Disease

Location: Any part of the digestive tract from the mouth to the anus

Pattern: There could be areas of normal intestine between areas of diseased intestine

Inflammation: Affects the entire thickness (i.e. all layers) of the intestinal wall

Ulcerative colitis

Location: Limited to the large intestine (colon)

Pattern: Usually begins at the rectum and extends up the colon in a continuous manner

Inflammation: Affects only the innermost lining (mucosa) of the colon

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I’ve heard of someone diagnosed with indeterminate colitis. What is it?

Sometimes, a patient might present with features of both diseases, making practically impossible to distinguish between ulcerative colitis and Crohn’s disease. In such cases, a diagnosis of indeterminate colitis will be given. In fact, at the initial inflammatory bowel disease diagnosis, 10–15% of patients will be diagnosed as having indeterminate colitis.

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Personal Story - Testimony

Before I was diagnosed with Crohn’s disease I believed that in time I would simply get better and that the pain would disappear. After I was diagnosed, I had to face the fact that I had a chronic condition that I would live with for the rest of my life. I was 14 years old at the time and, suddenly, it felt like my world was crumbling around me. Now, through the support of friends and family and the information provided by CCA, I feel that I can live a normal life.

It can get very frustrating; you have to change some aspects of your lifestyle. But it is possible to have this disease and also have a life

My diagnosis has brought our family closer. We are a much stronger unit now.

I’ve lived with Crohn’s disease for more than half of my life. At times it’s hard, but I have always had the attitude that you should control the disease and not let it control you.

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Figure 2

Differences between Crohn’s disease and ulcerative colitis

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