KidsMD Health Topics

Our Health Topics

Crohn's Disease

  • It can be very scary if your child is having recurring bouts of abdominal pain, blood in the stools, and diarrhea that don’t seem to go away. These symptoms may indicate inflammatory bowel disease (IBD). With IBD, parts of the intestinal tract become inflamed and may cause cramping, pain, bleeding and diarrhea. The good news is that once diagnosed, most children with IBD respond quite well to treatment.

    Crohn’s disease (CD) and ulcerative colitis (UC) are the two main forms of IBD. If your child has Crohn’s disease, it means that one or more areas of her intestinal tract are inflamed. It’s a chronic - but highly manageable - disease.

    • Crohn’s disease may be mild, severe or anywhere in between.

    • It can affect any region of the digestive tract, including the mouth, esophagus, stomach, duodenum, appendix, colon or anus. The most common area involved is the last part of the small intestine (terminal ileum) and the first part of the large intestine.

    • Crohn’s is most often diagnosed in young adults, but can be seen in children as young as 7.

    • It can often be controlled very well with medication and lifestyle changes, and surgery may also be an option.

    Watch "Growing up with Crohn’s Disease – What Every Family Should Know", a series of short videos to learn more about Crohn’s disease.

    How Boston Children's Hospital approaches Crohn's disease

    Our clinicians provide a range of services and support for children and teenagers with Crohn's disease:

    • second opinions
    • management of IBD in school, work or social situations
    • management of medications
    • nutritional counseling
    • monitor growth and development
    • surgical care (in certain cases)

    At the Inflammatory Bowel Disease Center, we are dedicated to the health and long term well-being of children and young adults with Crohn's Disease. We care for patients in Boston and in our many locations in Massachusetts.

    As a leading referral center for pediatric IBD, our Center is committed to discovering the causes of, and improving the treatments for, Crohn’s disease and ulcerative colitis. 

  • We understand that you may have a lot of questions when your child is diagnosed with Crohn’s disease:

    • What is it?
    • What are the treatments?
    • How will it affect my child long-term?

    We’ve tried to provide some answers to those questions here, and when you meet with our experts, we can talk with you more about your child’s diagnosis and treatment options.

    What is Crohn’s disease?

    Crohn’s disease (CD) is a condition in which one or more areas of the digestive tract become inflamed. The most common area involved is the last part of the small intestine (terminal ileum) and the first part of the large intestine. It’s a chronic - but highly manageable - disease.

    What are the treatments?

    The primary treatments for CD are medications that reduce inflammation and/or reduce the activity of the immune system. Sometimes, children with CD need surgery in order to remove a diseased piece of intestine that has not responded to medication or to drain an abscess (pocket of pus caused by an infection)

    How will it affect my child long-term?

    With regular medications and visits to the doctor, the vast majority of patients lead normal, happy lives.

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

    Crohn’s disease and ulcerative colitis (UC) are the two types of inflammatory bowel disease (IBD). Within IBD, the split is about half and half.

    Crohn’s disease  

    Ulcerative colitis  

    Can affect any part of a child’s intestinal tract 

    Affects the colon, and very occasionally the lowest part of the small intestine

    Symptoms include diarrhea, bleeding, abdominal pain, tiredness, fever or weight loss 

    Symptoms usually include abdominal cramps and diarrhea with bleeding

    Can affect the entire thickness of the intestinal wall

    Involves only the innermost lining of the intestinal wall

    Can affect different segments of the intestine – “skipping” some in the middle

    Inflammation does not “skip” sections of the intestine

    Crohn’s is a little more challenging to treat because it can involve many different areas of the intestine. And since the symptoms are more subtle, it sometimes takes more time to diagnose.

    What is “indeterminate colitis”?

    Approximately one out of 10 children have what’s called “indeterminate colitis,” which means that the doctor can’t definitively state whether the disease is UC or Crohn’s, even after thorough medical testing. Over time, many cases of indeterminate colitis will ultimately be diagnosed as either ulcerative colitis or Crohn’s.

