Inflammatory Bowel Disease in Children

Gastrointestinal conditions, including inflammatory bowel disease (IBD) in children, are often difficult to diagnose because IBD symptoms in children, like abdominal pain and cramping, are common childhood complaints. That’s why it’s important for your child to be evaluated by board-certified pediatric gastroenterologists who have the expertise to accurately diagnose IBD in children, and develop a customized treatment plan.

At Nemours, we’re passionate about treating the whole child not just the condition. And we promise to do everything we can to make sure your child has more happy and healthy days with fewer IBD symptoms.

Learn More About Inflammatory Bowel Disease in Children

Inflammatory bowel disease refers to two chronic (or recurring) conditions called “Crohn’s disease” and “Ulcerative colitis,” which may result in inflammation (redness, swelling, or ulcerations) in parts of the intestinal tract.

Like asthma, Inflammatory bowel disease (IBD) in children is a chronic disease that can “flare up” from time to time. Although IBD requires lifelong care, it is a highly manageable condition. Our team can help your child reduce the amount of flare-ups for months or even years with medications, lifestyle changes, and in some cases, surgery.

IBD Symptoms in Children

Symptoms of inflammatory bowel disease (IBD) in children in children recur in bouts (flare-ups). They may include:
  • abdominal cramping
  • blood in the stool
  • diarrhea
  • constipation
  • weakness
  • fatigue
  • loss of appetite/weight loss
  • fever

Sometimes, Crohn’s disease and ulcerative colitis in children causes inflammation to other parts of the body, resulting in joint pain and/or skin rashes. Other times, IBD doesn’t cause symptoms, making the condition more difficult to readily diagnose.

Integrated Specialty Care for Pediatric Inflammatory Bowel Disease

At Nemours, we take a family-centered approach to caring for kids, which means our families play an active role in treatment decisions. Along with board-certified pediatric gastroenterologists, your medical team may include specialists in allergy and immunology, nutrition, genetics, pediatric surgery, psychology and psychiatry, and behavioral health — all working together to bring you the best in whole-child health care.

Nemours Children's Hospital, Orlando

13535 Nemours Parkway
Orlando, FL 32827
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For Appointments: (407) 650-7715

What to Bring
  • photo ID
  • medical and pharmacy insurance cards
  • preferred pharmacy name and phone number
  • names and dosage of all medications, including over-the-counter medication, your child is currently taking
  • guardianship and custody papers, if a legal guardian rather than a parent accompanies your child
Helpful Resources
Resources for Patients & Families

Pediatric gastroenterologists at Nemours Children’s Hospital expertly diagnose and treat inflammatory bowel disease (IBD) in children. Our team leads a comprehensive Inflammatory Bowel Disease Program that provides expert diagnosis, treatment and symptom management for children of all ages with IBD.

In addition to designated clinic days and education programs, our hospital offers advanced diagnostic technologies, including magnetic resonance enterography (MRE), and expert multidisciplinary care from surgeons, nutritionists and psychologists trained in the physical and emotional aspects of IBD.

Like asthma, IBD is a chronic disease that can "flare up" in children from time to time. Although IBD requires lifelong care, it’s a highly manageable condition. With the right treatment — which may include a combination of medicines, lifestyle changes and/or surgery — your child can be in "remission" (without flare-ups) for months or even years.

For your child, this means more happy days devoted to just being a kid.

Why Choose Nemours Children’s Hospital

Families from Central Florida, the Southeast, across the country and around the globe come to Nemours Children’s Hospital in Orlando’s Lake Nona Medical City because of our comfortable, high-tech facility and our pediatric specialists and surgeons who are consistently recognized among the very best in clinical care, many of whom are also engaged in world-class research.

Highlights of Our Pediatric Gastroenterology Care

Highlights of our pediatric gastroenterology care:

  • world-class facilities featuring the latest gastroenterology diagnostic techniques and equipment available
  • expertise in treating minor to extremely complex gastrointestinal problems including neuromuscular disorders and chronic and acute conditions of the stomach and esophagus, intestines, liver, gallbladder and pancreas
  • lead/participate in multidisciplinary clinics and programs to evaluate and treat  digestive health issues and related conditions such as obesity, aerodigestive disorders, cystic fibrosis, motility disorders and others
  • advanced pediatric medical imaging services available onsite
  • academic medical center means we’re at the leading edge of pediatric gastroenterology research and able to treat highly complex pediatric conditions
  • fully equipped pediatric operating rooms with board-certified pediatric anesthesiologists
  • experienced in innovative surgical techniques that minimize surgery risks, recovery time and pain
  • extensive imaging and navigational equipment for precise instrument guidance
  • customized treatment plans based on research and best practices
  • strong, meaningful relationships with community primary care doctors

