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Inflammatory Bowel Disease

Overview

Inflammatory bowel disease (IBD) is a chronic immune-mediated disorder of the digestive tract in which the body inappropriately attacks its own intestines. Symptoms vary depending on the location and extent of inflamed bowel, but usually include chronic diarrhea that is sometimes bloody, abdominal pain, and weight loss. Extra-intestinal conditions may involve the mouth, skin, joints, liver, or eyes. IBD has the potential to affect nutrition, growth, and puberty.

The term IBD covers 2 disease entities that can have significant clinical overlap: ulcerative colitis (UC), in which inflammation affects mostly the large intestine, and Crohn’s disease (CD), where any portion of the digestive tract from mouth to anus can be affected. Children with IBD who do not fit either category (≈15%) are diagnosed with “indeterminate colitis” or inflammatory bowel disease unclassified type (IBD-U).

Other Names & Coding

Crohn’s disease
Indeterminate colitis
Regional enteritis
Ulcerative colitis
ICD-10 coding

K50, crohn's disease [regional enteritis]

K51, ulcerative colitis

K52, other and unspecified noninfective gastroenteritis and colitis

Multiple digits indicating primary location of inflammation can be used with codes K50, K51, and K52. See ICD-10 for Noninfective Enteritis and Colitis for coding details.

Prevalence

The prevalence of CD and UC in children younger than 20 years is 1:2,326 and 1:3,571, respectively. [Kappelman: 2007] IBD peaks around age 20 and again at age 60; nearly 25% of patients with IBD present before the age of 20. [Wong: 2008]

Genetics

The DNA of patients with IBD has been extensively studied; while genetics is sometimes responsible for developing the condition, about 85% of IBD cases are caused by environmental factors.

Prognosis

The inability to absorb adequate calories and nutrients can lead to failure to thrive, growth retardation, abnormal sexual maturation, and vitamin and micronutrient deficiencies. Chronic inflammation leads to anemia and, in CD, to abscess, stricture, and fistula formation. Both CD and UC carry an increased risk for colorectal cancers, particularly when disease has been present for many years. Significant limitations in school, sports, and other activities occur with flares or with poorly controlled disease. The social stigma associated with fecal urgency or surgical ostomy can be extreme. Some children develop comorbid anxiety and depression.

Practice Guidelines

Turner D, Levine A, Escher JC, Griffiths AM, Russell RK, Dignass A, Dias JA, Bronsky J, Braegger CP, Cucchiara S, de Ridder L, Fagerberg UL, Hussey S, Hugot JP, Kolacek S, Kolho KL, Lionetti P, Paerregaard A, Potapov A, Rintala R, Serban DE, Staiano A, Sweeny B, Veerman G, Veres G, Wilson DC, Ruemmele FM.
Management of pediatric ulcerative colitis: joint ECCO and ESPGHAN evidence-based consensus guidelines.
J Pediatr Gastroenterol Nutr. 2012;55(3):340-61. PubMed abstract

Ruemmele FM, Veres G, Kolho KL, Griffiths A, Levine A, Escher JC, Amil Dias J, Barabino A, Braegger CP, Bronsky J, Buderus S, Martín-de-Carpi J, De Ridder L, Fagerberg UL, Hugot JP, Kierkus J, Kolacek S, Koletzko S, Lionetti P, Miele E, Navas López VM, Paerregaard A, Russell RK, Serban DE, Shaoul R, Van Rheenen P, Veereman G, Weiss B, Wilson D, Dignass A, Eliakim A, Winter H, Turner D.
Consensus guidelines of ECCO/ESPGHAN on the medical management of pediatric Crohn's disease.
J Crohns Colitis. 2014;8(10):1179-207. PubMed abstract / Full Text

Critch J, Day AS, Otley A, King-Moore C, Teitelbaum JE, Shashidhar H.
Use of enteral nutrition for the control of intestinal inflammation in pediatric Crohn disease.
J Pediatr Gastroenterol Nutr. 2012;54(2):298-305. PubMed abstract

Roles of the Medical Home

The medical home should:
  • Monitor for signs of ongoing disease and exacerbation.
  • Monitor for side effects of medications.
  • Help ensure adequate catch-up growth.
  • Monitor for appropriate pubertal development.
  • Screen for physical findings of vitamin and mineral deficiencies.
  • Screen for comorbid depression and anxiety.
  • Evaluate illnesses in patients on immune-modulating medications.
  • Work with the patient and family to encourage therapeutic compliance.
  • Perform routine health screening.
  • Assist family with eventual transition to adult care.
Ongoing collaboration with pediatric gastroenterology may optimize outcomes for patients. Follow-up with the subspecialist varies from patient to patient and with response to medications, but generally occurs every 1–2 months following initial diagnosis and every 6–12 months in patients with remission.
Development of a 504 Plan may include immediate/discreet access to bathroom, stop the clock testing, access to healthy snacks and beverages, plans for unintended late arrivals to school, and alternative activities for physical education class. Education & Schools provides tips for collaborting with school personnel to help ensure appropriate education-related services.

