Introduction
If you have recently learned that your child has inflammatory bowel disease (IBD), you are probably feeling concerned and perhaps overwhelmed. But keep
in mind that your child is not alone – about 1.4 million people in the U.S. have IBD, and about 140,000 of them are under age 18. Although IBD is
a chronic disease, that doesn't mean that your child has to feel sick every day. There are many things you can do to help your child keep symptoms
under control. In fact, most people with IBD are healthy more often than they are sick. This newsletter will help you understand your child's
diagnosis and treatment, as well as the steps you can take to help your child manage the disease.
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How Does the Digestive System Work?
To understand IBD, it is often helpful to first understand how the digestive system works. When you eat, food moves from your mouth into your esophagus,
where it passes down into your stomach. There, it is mixed and diluted before it passes on to your small intestine (also called the small bowel),
where it is broken down and absorbed. Sections of the small intestine include the duodenum, jejunum, and ileum. From the small intestine, anything
unabsorbed moves into your large intestine (also called the colon), where water is absorbed. The remaining "stool" passes into your rectum and is
eliminated through your anus.
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What is IBD?
IBD is a general term used to describe a group of illnesses that cause inflammation of the digestive system. There is no such thing as a "typical patient"
– symptoms tend to vary from person to person. The most common symptoms are diarrhea (sometimes bloody and often with extreme urgency), stomach cramping
or pain, weight loss, dehydration, fatigue, loss of appetite, and nausea. Other extra–intestinal symptoms may include arthritis,
eye inflammation, skin rashes, and/or fever. IBD can be especially difficult to diagnose in children, as some children have very subtle gastrointestinal
symptoms but present with growth failure as the only sign of inflammation. IBD also tends to be unpredictable, with intermittent flare–ups
followed by periods of remission. It is not contagious and can be controlled with treatment, but there is no cure.
The two most common types of IBD are Crohn's disease (CD) and ulcerative colitis (UC). CD can occur anywhere along the digestive system, from the mouth
to the anus. It causes patches of inflammation, swelling, and ulcers, interspersed with healthy tissue. CD can penetrate through all of the layers
of the digestive tract tissue, making it difficult for the body to absorb nutrients from food. In contrast, UC occurs only in the large intestine
and always involves the rectum. It causes inflammation, swelling, and ulcers, but affects only the inner lining (mucosa) of the digestive tract.
UC makes it difficult for the body to reabsorb water into the bloodstream. For more details about CD and UC, refer to the "Clinical Course of IBD" newsletter.
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How is IBD Diagnosed?
There is no single test that can be used to definitively diagnose CD or UC, and a child with IBD may appear quite healthy. A physician will typically take a medical history and conduct a thorough physical examination. Typical tests may include:
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blood tests
Blood tests are used to check for anemia, inflammation, and altered gastrointestinal immunity.
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barium X–rays
Barium x–rays are used to identify areas of swelling, narrowing, or other signs of inflammation. Your child will need to fast overnight and skip
breakfast before swallowing a chalky liquid that coats the upper intestinal tract, making it visible on an x–ray.
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endoscopy/colonoscopy
Endoscopy involves inserting a lighted viewing tube through the mouth into the small intestine, whereas colonoscopy involves inserting a similar tube through
the anus into the large intestine. Both tests are used to check for inflammation. During a colonoscopy, the doctor may also biopsy the intestinal
lining, to identify any abnormal cell growth. Prior to endoscopy, your child will need to fast overnight and skip breakfast. For colonoscopy,
your child will be prescribed laxatives and a clear liquid diet prior to the procedure. Sedation is always administered for either test to make sure
your child does not experience pain and reduce the anxiety associated with undergoing these procedures.
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How is IBD Treated?
Medication
The primary purpose of treatment with medication is to control inflammation and reduce pain and other symptoms. The medications used for children are
the same as those used for adults, however dosages must be adjusted to each child's weight. It is also important to consider potential side effects and
compliance issues. Most IBD medications are taken orally; others are taken intravenously, as an enema, or as a suppository. The five major types
of IBD medication are:
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5–aminosalicylates
(e.g., sulfasalazine, mesalamine, balsalazide, and olsalazine)
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corticosteroids
(e.g., prednisone, entocort);
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immunomodulators
(e.g., azathioprine, 6–mercaptopurine, cyclosporine, and methotrexate);
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antibiotics
(metronidazole, ciprofloxacin); and
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biologic therapies
(e.g., infliximab, adalimumab ).
Note that children taking immunosuppressive medications should not receive live vaccinations (e.g., chicken pox, MMR, rotavirus, or oral polio).
For more information about IBD medication, refer to the "Treatment of IBD,"
"Staying on Medication," and
"Medication Side Effects" newsletters.
Nutrition
What your child eats cannot cause IBD, but it can affect symptoms during flare–ups. It often takes trial and error to figure out which foods are problematic. You may find that keeping a food diary can help track patterns. It also may be helpful to meet with a dietitian to discuss questions and
concerns. Keep in mind that many children do not need to make significant changes to their diet.