    Is inflammatory bowel disease (IBD) the same as irritable bowel syndrome (IBS)?

    Understandably, people sometimes get these two conditions confused, but they’re actually very different, even though the symptoms may appear to be similar:

    • In IBS, there’s no inflammation of the intestine.

    • The inflammation present in IBD can cause permanent scarring and damage to the intestine that may require surgery – this isn’t so with IBS.

    • Different medications are used to treat IBD and IBS.

    • In general, people with IBS don’t have blood in the stool. 

    Sometimes it’s not clear whether a child who has IBD is experiencing an IBD flare-up or an episode of IBS, and the doctor will perform a colonoscopy to check for inflammation. If inflammation is present, it’s likely to be a flare-up of IBD.

    Is inflammatory bowel disease common?

    Yes, it’s quite common. Around 1.4 million Americans have inflammatory bowel disease, including around 80,000 – 100,000 children and young adults.

    Why is Crohn’s disease a concern?

    Over time, the inflamed intestine may develop narrow areas (strictures) – that can make it hard for food to pass through. Also, when the small intestines are inflamed, it creates scar tissue, which can build up and require the removal of that section of the intestine.

    Crohn’s can also sometimes create holes in the intestines that lead to abdominal infections, similar to a ruptured appendix.

    Causes

    What caused my child’s Crohn’s disease?

    Scientists have not yet discovered the cause of Crohn’s disease colitis, but it’s an area of active research. We believe that both genes and environment play a role. We also know that the immune system is involved, which is why treatment often involves medication to reduce its activity.

    Symptoms

    What are the symptoms of Crohn’s disease?

    While symptoms may affect each child differently, common ones are unexplained fevers and diarrhea with or without blood. You may also notice that your child is losing weight and isn’t growing as expected, since pain may make your child not want to eat, and inflammation may prevent her small intestine from absorbing the nutrients her body needs. Other symptoms include:

    • abdominal pain, often in the lower right area
    • weakness
    • fatigue
    • rectal bleeding (although this is more often associated with ulcerative colitis)
    • obvious blood in the stools or black, tar-like stools
    • joint pain
    • rashes

    Some infections can cause symptoms like these, and it’s important for these to be excluded as possible causes. Crohn’s can be a scary disease for a child to have, and your reassurance and support can go a long way toward making her feel better.

    FAQ

    Q: Will my child be all right?
    A: Most likely yes. For the vast majority of children with IBD, doctors are able to control their condition with medication and/or surgery, and live full and happy lives.

    Q: Will my child always have Crohn’s disease?
    A: Unfortunately, since a cure for IBD has yet to be found, it’s likely that CD will always be a part of your child’s life. But research into better treatments – and the possibility of a cure – is ongoing, at Children’s and elsewhere.

    Q: How will my child’s life change because of this disease?
    A: Your child will probably have to take medications for the foreseeable future. She’ll also have more doctors appointments than before her diagnosis, and may have to stay at the hospital at some point. Other than that, there’s no reason to think that IBD will restrict your child’s life in any significant way. Many celebrities, famous athletes and even former presidents have had IBD.

    Q: What’s the difference between Crohn’s disease and inflammable bowel disease (IBD)?
    A: Crohn’s disease is one of the two major types of IBD (ulcerative colitis is the other).

    Q: Is IBD caused by stress?
    A: No, there is no evidence that IBD is caused by stress. But living with a chronic illness can be stressful, and stress can make your child feel less well or even contribute to a flare-up. That’s why it’s best for your child to stay on her medical regimen even when she’s feeling well, and anticipate and prepare for stressful situations.

    Q: Does my child need to follow a special diet?
    A:
    Most often, we recommend that children simply follow the food pyramid or the dietary guidelines for Americans to ensure that they get the proper nutrition. Within those guidelines, you and your child can pick certain foods based on her preferences and how they seem to affect her condition. Some children with Crohn’s, especially those who have narrowed segments of intestine, may find it difficult to tolerate insoluble fiber, such as seeds, bran and the skin of fruit (e.g. apples).

