How Common Is IBD?
About 1.4 million Americans have IBD. Thirty thousand new cases are diagnosed every year.
Young people between the ages of 15 and 35 are most likely to get IBD, but anyone can get it. It is more common in Caucasians. IBD is especially common in those who are Jewish.
What’s the Difference between Crohn's & Colitis?
Ulcerative colitis affects only the colon. It usually involves the rectum and can affect areas up into the colon. If it affects the whole colon, it is called pancolitis.
Crohn's disease can involve any part of the gastrointestinal tract, from the mouth to the anus.
Ulcerative colitis involves only the lining of the bowel (not the entire thickness of the bowel wall).
Crohn's disease affects the entire thickness of the intestinal wall.
Patients with ulcerative colitis and those with Crohn's disease that involves the colon have a greater risk of getting colon cancer, and this risk increases over time.
What Causes IBD?
Although the exact cause of IBD is not known, these are thought to play a role in both ulcerative colitis and Crohn's:
What Are the Symptoms?
- Genetic tendency: Certain genes you were born with, like family traits, make it more likely that you will get IBD
- Environmental trigger: Something you are exposed to like medications, infections or toxins
- Immune system: The patient’s immune system reacts inappropriately. For example, it interprets good bacteria as something harmful and attacks it, which causes inflammation
- Bacteria that are normally in the intestine: The good and bad bacteria that belong in the intestine are not balanced
Ulcerative colitis and Crohn’s disease have many similar symptoms, including:
- Rectal bleeding
- Abdominal (belly) pain
- Decreased appetite
- Weight loss
Although some symptoms can be similar to other illnesses, inflammatory bowel disease is a chronic, or long-term condition which does not resolve on its own after several days.
Ulcerative colitis and Crohn’s disease both have times when disease symptoms go away (remission). They also both have times when symptoms become more severe (flare). The symptoms, types and severity are unique to each individual.
How Is IBD Diagnosed?
Because Crohn’s disease and ulcerative colitis share many of the same symptoms, it may be difficult to correctly diagnose which condition a child is suffering from. Additionally, IBD is sometimes mistaken for irritable bowel syndrome (IBS), which also shares many of the same symptoms. Diagnosing these diseases requires several tests:
How Is IBD Treated?
- Blood tests – to check for anemia (low red blood cell count). The tests can also show if there is an increased number of white blood cells, which might mean that there is an infection or inflammation somewhere in the body.
- X-rays – special CT scans, MRIs and barium X-rays to look for inflammation, swelling or narrowing of the intestine
- Endoscopy (looking inside the bowel with a flexible tube)
The ultimate goal of treatment is to make symptoms go away and keep the patient in remission (no symptoms).
Medicine is tried first to help control swelling and irritation for both ulcerative colitis and Crohn's disease. There are several types of medications used to control the swelling and irritation. Medications are chosen based on where the disease is located and the severity of the irritation. In many cases, medications work to control both diseases, so surgery is not needed for a very long time.
Because of the inflammation with IBD, the intestine is unable to do its job of breaking down food and absorbing the nutrients. This can cause poor growth, poor weight gain and poor nutrition. The IBD team includes dietitians who are experts in evaluating nutrition and who work with patients and families to create an individual nutrition plan. The goal is to ensure each patient is getting a variety of foods, enough calories, and nutrients to support growth and development.
Enteral (nutritional) therapy may be helpful in some patients with IBD. Patients who are felt to be a good candidate for enteral nutrition receive support and guidance from our expert IBD dietitians.
Surgery may be recommended when medicine cannot control the symptoms or when there are other medical problems. Surgery for Crohn's disease may help relieve constant symptoms or correct problems. It is not a cure for Crohn's disease because the disease usually comes back.
Ulcerative colitis can be cured by removing the colon (colectomy). Colorectal surgeons in Cincinnati Children’s Colorectal Center are among a very few in the country who can perform minimally invasive (laparoscopic) surgeries on children and teens with IBD.
What Are Flares?
Children with inflammatory bowel disease can go months or even years without experiencing any symptoms. But on occasion, symptoms will reappear. This is called a “flare,” and it can happen even when a person is working hard to manage their condition through diet and medication.
A flare can involve some or all the symptoms that your child experienced when they were diagnosed. This can include symptoms such as diarrhea, constipation, rectal bleeding, abdominal cramps and pain, fever, fatigue, weight loss, joint inflammation and pain, and sores in the mouth or on the skin.
How Can Flares Be Managed?
Certain things can trigger a flare, including:
- Being under a lot of stress, which can worsen symptoms such as cramping and diarrhea
- Not taking medication for IBD as directed
- Taking medications such as antibiotics, ibuprofen and aspirin
- Gastrointestinal infection
- Seasonal changes
How you respond to a flare can influence the severity of symptoms and how long they last. Following the guidelines below can help.