Some children with IBD are also lactose intolerant. This means that they do not have enough lactase, which is the enzyme that digests lactose (a sugar
found in milk and milk products). Typical symptoms are cramps and diarrhea following meals. Treatment commonly involves avoiding certain dairy foods
(again, often a matter of trial and error) or taking lactose–free milk products, soy milk, or lactase enzyme tablets before eating dairy foods.
Because IBD interrupts the digestive system and can interfere with the body's ability to absorb nutrients, your child may not grow as quickly as his peers.
Children with IBD typically catch up eventually, but puberty may be delayed. Your child may need supplemental nutrition to maintain normal growth
and development, especially if he is too sick to eat properly, if his digestive tract needs a rest, or if diarrhea is causing excessive nutrient
loss. There are three general categories of supplemental nutrition:
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nutritionally complete liquid diets
These are easier to digest than solid food. They provide calories, vitamins, and minerals,
and can be used alone or with regular food.
-
elemental diets
These consist of predigested carbohydrates, proteins, and fats.
They are typically used at night for a month or longer and can be taken orally or delivered
through a nasogastric or gastronomy tube.
-
total parenteral nutrition
This is delivered intravenously and can be administered at home.
For more information, refer to the "IBD and Nutrition" newsletter.
Surgery
If medication does not control your child's IBD symptoms, surgery may become necessary. The goals of surgery differ, depending on whether your child has CD or UC. For CD, surgery can help relieve the disease symptoms. For example, it can be used to repair infected areas or fistulas (opening from the intestine to other organs), to remove an obstruction and widen the intestine (strictureplasty), and/or to remove a diseased portion of the intestine
and join the two healthy ends together (resection).
For UC, surgery can cure the disease by removing all of the diseased tissue. This typically takes place in multiple stages, with weeks between stages to allow healing. First, most of the large intestine and the lining of the rectum are removed. (Over time, the small intestine will adapt to take over
the large intestine functions). Then, an opening (called an "ostomy") is created in the abdomen, to which the end of the remaining small intestine
is attached. Liquid waste moves through the small intestine into a small bag (often called an "appliance") attached to the skin with special adhesive.
Ostomy appliances can be worn discretely under clothing. Finally, during a later surgery, the lowest part of the remaining small intestine can
often be reattached to the anal opening (ileoanal pouch anastomosis), and the ostomy in the abdominal wall is closed.
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How Can I Help My Child Cope?
At School
If you have a school–aged child with IBD, it will bolster his confidence to know that a support system is in place at school. Be sure to notify his teacher and the school nurse. The nurse can help you inform and educate other school personnel. Remember to formulate a plan for medication administration,
urgent bathroom needs, and school absences. You may want to arrange to keep an extra pair of underwear in the nurse's office. Don't forget
to discuss any special needs regarding physical education and/or field trips with the appropriate teacher.
When Traveling
There is no reason that your child's IBD should limit your family's travel plans, as long as he is feeling well. All it takes is a little advance planning.
For example, make it a habit to always know where the closest bathroom is before the need is urgent. And carry an extra pair of underwear, just
in case. For more specific tips about traveling by car, traveling by plane, and avoiding travelers' diarrhea, refer to the "IBD and Your Lifestyle"
newsletter.
In the Hospital
Hospitals can be frightening places for children, but there are many things you can do to help your child feel more relaxed and comfortable. For a younger
child, try role–playing with a toy doctor's kit and read age–appropriate books about going to the hospital. For an older child, encourage
questions and participation in decision–making. No matter what the age of your child, be sure to pack comforting items from home, like
favorite pajamas and stuffed animals. Stay with your child as much as possible, encourage siblings to visit, and try to maintain family routines.
Be sure to acknowledge your child's fears and feelings, and answer questions in a truthful, developmentally appropriate manner.
In General
Children react to chronic illness in many different ways. Watch for signs of depression and anxiety, which may occur soon after diagnosis or some time
later. Remember that such reactions are a response to IBD and not its cause. You may find it helpful to meet with a mental health professional who
has experience working with children and chronic disease.
As a parent, you have the opportunity to significantly influence your child's ability to cope with IBD. It is in your child's best interest to gradually
foster independence in an age–appropriate way. For example, children with IBD can learn to become responsible for taking their medication, keeping
a food diary, and communicating with their physician. If you are positive and supportive, your child will learn to take his illness in stride
and focus on life beyond IBD.
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Summary
You will play a key role in helping your child learn to take charge of his disease. Flare–ups and surgery may be inevitable, but a positive attitude
and a handful of coping skills can go a long way toward facilitating an active, productive life. Improved treatment options are available each
year, and the past decade has seen significant advances toward finding a cure for IBD. Until then, you can keep your child as healthy as possible by making sure he takes his medication regularly, pays attention to his diet, has a support system in place at school, and is well prepared if surgery
becomes necessary.
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