Learn More about GI Care at Nemours Children’s Hospital »

Your Child’s Pediatric IBD Team

Our gastroenterologists work together with you and your family, and also with a team of specialists, advanced practice nurses and physician’s assistants to provide comprehensive care. Depending on your child’s condition, your child’s team may also include:

Because of our award-winning electronic health record system, we can instantly consult with Nemours experts throughout Florida and at our sister hospital, Nemours/Alfred I. duPont Hospital for Children in Wilmington, Del., to pool our resources for the best care for your child no matter how complex the condition.

Inflammatory Bowel Disease (IBD) in Children

Inflammatory bowel disease (collectively known as Crohn’s disease and ulcerative colitis) causes inflammation (redness, ulcerations or swelling) in the intestinal tract. IBD symptoms in children are similar to many other pediatric GI conditions — which can sometimes cause a delay in diagnosis.

Left untreated, IBD can lead to complications such as anemia (from gastrointestinal bleeding), malnutrition (due to poor food absorption) and stunted growth. In severe cases, IBD can cause serious damage to the intestinal tract and colon. Our specialists are experts at recognizing the symptoms and finding effective treatment plans.

For your convenience, many of the same specialists you see at Nemours Children’s Hospital also offer care at Nemours Children’s Specialty Care locations in downtown Orlando, Lake Mary, Melbourne and Lakeland.

Advanced IBD Evaluation & Diagnostics at Nemours Children's Hospital

IBD may be the cause if your child is having recurring flare-ups (or bouts) of abdominal pain, blood in the stool, diarrhea, fever, vomiting and/or weight loss. Tests may include imaging studies, interventional radiology, blood tests and others to pinpoint what’s causing your child’s IBD, whether it’s Crohn’s disease or ulcerative colitis.

Diagnostic Tests and Procedures

Tests and procedures your doctor may order include:

  • blood tests (to identify anemia, inflammation or infection in the body)
  • stool sample (to look for the presence of infection or blood in the stool, or poop)
  • barium study/X-rays (involves drinking a thick liquid called barium that shows up white on X-ray images, to view parts of the intestine that can’t be reached in a colonoscopy and endoscopy)
  • computed tomography, or "CT" including 2-D and 3-D technology (to view cross-sectional images, called "slices," of organs, bones, blood vessels and soft tissues)
  • magnetic resonance imaging, or "MRI" and magnetic resonance enterography, or "MRE" (a special imaging test that allows us to see if the gastrointestinal tract is inflamed without exposure to radiation)
  • colonoscopy (a long, thin tube with a small camera called a "colonoscope" is inserted into the rectum to look for inflammation, ulcers or bleeding in the colon)
  • endoscopy, including esophagogastroduodenoscopy (a long, thin tube with a small camera called an "endocscope" is inserted through the mouth to view the esophagus, stomach and upper small intestine for signs of IBD)
  • biopsy (tissue samples taken during a colonoscopy and/or an endoscopy for further analysis)
  • wireless capsule endoscopy (sometimes called a "camera in a pill," this state-of-the-art procedure is a less invasive way to view parts of the small intestine that are difficult to see in other tests)

Managing IBD in Children

Inflammatory bowel disease can be very painful for children and adolescents — physically and emotionally. Once your child has an IBD diagnosis, our first goal is to alleviate and control your child’s symptoms as quickly as possible, usually through a short dose of powerful medications.

Once we relieve your child’s IBD symptoms, the next course of treatment focuses on managing the condition for fewer flare-ups using a combination of proven therapies that include nonsurgical and surgical options.

Prescription Medications

Certain prescription medications can manage flare-ups of IBD in children, including:

  • anti-inflammatory medicines to reduce abdominal pain and diarrhea
  • corticosteroids to reduce pain, fever and rectal bleeding
  • immune-suppressants to keep the immune system from attacking the body’s own tissue and to help control inflammation in the gastrointestinal tract

It may take time to get the right dosage and medicine combination. But with careful attention and follow-up with our experienced Nemours medical team, we’ll get your child’s IBD symptoms under control.