Talk to your child’s doctor. Call your child’s doctor at the first sign of serious symptoms. The doctor may recommend “rescue medicines” − a short course of strong medications − to treat the flare. The doctor also can help identify why the flare occurred, and whether any changes are needed to your child’s treatment plan.
Help your child stay hydrated, well rested and active. Hydration is always important for children with IBD, but especially for those who are experiencing diarrhea. Offer water and sports drinks with electrolytes, but avoid high-sugar drinks such as soda or juice, which can worsen symptoms. Aim for at least 64 ounces of fluid a day.
Rest will help your child heal more quickly. But activity is important too, since it can help minimize the joint stiffness that is sometimes associated with IBD.
Maintain good nutrition. Easy-to-digest foods can help your child’s bowel recover during a flare. Your child’s doctor may suggest a protein or nutritional shake during this time.
Be careful with pain medications. Some over-the-counter pain medications can make IBD symptoms worse. If your child experiences joint pain during a flare, try heat therapy, gentle massage and rest instead of anti-inflammatory medications.
Manage skin irritation and ulcers. If your child has frequent diarrhea during a flare, be sure to keep the anal area as clean and dry as possible. A zinc oxide-based topical ointment can protect the skin if it isn’t already broken. If the skin is broken, call your child’s doctor for guidance.
Practice good oral hygiene. Flossing and brushing help prevent painful mouth ulcers during a flare. If your child has a mouth ulcer that does not heal in 10 to 14 days, ask the doctor for help.
What Is the Role of Diet?
When it comes to IBD, there is no “one size fits all” diet that children should follow. However, food does play an important role in managing IBD, for two reasons. One is because proper nutrition helps children grow and boosts the immune system. The other is because some foods are known to trigger symptoms of IBD.
What to eat? A good starting point for children with IBD is to simply remember the basics of healthy eating: a well-balanced diet is high in protein, whole grains and fresh produce. It can include meat, fish, poultry, dairy products (unless your child is lactose intolerant), breads and cereals, fruits and vegetables, and healthy fats such as olive and canola oils.
The next step is to figure out which foods seem to cause symptoms for your child. These might include:
- Foods that contain lactose (sugar in milk) and fructose (sugar in fruit) − especially processed forms of fructose, such as high-fructose corn syrup
- Foods that tend to increase gas and diarrhea, such as greasy and fried foods, spicy foods, beans, cabbage and carbonated drink
Patients who have been diagnosed with narrowing of the intestine are most at risk for an obstruction.
- Foods to avoid may be raw vegetables, watermelon seeds, nuts, crunchy nut butters and popcorn
- Foods containing insoluble fiber (apple skin, nuts, seeds, whole grains)
Keeping a food log can help you and your child keep track of the foods that seem to cause problems. This list of “problem foods” may change over time. Your child’s care team can work with you to develop a nutrition plan that will provide your child with adequate calories and balanced nutrition, while minimizing the risk of flares. They will customize the plan based on your child’s age, trigger foods and other factors.
Even with good eating habits, children with IBD sometimes don’t get all the nutrients they need to grow and develop. This is because the inflammation in the intestines associated with IBD can interfere with the digestive process. When this is the case, your child’s doctor or dietitian may recommend a daily multivitamin, nutritional supplements or special high-calorie liquid formulas.
What Is the Long-Term Outlook for IBD Patients?
No cure is available for inflammatory bowel disease. But most children with IBD are able to control their symptoms with medication, lifestyle changes and, in some cases, surgery.
However, living with IBD is not always easy, especially when symptoms flare. Parents need to be aware of the potential emotional concerns and physical complications that children with IBD face.
A few reasons that children with IBD struggle emotionally include:
- Frustration with the hassles of managing their symptoms
- Inability to maintain a healthy weight because of their symptoms or medications
- Not being like “everyone else”
- Embarrassment about symptoms such as frequent diarrhea
Parents can support their children by helping them communicate their feelings, encouraging them to participate in all the normal activities of childhood whenever possible and helping them find strategies to deal with a flare. If emotional concerns persist, a licensed mental health counselor may be able to help.
Parents should seek medical attention for their child at the first sign of serious physical complications. Digestive complications associated with IBD can include:
- Obstruction of the bowel
- Fistula (abnormal passageway in the rectal area)
- Tears in the anus that cause itching, pain or bleeding
- Ulcers in the digestive tract
Non-digestive complications associated with IBD can include:
- Eye inflammation, pain, itchiness or redness
- Mouth sores
- Joint swelling and pain
- Skin sores, bumps and rashes
- Kidney stones
- Liver disease
These complications could be caused by IBD, by a side effect of your child’s medication or by another, unrelated condition. Early recognition and treatment is very important. Keeping a log of any symptoms your child is experiencing can help you recognize when a complication may be developing.
Contact the the Schubert-Martin Inflammatory Bowel Disease Center at Cincinnati Children's at 513-636-4415 or firstname.lastname@example.org.