    Some children may be able to control mild symptoms by simply avoiding the foods that seem to upset their intestines. At Children’s, our dedicated IBD nutritionist can meet with your child and your family to develop a sound nutritional plan.

    Q: Should my child restrict her physical activities?
    A: Generally speaking, no. As long as your child is feeling well enough to participate, physical activity is encouraged. In addition to the many other benefits of exercise, it can also help maintain bone density, which can be very helpful for children with IBD. Your child’s doctor will give you more specific advice about good activities for your child.

    Q: Will my child need to be hospitalized?
    A: Sometimes a child’s symptoms may be so severe that she needs to spend some time in the hospital, so that we can correct malnutrition and stop diarrhea and the loss of blood, fluids and mineral salts. We may treat her with a special diet, feeding through a vein, medications, or, in some cases, surgery. But please be assured that as a valued member of your child’s health care team, you’ll be kept fully up to date at all times.

    Q: What is a flare-up and what should I do if my child experiences one?
    A: A flare-up is a usually a recurrence of one or more of the symptoms that originally led your child to be diagnosed with Crohn’s (e.g., abdominal pain, fatigue and weight loss). She may also experience inflammation of the joints (arthritis), and sores in her mouth or on her skin. If this happens, it’s a good idea to check with your child’s primary care doctor or gastroenterologist.

    Q: What, if anything, should I tell my child’s school about her IBD?
    A: Communication is key when dealing with your child’s school, and it’s a good idea to let them know of the diagnosis as early as possible. It’s important that your child’s teachers know that she may need to be excused to go to the restroom suddenly and/or frequently, and may miss school due to her illness. The school nurse can usually write a confidential memo to your child’s teachers. At Children’s, our IBD doctors and social worker will help communicate with your child’s school and draft letters explaining the illness to the school.

    Q: What are some things that I can do to help my child?
    A: IBD can be hard to discuss sometimes, because many of its symptoms involve things that we don’t normally talk about. But the most important thing is communication – it’s very important that you be able to talk to your child about her condition. Be open about it, and if you’re embarrassed, don’t hide it. Let your child know that you understand that when it comes to managing her condition, a lot is being asked of her.

    It’s also a good idea to learn as much as you can about IBD, talk to people who are in similar situations, and try to educate the people who are closest to you about your child’s condition.

    Your teen and IBD

    The teenage years are challenging even without having to deal with a chronic illness. Emotional mood swings and the desire for increased independence can be especially intense for teens with IBD. Understanding what your child is going through can help you support her during this important time — and help you cope, too.

    Living with IBD

    IBD can be an embarrassing disease for many teens, and your child may find it hard to talk about her bowel movements and tolerate invasive tests and exams. But it’s important that she feel comfortable discussing her condition so that we can best monitor her condition and make sure the treatments are working. This is why a good relationship between your child and her doctor is crucial. It may also be helpful to have another adult with whom she can talk about things that she may not feel comfortable discussing with family members.

    As your child begins to feel better and gets back to her regular activities, there is a risk that she may choose not to take her meds. This is called “non-adherence,” and may happen for several reasons:

    • She may feel a strong desire to feel “normal” and ignore requirements and restrictions that make him or her feel different from peers.

    • She may experience unwanted side affects from her medications.

    • She may resent the need for close monitoring.

    • She may find it difficult to incorporate a medical regimen into a daily routine.

    • She may feel angry at having to take medications, forget to buy or take them, and otherwise take her anger out on the medications.

    Your child may also:

    • feel like IBD and treatment for it has taken over her identity and decreased her self-esteem

    • experience poor growth or delayed sexual maturation that can make normal teenage concerns about appearance even worse.

    • feel like she has lost a sense of belonging, dignity and respect from others

    • feel concern about falling behind in school

    • feel as though she is being rejected by her peers, and experience loneliness or withdrawal

    Of course, it’s up to your teen to decide how much she feels comfortable sharing – that’s part of letting her maintain her privacy and feelings of control. Let your teen know that while it may feel embarrassing at first, many teens find that telling their friends about their IBD strengthens their friendship – the friend is trusted with the information, and the child with IBD feels that they can trust their friend.