Clinical Assessment

Pearls & Alerts for Assessment

Most abdominal pain in children is not IBD

The child with gassy abdominal pains and bloating, nonfocal periumbilical pain, no diarrhea, no fecal urgency, and normal growth is unlikely to have IBD, especially if routine bloodwork, including an inflammatory marker (ESR or CRP), is normal. Nearly all of these patients have constipation and/or functional abdominal pain. Most hematochezia in children is from constipation.

Screening

For Complications

Patients on immunosuppressive medications should have bloodwork monitored by their gastroenterologist no less than every 3 months to look for liver damage, pancreatitis, low white blood cell count, and other complications of immunosuppression.

Presentations

Presentation depends, in part, upon the location and extent of the inflamed bowel. Inflammation in CD may occur anywhere along the GI tract. Most individuals with CD have inflammation in the distal ileum and cecum (~70%). UC can have variable severity. By definition, the inflammation in those with UC always involves only the large bowel. Either disorder can have associated extraintestinal symptoms. In both conditions, the inflammation manifests primarily as abdominal pain and diarrhea. For the purposes of this review, patient presentations will be divided into mild intestinal, moderate/severe intestinal, and primarily extraintestinal patterns.

Mild intestinal presentation: Approximately 60% of children with IBD present, typically in an outpatient setting, with mild colonic and distal small bowel symptoms, and chronic diarrhea, cramps, and abdominal pains. Mild blood in the stools is more characteristic of UC, but also present in ~30% of CD. Children with mild presentation have normal vital signs, look well, and have unremarkable physical exams.

Moderate/severe intestinal presentation: Approximately 30% of children with IBD present with moderate or severe colonic and distal small bowel symptoms that may include frequent and/or grossly bloody stools, cramps, fecal urgency, fevers, weight loss, and some degree of general systemic illness. Vital sign instability, dehydration, anemia, or the need for IV narcotic pain control may lead to hospitalization. A distended or tender abdomen, particularly with any signs of peritonitis, requires urgent referral for imaging and evaluation by the most experienced team available—ideally, a tertiary care center with a pediatric surgeon. Complications of IBD, such as perforation, obstructive strictures, and toxic megacolon, are surgical emergencies.

Primarily extraintestinal presentation: About 10% of children with IBD present with extracolonic symptoms. The most common is growth failure. IBD deserves consideration in an appropriately aged patient with otherwise idiopathic failure to thrive (low weight for age with or without low height for age, or low weight for height). A pattern of chronic nausea, vomiting, and anorexia is seen in CD with stomach or proximal small bowel involvement. Some children with CD present with just perianal disease. Additional symptoms may include any combination of fatigue, malaise, monoarticular arthritis or arthralgia, recurrent oral aphthous ulceration, erythema nodosum, pyoderma gangrenosum, anemia, hepatitis, and digital clubbing.

Diagnostic Criteria

Diagnosis is usually made by a pediatric gastroenterologist and pathologist. It is based on endoscopic and histologic data, with a suggestive history and physical exam, and after exclusion of infectious etiology. Definitive diagnosis requires all 3 of the following:
  1. Clinical symptoms (diarrhea, rectal bleeding, abdominal pain, weight loss or growth disturbance, complicated perianal disease, and/or fevers)
  2. Appropriate time course (symptoms on 2 or more occasions separated by at least 8 weeks, or ongoing symptoms for at least 6 weeks)
  3. Objective evidence of inflammation on endoscopy, radiology, and/or histology
Abnormal CBC, ESR, and albumin can suggest need for further workup, but cannot alone make or exclude the diagnosis (see Laboratory Testing, below). The best radiographic studies are either CT enteroclysis, which requires NJ tube placement for contrast infusion directly into the small bowel, or MRI of the small bowel, which requires rapid ingestion of large volumes of oral contrast. Capsule endoscopy, in which the patient swallows a camera pill that can image the entire GI tract, is available at some centers. More complicated laboratory workup (i.e., ANCA and ASCA antibody panels) are used only in select cases to distinguish between UC and CD. They lack sufficient accuracy to belong in the routine diagnostic workup, are quite expensive, and should only be ordered by specialists. [Wong: 2008]