Nutritional Support

Although changing your child’s diet won’t "fix" IBD, nutrition plays a large role in treatment. Your medical care team might suggest nutritional changes or supplements to help:

  • lessen some of the symptoms during an IBD flare-up
  • reduce the affects of certain medications
  • make sure your child is getting the vitamins and minerals needed for healthy growth and development

The nutritionist/dietitian may accomplish this through diet plans, intravenous nutrition or tube feeding. Our team will work with you to create a plan specific to your child’s needs.

Surgery for Inflammatory Bowel Disease

The first line of treatment for IBD in children is almost always medication and nutritional support. If nonsurgical treatments don’t work or stop working, surgery can be an option, but not necessarily a cure. The decision to have surgery depends on many things — particularly the type of IBD your child has. Your medical team and your family will make the decision together after weighing all of the potential outcomes, risks and expectations.

If surgery is an option for your child, the procedures are different for Crohn’s disease and ulcerative colitis.

Crohn’s Disease

To treat Crohn’s disease, a surgeon can remove a damaged section of intestine. It’s important to note that because inflammation can occur anywhere — at any time — along the intestinal tract, removing one section of the bowel doesn’t keep the disease from returning in another. For this reason, and because of other complications, we do whatever we can to successfully treat Crohn’s before recommending surgery.

Ulcerative colitis

A surgeon can remove the colon and the rectal lining and perform a procedure called an "ileoanal pull-through." In this procedure, a pouch is made using the small bowel to collect stool in the pelvis that passes through the anus. About 20 percent of children with ulcerative colitis will need surgery at some point.

Our experienced pediatric surgeons at Nemours Children’s Hospital successfully perform GI procedures including state-of-the art minimally invasive surgical techniques.

Learn More About Pediatric Surgery at Nemours Children’s Hospital »

Behavioral Health for the Entire Family

From the start, our behavioral experts (psychologists and psychiatrists) make sure your child and family understand what’s happening throughout the entire care process and help you cope with the diagnosis and the affects of the disease and treatment. Psychological services may include cognitive behavioral therapy and/or psychotherapy (individual, group and family) to help your child and family adjust to treatment, manage pain, comply with taking medications and cope with depression and anxiety.

Learn More About Behavioral Health at Nemours Children’s Hospital »

Ongoing Treatment and Care for Your Child’s IBD

IBD in children is a chronic disease that requires ongoing follow-up and care. At Nemours Children’s Hospital, a big part of our IBD treatment involves educating your child and family about the condition, helping you find community resources and providing you with the tools necessary to successfully control this lifelong condition.

During follow-up visits, our team will continuously monitor your child for:

  • medication effectiveness
  • potential treatment side effects
  • healthy growth and development
  • physical and emotional well-being

And long before "aging out" of pediatric specialty care — and into the adult health system — we prepare teens with IBD to become responsible about managing their care. This means we help young people understand their diagnosis, treatments and other aspects involved with having a chronic medical condition so they can become healthy adults with IBD.

What to Expect When Your Child Needs Surgery

If your child needs surgery, you can trust the highly trained pediatric surgical team at Nemours Children’s Hospital. Our pediatric surgical specialists (surgeons, anesthesiologists, and nurses) understand what kids (and families) need, psychologically, and physically.

Because we truly believe in family-centered care, we invite you (one parent or guardian) to the operating room to be with your child until just after sedation. We also provide our families with a peaceful place to wait without leaving the surgical floor, in our beautiful rooftop garden.

What Happens During the Presurgical Visit

Before any type of surgical procedure, your child will require a presurgical visit. At this visit, you and your child will meet your surgeon, discuss the diagnosis and details of the operation, and get answers to all of your questions or concerns. You may also meet with an anesthesiologist if necessary.

We’ll call you before your visit so you'll know what to bring, like:
  • any medications your child is currently taking
  • your ID
  • insurance and/or Medicaid cards
  • proof of guardianship, if applicable

When you arrive for a presurgical visit, go directly to the presurgical clinic area on the second floor. There, the patient service representative will review and verify your information and insurance. You will also complete a medical history form.

A nurse practitioner will assist with the visit and order any necessary tests. She or he will also inform you about what to expect the day of the surgery, including:

  • how your family will be kept updated during the procedure
  • when you can expect the surgeon to come out and speak with you
  • when you can join your child in the recovery room

EmmiKids Programs: Online Educational Videos for Families

At the end of the presurgical visit, you and your child may have the option to view an online educational program from EmmiKids about the upcoming surgical procedure and the anesthesia. You can watch these programs at the hospital or you may choose to watch them at home or in your local library. We’ll give you an access code to view the program(s).