    How you can help

    It’s always challenging for a family to deal with chronic disease, and IBD may raise issues of privacy and independence that feel especially emotional. This can strain communication between you and your teen. Remember that good communication includes talking and listening, and sometimes what a teen needs most is simply to feel understood.

    • Encourage your child to talk openly with you.

    • Keep your initial focus on listening to what your teen is saying, and making sure you understand what she means.

    • To the extent possible, include your teen in decision-making about her health care from the beginning.

    • Talk with your child about her medication.

    • Recognize that it can be a pain to take medicine every day.

    • Make sure she knows what she is taking and why.

    • Help your teen figure out ways to be reminded that it’s time to take the medicine (such as setting an alarm on her cell phone).

    • Encourage your teen to find peer support among other teens with IBD. This can decrease her sense of being “different,” and reassure her that what she’s going through is normal.

    • Point your child towards UC and Crohn’s, (http://www.ucandcrohns.org), where she can learn and connect with other teens with Crohn’s.

    • Help your child to set long-term academic and vocational goals.

    • Encourage healthy body images in general, especially in your teen.

    • Support your teen’s efforts to sustain and develop friendships and other social relationships.

    • Your child is the same person he was before the diagnosis. As you help your child work medication and other precautions into her everyday routine, help her to remember this by maintaining continuity with family life as much as possible.

    For teens

    Tips for living with IBD:

    • Get enough rest, keep doctor’s appointments and take medicines even when feeling well. Remind her that these things are why you're feeling well.

    • Always be prepared. Wherever you are, find out where the bathrooms are, and, if possible, where the least-often used ones are for more privacy.

    • Anticipate things that might cause stress, and do what you can to minimize the effects. Planning well, breathing exercises, meditation and involvement in hobbies are all good stress-reducers.

    • Rather than telling people nothing, give a little basic info to set the record straight. Rumors flare up in the absence of knowledge.

    • Put your phone on vibrate and keep it in your pocket to remind you when you need to see the nurse or take your medicine.

    Good things to keep on hand:

    • soft tissues
    • travel sizes of wet wipes
    • extra pair of underwear
    • a copy of prescriptions

    College

    • While starting a college is always a time of new choices and challenges, many teens with IBD are already in the habit of making choices that are good for their health. Some things to consider:

    • If you have eating restrictions, ask to meet with the campus dining services’ nutritionist. If you need to be off the meal plan, certain accommodations can usually be made.

    • The campus Disability Services may be able to help if you need to request a private room or a room that’s closer to a restroom.

    • Familiarize yourself with the campus Health Services, and identify a physician or point person there who knows about your IBD before you arrive. Your gastroenterologist may be able to recommend someone.

    • Additional information on going off to college with IBD may be found at: IBDU.org

    Travel

    You needn’t be denied the rewards of travel because of Crohn’s disease. Lots of people with IBD are able to manage their condition well enough to let them focus on their destination and not their disease.

    • Look online to find public toilets all over the world. You can do this even on your cell phone.

       
    • Learn how to ask where the bathroom is in the host country’s language – you can often find this in a guide book, or ask the receptionist at your hotel.

    • If you’re flying, book your ticket early and ask for an aisle seat. If you do not get one, you could politely ask another passenger to switch with you.

    • Be especially careful to stick to your medical regimen for at least the week before you travel, to minimize the chances of a flare-up.

    • Make sure to put medications and prescription information in your carry-on bag, since luggage does sometimes get lost and it may take some time to have it returned to you.

    Remember, we’re here to help. Please contact us with any questions you have.

  • Once we have an accurate diagnosis of your child’s condition, we can start her on the road to proper care and management of her IBD – and most importantly, have her feeling better as soon as possible.

    Most commonly, Crohn’s disease is diagnosed based on the results of:

    • blood tests – to identify anemia or inflammation

    • stool sample - to check for bleeding or infection

    • endoscopy – this procedure involves inserting a long, flexible, lighted tube called a endoscope through the child’s mouth, and down the intestinal tract to her small intestine. This allows the doctor to check for inflammation, bleeding, ulcers and other growths; and possibly treat some problems that are discovered.

