Inflammatory Bowel Disease

A. Symptoms
B. Diagnosis
C. Medications
D. Growth
E. Diet
F. Surgery
G. Coping
H. Research
I. More Information
J. Appointments

The Division of Pediatric Gastroenterology/ Hepatology/ Nutrition at Riley Hospital for Children has extensive experience in the diagnosis and treatment of Inflammatory Bowel Disease in Children. We have listed some Frequently Asked Questions, which you may click on to view our answers.

What is Inflammatory Bowel Disease?

Inflammatory bowel disease refers to two diseases which affect the gastrointestinal tract (which includes the stomach, small intestine, and large intestine): Crohn's disease and ulcerative colitis. Crohn's disease and ulcerative colitis are two illnesses characterized by immune cells causing damage (inflammation) to the lining of the stomach or intestines. As many as 25-40% of patients develop symptoms during childhood and adolescence.

How are Crohn's Disease and Ulcerative Colitis different?

In Crohn's disease, any area of the digestive system, from the mouth to the anus, may be affected. In ulcerative colitis, only the large intestine (colon) is involved. Treatment of both diseases is geared toward decreasing the injury to the intestine and promoting growth. Because ulcerative colitis and Crohn's disease affect different areas of the gastrointestinal tract, there are some minor differences in therapy based on the location of the patient's disease.

In a very small minority of patients, the patient may clearly have inflammatory bowel disease, but we are unable to determine if it due to Crohn's disease or ulcerative colitis. These patients are given the diagnosis of indeterminate colitis. In many cases of indeterminate colitis, we are later able to determine if it is Crohn's disease or Ulcerative Colitis.

What causes Inflammatory Bowel Disease?

The cause of Inflammatory Bowel Disease (IBD) is still unknown. There is likely an interaction between a person's genetic makeup and their environment which triggers the disease process.

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What are the symptoms of Inflammatory Bowel Disease?

The symptoms of Inflammatory Bowel Disease may be non-specific, and some patients may experience a significant delay before the diagnosis is made. We work with our patients and families to proceed rapidly with testing in any child we suspect has Inflammatory Bowel Disease. The following list contains the most common symptoms of Inflammatory Bowel Disease:

  • Abdominal pain
  • Diarrhea
  • Blood in stool
  • Weight loss
  • Poor growth
  • Delayed puberty
  • Fatigue
  • Poor appetite
  • Joint pains
  • Fever
  • Vomiting

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How is Inflammatory Bowel Disease diagnosed?

We use a variety of tests to establish the diagnosis of Crohn's disease or Ulcerative Colitis. Not all of these tests are obtained in every patient.

Blood Tests:

  • CBC (Complete Blood count)- measures red and white blood cells, and platelet count
  • ESR (Erythrocyte Sedimentation Rate)- a marker of inflammation in the body
  • CRP (C-Reactive Protein)- a marker of inflammation in the body
  • Chemistry Panel (measures liver and kidney function, nutritional status)
  • Inflammatory Bowel Disease Antibody Panel- looks for specific antibodies (proteins) in the blood that may support a diagnosis of Crohn's Disease or Ulcerative Colitis

Stool Tests:

  • Hemoccult - detects blood in the stool that cannot be seen
  • Culture - detects a bacterial infection of the intestine
  • Clostridium difficile (C. diff) - detects specific bacteria in the colon which can cause diarrhea

Endoscopy:

  • All children suspected to have inflammatory bowel disease will need a test called Upper GI endoscopy and colonoscopy. While your child is asleep under the care of an anesthesiologist, a long lighted tube containing a camera allows the GI physician to see the lining of the intestine and take biopsy samples to help determine the areas that are inflamed. The Upper GI endoscopy examines the esophagus (swallowing tube), stomach, and upper small intestine. A colonoscopy examines the end of the small intestine and the entire large intestine. Your child will feel no pain or discomfort during these procedures. For more information on endoscopy, click on the following link: Riley Hospital for Children Endoscopy Information

X-rays:

  • Small bowel barium X-ray - Your child will be asked to drink a small amount of barium, and several x-rays will be done to follow the barium as it passes through the small intestine. This study looks for disease in the small intestine which cannot be seen with endoscopy.
  • Ultrasound, CT scan, MRI - These are special X-rays to look inside your child to look for Inflammatory Bowel Disease and problems with other organs (liver, pancreas, gall bladder, kidneys). These tests should not be painful to your child. An IV may be required for a CT scan or MRI.

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What medicines are used to treat Inflammatory Bowel Disease?

A variety of medications are available to treat children with Inflammatory Bowel Disease. You and your doctor will determine which of the following medications are best for your child. The following information discusses the most commonly used medicines for Inflammatory Bowel Disease, although we certainly use other medications as needed in specific patients.

Corticosteroids

Corticosteroids, commonly referred to as steroids, have been the mainstay of the initial treatment of Inflammatory Bowel Disease for decades. Prednisone is the most common steroid we prescribe for Inflammatory Bowel Disease. Steroids act to suppress the immune cells which have been damaging the intestine. They act quickly to decrease symptoms such as abdominal cramping and diarrhea. Because of their side effects, though, we only use steroids for short periods of time. These side effects may include weight gain, swelling of the face, acne, changes in blood sugar, and changes in blood pressure.