Learn More About EmmiKids at Nemours »

How to Prepare the Day Before Surgery

The day before surgery, the surgical services staff will call you to check on your child’s health status, give you a time of arrival for the next day, update you on feeding instructions, and answer any questions.

General Feeding/Drinking Instructions

No food, milk, formula or breast milk may be consumed after a specific time (provided by your surgeon) on the day of the surgery. Your child may only have apple juice, electrolyte replenishing/sports drinks or water up to four hours prior to scheduled surgery time. These are considered “clear liquids.” We ask that you do not substitute other juices. Special Note: Infants 11 months or younger may have breast milk, but only up to six hours prior to surgery.

Suggested items to pack for your child:
  • empty baby bottle or cup
  • special feeding or suction equipment (if needed)
  • bathrobe
  • slippers
  • socks
  • favorite stuffed animal and/or blanket
  • loose-fitting clothes
  • eyeglasses (if needed)
Please remove the following items from your child:
  • all jewelry — including earrings
  • fingernail polish
  • hair accessories
  • contact lenses
  • retainers
What Happens the Day of Surgery

On the day of surgery, we ask that you be here at the time instructed so your child’s surgery won’t be delayed. We encourage you to allow extra time in your travel plans in case of traffic or unexpected delays.

Parking and Where to Go in the Hospital

When you arrive at the hospital on the day of surgery, you can use our complimentary valet parking, or you can self-park in the garage near the outpatient entrance. Valet services are located at the outpatient entrance and are available Monday through Friday, from 8 a.m. to 6 p.m.

Once inside the hospital, go straight to the surgical services desk on the second floor. There, the patient service representative will greet you, review your child’s information and insurance status, and check your child in. We’ll give you a case number, as well as a pamphlet with instructions about where to go and what to do during the waiting period. We’ll ask your child to change into a hospital gown and will then check vital signs: temperature, pulse, blood pressure and weight.

Just Before Surgery

While waiting for surgery, your child can play in our colorful, relaxing surgical commons area featuring many interactive games and activities to help reduce anxiety and pass the time. We also have a “toy store” where your child or teen can choose from a variety of gifts like stuffed animals, ball caps, and electronic items to keep.

When it’s close to the time for surgery, we’ll escort you and your child to an exam room, where you’ll meet the anesthesiologist and operating room nurse. As part of our unique family-centered model of care, our anesthesiologists may allow one parent to accompany your child to the operating room and stay until just after the anesthesia is administered.

During and Just After Surgery

You’ll be asked to stay in the surgical waiting area while your child is in the operating room. A nurse liaison or a trained volunteer will keep you updated during the procedure. If you need to leave the area for any reason, please inform a staff member.

After surgery, your child’s surgeon will come out to discuss the procedure and answer any questions you may have. We’ll inform you as soon as you can join your child in the recovery area or “wake up” room.

Patients must be fully awake before discharge. You should plan to stay in the recovery area for at least one hour (or longer, depending on your child). It’s very common for children to experience nausea and/or vomiting just after surgery, and also have a flushed face. We’ll offer clear liquids to drink when your child is ready. If your child will be admitted to the hospital after surgery, you’ll be given instructions ahead of time.

Once your child is ready for discharge, a nurse will review instructions with you regarding diet, wound care, medication, activity, and when your child should return to see the doctor. You may also be given prescriptions.

What to Expect During and Just After Surgery

You’ll be asked to stay in the surgical waiting area while your child is in the operating room. A nurse liaison or a trained volunteer will keep you updated during the procedure. If you need to leave the area for any reason, please inform a staff member.

After surgery, your child’s surgeon will come out to discuss the procedure and answer any questions you may have. We’ll inform you as soon as you can join your child in the recovery area or “wake up” room.

Patients must be fully awake before discharge. You should plan to stay in the recovery area for at least one hour (or longer, depending on your child). It’s very common for children to experience nausea and/or vomiting just after surgery, and also have a flushed face. We’ll offer clear liquids to drink when your child is ready. If your child will be admitted to the hospital after surgery, you’ll be given instructions ahead of time.

Once your child is ready for discharge, a nurse will review instructions with you regarding diet, wound care, medication, activity, and when your child should return to see the doctor. You may also be given prescriptions.

What to Expect the Day After Surgery

Make sure your child rests as much as possible after surgery. Temporary nausea or vomiting is quite common after discharge. But if your child experiences any of the symptoms below, call your surgeon or the nursing staff immediately:

  • a fever of more than 101 degrees Fahrenheit
  • persistent nausea or vomiting
  • severe pain that’s not relieved by prescribed medication
  • excessive bleeding from an incision

A nurse will call to check on your child’s recovery and to address any questions or concerns. We’re committed to making your child’s surgical visit as pleasant and safe as possible – before, during and after the procedure.