    • colonoscopy – this procedure involves inserting a long, flexible, lighted tube called a colonoscope in through the rectum up into the colon. The colonoscope allows the doctor to check the lining of the colon for inflammation, bleeding, ulcers and other growths; and possibly treat some problems that are discovered.

    • biopsy – During the endoscopy or colonoscopy, your child’s doctor will most likely remove a tiny sample of tissue. Our pathologists will examine this under a microscope to get more information about your child’s condition.

    • imaging studies – performed by a specialist using different methods, these allow doctors to have a look at areas that the endoscope can’t see

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we’ll meet with you and your family to discuss the results and outline the best treatment options.

  • Many parents are concerned when their child is diagnosed with a chronic illness, and understandably so. No parents want their child to be unwell. But inflammatory bowel disease (IBD) is very treatable, and with consistent health care and a good understanding of the condition, the vast majority of people with IBD go on to live full and active lives. You and your child are in excellent hands at Boston Children's Hospital.

    Depending on the severity of symptoms, treating Crohn's disease often requires a combination of approaches, especially at first:

    1. First diagnosed

    Most of the time, children are having severe symptoms when they are first diagnosed. If your child feels unwell, the first thing we will do is get her symptoms under control as quickly as possible.

    To do this, we give your child a short course of very powerful medications (typically steroids) known as induction agents. Most children begin to feel better in anywhere from a few days to a week or two.

    During this time, you and your child will meet with members of your child's IBD team, all of whom have expertise in working with children with IBD and their families. Besides your child's primary gastroenterologist, you may talk with:

    • a nurse specialist
    • a social worker
    • a registered dietician
    • a nurse educator

    2. Managing Crohn's disease

    Once your child's symptoms have subsided, we'll start her on a course of maintenance medicine. Anti-inflammatory medications may help with abdominal pain and diarrhea, and if your child has a more severe case of IBD, we may prescribe more steroids, antibiotics, or drugs that suppress the immune system (immunosuppressants). It may take a while to figure out which medications work the best for your child. While CD is a lifelong condition, our goal is to keep it in remission for as long as possible – meaning a “normal” life for your child, with few to no symptoms.


    3. Flare-ups

    Flare-ups are when your child again begins to experience symptoms of IBD, or feeling especially tired and unwell. If this happens, it's a good idea to check with your child's primary care doctor, who can refer you to us at Children's if need be.

    If your child is having a flare-up, we'll treat it with rescue medicines – a short course of strong medications. We'll also monitor her closely to determine what may have caused it and whether any changes should be made to her treatment plan.

    Surgery

    While we almost always start treatment for IBD with medication, sometimes a child may not respond (or stop responding) to medications, and be a good candidate for surgery. The decision to have surgery is a joint one, made between your child, your family, your child's gastroenterologist and the surgeon.

    Your child's doctor may recommend surgery to remove a section of her intestine The surgeon will be careful to remove as little as absolutely necessary, and sew the two healthy ends back together. Doctors also sometimes perform surgery to remove fistulas (areas of abnormal connection between loops of intestine or other organs) or drain abscesses (pockets of pus in the body caused by infection). The vast majority of children who undergo surgery for Crohn's do not require an ostomy.

    It's important to remember that with Crohn's disease, surgery is rarely a cure, since inflammation may recur in other locations throughout the digestive tract. The purpose of surgery is to keep your child feeling well, and to minimize the damage done to her intestine.

    Follow-up

    Lifelong follow-up is crucial with IBD, since it allows your child's doctors to:

    • make sure her medication is working
    • check for side effects of the medication
    • monitor your child for appropriate levels of growth
    • use blood tests to make sure your child's blood chemistry is as it should be

    We also recommend bone scans (to monitor bone density and prevent bone weakening) and eye exams.

    How often will my child need follow-up appointments?