5-Aminosalicylates

These medications, which are similar to aspirin, act to coat the inside of the intestine and directly reduce the inflamed lining of the intestine. There are several different types of 5-aminosalicylates, and one of these medicines may be selected based upon the location of your child's disease. They are tolerated very well and can be used for very long periods of time. We use a variety of 5-Aminosalicylates, including:

  • Sulfasalazine
  • Mesalamine (Pentasa®, Asacol®)
  • Balsalazide (Colazal®)

Immunomodulators

These medications act to suppress immune cells which have been damaging the intestine. Because they do not act quickly, we usually start these medications as your child is weaning off steroids. These medications are very effective in preventing the symptoms of Inflammatory Bowel Disease from returning after your child feels better. They are tolerated well and can be used for long periods of time. We use a variety of immunomodulators, including:

  • Azathioprine (Imuran®, Azasan®)
  • 6-Mercaptopurine (Purinethol®)
  • Methotrexate

Infliximab

This medication, also known as Remicade®, is given through an IV for patients with difficult-to-treat Inflammatory Bowel Disease. Infliximab is also used for patients who have fistulas, or abnormal connections between the intestines and the skin or other structures inside the body. Most patients who receive infliximab get an infusion of the medication through an IV every two months.

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What about my child's growth?

Children with Inflammatory Bowel Disease frequently lose weight and stop getting taller before they are diagnosed. We believe growth is a critical outcome in treating pediatric patients with Inflammatory Bowel Disease. We tailor our treatment with medications to help children regain lost weight and begin growing taller. However, many children require more intense nutritional therapy to improve their growth. At each clinic appointment, we will carefully measure your child's height and weight. We work carefully with our dieticians to find the most appropriate nutrition plan for our patients with Inflammatory Bowel Disease.

Oral Nutritional Supplements

Patients who have Inflammatory Bowel Disease frequently get pain or cramping when they eat, or feel full more quickly after eating only a small amount of food. Supplements like Pediasure®, Boost®, or Ensure® provide excellent nutrition in addition to a regular diet. Modulen® was designed specifically for patients with Inflammatory Bowel Disease. Any of these can be taken once or more daily with meals or as a snack.

Calcium and Vitamin D

Inflammatory Bowel Disease can lead to premature thinning of the bones. This can be worsened by steroids. It is critical that patients with Inflammatory Bowel Disease receive an adequate amount (above what a normal child would require) of Calcium and Vitamin D. Your physician will recommend a specific amount of Calcium and Vitamin D based upon the age of your child. Each 8 ounce glass of milk contains 300 mg of Calcium. Some children may require a Calcium supplement such as Tums®, Viactiv®, or Caltrate®.

Parenteral Nutrition

Parenteral nutrition is sugar, fat, and protein which are given through an IV. This is only rarely required in children with severe Inflammatory Bowel Disease who are unable to take enough nutrition by eating and drinking or have had severe weight loss prior to their diagnosis. If parenteral nutrition is required, your physician will carefully manage the ingredients in the parenteral nutrition by following several blood tests.

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Should my child be on a special diet?

There are many different opinions about the role of special diets in the management of Inflammatory Bowel Disease.  We believe each patient should discuss their diet with their physician.  Some physicians advocate a low-residue diet, which can be viewed at the link below.  This low-residue diet may be most important when your child is having symptoms of Inflammatory Bowel Disease, such as cramping and diarrhea.  In addition, your physician may have checked for lactase, which helps digest lactose, during your child's endoscopy.  A deficiency in lactase may result in symptoms of lactose intolerance, including bloating, gassiness, and diarrhea, with dairy products.

Low Residue Diet

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Will my child require surgery?

Unfortunately, some children with Inflammatory Bowel Disease will require surgery to remove a part of their intestine. We utilize surgery in patients who are unresponsive to all of our medications yet still having symptoms of pain and diarrhea, or who have developed a narrowing of their intestine which will not resolve with medication. Our pediatric surgeons have extensive experience in performing surgery in children with Inflammatory Bowel Disease.

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How can I help my child cope with Inflammatory Bowel Disease?

It is natural that some children may become overwhelmed with the thought of having a lifelong illness. They will need the support of family, friends, and sometimes, a professional counselor. Many of our patients and their families benefit from attending support groups and summer camps for children with Inflammatory Bowel Disease.  Many of these activities are sponsored by the Crohn's and Colitis Foundation of America (CCFA), and information is available at www.ccfa.org.

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Can my child participate in research to help improve the treatment of Inflammatory Bowel Disease?

The physicians at Riley Hospital for Children are actively participating in a large variety of local and national research studies. These studies are examining new treatments and new tests to help with diagnosis. We are also participating in studies about the quality of life in children with Inflammatory Bowel Disease. Finally, we are performing sophisticated studies about protein and calorie metabolism in these children. We are the recipients of several grants to continue this research. Your physician may ask you about your interest in participating in these studies.

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Where else can I learn about Inflammatory Bowel Disease?

We have included links to several websites that may provide more information about Inflammatory Bowel Disease.

Crohn's and Colitis Foundation of America: www.ccfa.org

North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition: www.naspghan.org

Children's Digestive Health and Nutrition Foundation: www.kidsibd.org

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How can I make an appointment to see a physician at Riley Hospital for Children?

Please call (317) 274-3774 to make an appointment. Some patients may need a referral from their primary care physician. Our office staff would be happy to help you.

[Keywords: Gastroenterology, Inflammatory Bowel Disease, Gastroenterology, Hepatology, Nutrition, gastrointestinal, stomach, small intestine, large intestine, colon, Crohn's disease, ulcerative colitis, inflammation, indeterminate colitis.]

Disclaimer: The information provided is not intended to replace the advice of a medical professional. If you have medical concerns, seek the guidance of a medical professional. Consult your physician about any medications, supplements or treatments you are considering, and when seeking treatment, disclose all medications you are taking or treatments you are receiving. Riley Hospital for Children, University Pediatric Associates and IU School of Medicine disclaim any liability for the decisions you make based on this information.

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