Managing Pain After Surgery: Nemours Pain Management Program

If your child is experiencing postsurgical pain, we can help. Nemours Children’s Hospital has one of the only pediatric pain management programs in the country that provides holistic, whole-child — and whole family — healing for children and teens experiencing acute (temporary) or chronic (ongoing) pain. Our integrated program is led by a world-renowned pediatric anesthesiologist who is also board-certified in pain management. We focus on relieving the physical, mental, and emotional aspects of pain using a variety of therapies in an outpatient or inpatient (day stay hospital program) setting.

Learn More About Pediatric Pain Management at Nemours Children’s Hospital »

A Hospital Designed by Families, for Families

At Nemours Children’s Hospital, family-centered care is at the heart of everything we do. In fact, families helped shape the unique amenities and convenient services that make our hospital like no other in the region.

If Your Child Needs to Stay Overnight in Our Hospital

You’ll feel right at home in one of our private patient rooms designed with input from families who know what it’s like to have a child in the hospital.

Our large, comfortable, single-patient rooms have sleeping accommodations for two parents, a private bathroom, wireless Internet access, connections for DVD players and game systems, and two flat-screen TVs.

Other in-room features include:
  • full floor-to-ceiling windows for natural light
  • refrigerator for family meals and snacks
  • wardrobe storage for personal items and a hotel-style safe
  • GetWellNetwork interactive television (uniquely based on your child’s age, medical condition and more) and allows your child to watch TV, surf the Web, check e-mail, play music and games, and learn about your Nemours health care team.

Our “hospital within a garden” setting features many places for you and your family to go for fresh air and relaxation, including a one-acre interactive sensory discovery garden or one of our rooftop gardens on the second and fourth floors.

We have many more comforts and amenities such as:
  • complimentary valet and parking
  • kid-friendly commons areas for siblings
  • café and coffee shop
  • nondenominational chapel
  • concierge services

Learn More About Nemours Children’s Hospital »

Advanced Pediatric Medical Imaging Services Available Onsite

If your child needs medical imaging, we offer some of the area’s most advanced pediatric radiology services here on campus at Nemours
Children’s Hospital.

Our unique services include:
  • interventional radiology: Our team of experts uses image guidance to diagnose and treat diseases and tumors throughout the body. Certain conditions that previously required open surgery can now be treated by Nemours pediatric interventional radiologists. We are very fortunate to have the only dual-trained pediatric diagnostic and interventional radiologist in the state.
  • neuroradiological or cardiovascular imaging, and fetal MRI (magnetic resonance imaging): Our subspecialty-trained pediatric radiologists see children with complex conditions who require this highly specialized imaging.
  • Central Florida’s only 256-slice Brilliance iCT Scanner: We are one of only a handful of children’s hospitals in the country to have this latest generation CAT (or CT) scanner that scans faster than most machines and produces excellent images in a much shorter time with much less radiation exposure for the child.

Our team of board-certified pediatric radiologists and pediatric radiologic technologists are experts in the safe medical imaging of children of every age, even newborns.

We have also pledged our commitment to the “Image Gently” campaign of the Alliance for Radiation Safety in Pediatric Imaging, which is increasing awareness of the opportunities to promote radiation protection in the imaging of children.

Learn More About Medical Imaging at Nemours Children's Hospital »

Family-Centered Care Means We're Here for You

At Nemours, we want to hear your concerns and share with you everything we can about your child's condition and treatment. If English is not your first language, we'll make sure you understand what to expect — in your language.

Learn More About Interpreter Services at Nemours Children’s Hospital »

With Your Family From Clinic or Hospital to Home: KidsTRACK

If your child has a complex or chronic condition we encourage you to take advantage of KidsTRACK, a unique service of Nemours Children’s Hospital. Located on the first floor of our hospital, KidsTRACK is designed to help families by providing expert assistance and information on all aspects of your child’s care, even before you leave our hospital or clinic.

A KidsTRACK care coordinator is available during every step of diagnosis, treatment and healing — helping your family make a smooth transition from Nemours Children's Hospital to home. Your coordinator works alongside the nursing/case managers in our subspecialty areas and acts as a single point of contact connecting you to medical and community resources.

Simply ask your physician for a referral to KidsTRACK
or call (407) 650-7715.

Learn More About KidsTRACK at Nemours Children's Hospital »