    This depends on your child, her treatment plan and how she is feeling. If your child is doing very well, and experiencing few to no symptoms, your child's doctor may want to see her every six months. If your child is on immunosuppressant medications, there's a higher risk of complications, and we'd like to see her every three months. If your child is not feeling well, she will come in every four weeks or so.

    Coping and support

    It's important to remember that while Crohn's disease can feel very isolating, many children and their families have been down this path before. We've helped them, and we can help you, too. There are lots of resources available for your family – within Children's, in the outside community and online. These include:

    Patient education: From the very first visit, our nurses will be on hand to walk you through your child's treatment and help answer any questions you may have. And they'll also reach out to you by phone, continuing the care and support you received while at Children's.

    Parent to parent: Want to talk with someone whose child has an IBD? We can put you in touch with other families who have been through similar experiences and can share their experience. In fact, the Boston area IBD support group meets right here at Children's.

    Faith-based support: If you are in need of spiritual support, we'll help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you, pray with you and help you observe your own faith practices during your child's hospitalization.

    Social work: Our IBD social worker can help you and your family:

    • adjust to the initial diagnosis
    • learn how to navigate everyday life with IBD
    • access community groups and other support available to your and your family

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    The Crohn's and Colitis Foundation of America (CCFA) is an organization dedicated to improving the lives of people with IBD and find a cure for these diseases.

    UC and Crohn's: a Site for Teens is an online resource where your teen can learn and connect with other teens with UC.

    Your Child with Inflammatory Bowel Disease: A Family Guide for Caregivers
    Co-edited by Athos Bousvaros, MD, MPH, associate director of the Inflammatory Bowel Disease Program here at Children's, Your Child with Inflammatory Bowel Disease is a comprehensive and accessible book that talks about all aspects of having a child with IBD.

  • Boston Children’s Hospital is home to the world’s most extensive research enterprise at a pediatric hospital. We also have many partnerships with research, biotech and health care organizations, and we work together to find innovative ways to improve kids’ health.

    The Inflammatory Bowel Disease Treatment and Research Center is currently investigating many areas to try to identify causes and improve diagnosis and treatment of Crohn’s disease and ulcerative colitis, including:

    • investigating changes in genes that may make a person susceptible to Inflammatory Bowel Disease (IBD)
    • studying bacteria in the intestines that may participate in causing irritation and inflammation present in IBD
    • determining which of our current treatments are most effective in getting these diseases under control
    • studying abnormalities in the immune system that may predispose someone to IBD
    • discovering new, noninvasive ways of assessing disease activity in children with IBD
    • investigating new medications in treatment of Crohn's disease, ulcerative colitis and pouchitis after ulcerative colitis surgery.
    • studying bone mineral density in IBD and treatments of low bone density
    • explaining the cause and refining the treatment of iron deficiency in IBD
    • studying ways to prevent and treat depression in children and adolescents with IBD

    Learn more about our clinical trials.

Request an Appointment

If this is a medical emergency, please dial 9-1-1. This form should not be used in an emergency.

Patient Information
Date of Birth:
Contact Information
Appointment Details
Send RequestIf you do not see the specialty you are looking for, please call us at: 617-355-6000.International visitors should call International Health Services at +1-617-355-5209.
Please complete all required fields

This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

This department is currently not accepting appointment requests online. Please call us at: 617-355-6000. International +1-617-355-6000.

Thank you.

Your request has been successfully submitted

You will be contacted within 1 business day.

If you have questions or would like more information, please call:

617-355-6000 +1-617-355-6000
close
Find a Doctor
Search by Clinician's Last Name or Specialty:
Select by Location:
Search by First Letter of Clinician's Last Name: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
More optionsSearch
Condition & Treatments
Search for a Condition or Treatment:
Show Items Starting With: *ABCDEFGHIJKLMNOPQRSTUVWXYZ
View allSearch
Visitor Information

Contact the Inflammatory Bowel Disease Center

  • 617-355-6058
  • International: +1-617-355-5209
  • Fax: 617-730-0254
The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
- Sandra L. Fenwick, President and CEO
Close