Differential Diagnosis

Acute symptoms: Infection is the primary alternative diagnosis, particularly when symptoms present acutely in an otherwise healthy child who has no growth disturbance. Since IBD and acute infection cannot be distinguished by clinical criteria alone, stool studies should be performed to rule out infection prior to initiation of immunosuppressive medications or further (and more expensive) workups.
  • Alternative considerations: Bacteria (Clostridium difficile, Salmonella, Shigella. Campylobacter, Yersinia, Aeromonas, Enterohemorrhagic E. coli, and Aeromonas) and protozoa (including Entamoeba histolytica, Blastocystis hominis, Cryptosporidium and Giardia species), which can present similarly to IBD.
Abdominal pain: Recurrent or chronic abdominal pain is common in school-age children; non-organic causes predominate and include the spectrum of functional abdominal pain disorders. IBD almost never presents as pain without diarrhea or growth failure. The child with gassy abdominal pains and bloating, or with primarily periumbilical pain, who has no diarrhea, no fecal urgency, and normal growth is unlikely to have IBD. A normal CBC, ESR, and CMP for an otherwise well child with chronic abdominal pain nearly always excludes IBD.
  • Alternative considerations: irritable bowel syndrome, constipation, and celiac sprue
Rectal bleeding: Chronic constipation is a likely source of mild intermittent rectal bleeding. Hematochezia or melena can arise from intestinal polyps or a Meckel diverticulum; however, this is usually painless bleeding. Henoch-Schonlein purpura and hemolytic uremic syndrome can cause cramping, abdominal pain, and blood in the stool, though most often it is acute in onset and has other features atypical of IBD. Intestinal lymphoma in its earlier stages may mimic IBD.

Growth failure: Although unusual, the first presentation of IBD may be growth failure alone. The differential diagnosis for a child presenting primarily with poor growth is quite broad.
  • Alternative considerations: celiac disease, thyroid dysfunction, cystic fibrosis, giardia infection, anorexia or other eating disorders, adrenal insufficiency, chronic kidney disease, and malignancy can manifest in this way.

Comorbid & Secondary Conditions

Primary sclerosing cholangitis is liver inflammation and scarring that occurs in >10% of Utah patients with ulcerative colitis. [Deneau: 2013] Other conditions are less common, including arthritis, uveitis, erythema nodosum, pyoderma gangrenosum, lymphedema, and venous thromboses.

History & Examination

Diagnosis usually occurs between the ages of 10–20 years (less likely below age 10; rarely occurs below age 5). These symptoms should particularly prompt consideration of IBD:
  • Daily diarrhea
  • Nighttime stooling
  • Fecal urgency or tenesmus
  • Persistent bloody stools
  • Poor weight gain or linear growth failure
  • Right lower quadrant tenderness on exam

Current & Past Medical History

Current and past history:
  • Fecal urgency, especially if child wakes from sleep to have an urgent bowel movement
  • Blood or mucus in stools (after constipation has been excluded)
  • Growth disturbance
  • Pubertal delay
  • Fevers, anorexia, malaise, fatigue (signs of systemic inflammation)
  • Recurrent oral or genital ulcerations (extraintestinal manifestations)
  • Arthritis, especially monoarticular, large joint, and primarily early-morning (extraintestinal manifestations)
  • Rashes (pyoderma gangrenosum or erythema nodosum)
  • Eye inflammation (anterior uveitis)
Ask about any side effects of medications. Risk factors for developing IBD may include a history of too many antibiotic prescriptions in youth, whether a patient was delivered via cesarean or vaginal method, chemicals and additives to foods, and the types of bacteria that live inside the gut.

Family History

Ask about family history; affected relatives increase the likelihood of IBD.

Developmental & Educational Progress

Monitor school progress, which may reflect symptom control—those who miss more than a little school due to exacerbations may have difficulty keeping up. Behavior problems may reflect depression or problems with peers (perhaps due to symptom manifestations at school).

Maturational Progress

Delayed pubertal development can result from chronic inflammation.

Social & Family Functioning

Ask about support from family members.

Physical Exam

General

Monitor for fecal urgency, nighttime stooling, abnormal stools, fevers, malaise, fatigue, oral or genital ulcers, symptoms of arthritis, and rashes.

Vital Signs

Monitor BP in children on steroids.

Growth Parameters

Monitor height, weight, and weight for height or BMI: Low weight for age, with or without low height for age, or a low weight for height may reflect growth failure caused by IBD. Chart height, weight, and weight for height or BMI every 6 months. Watch for excessive weight gain in children taking steroids. Delayed pubertal development may reflect nutritional deficiency or chronic inflammation.

Skin

Check for deep ulcerative lesions (pyoderma gangrenosum) or erythema and subcutaneous nodularity, often most prominent on the pretibial area (erythema nodosum). Also, check for striae if taking steroids.

HEENT/Oral

Check mouth/oropharynx for ulcerations, suggesting CD; cracked lips; beefy macroglossia, suggesting vitamin/mineral deficiency associated with malnutrition; and tooth enamel erosion, suggesting self-induced vomiting that might be seen in anorexia nervosa or another condition. Pale conjunctivae may reflect anemia.

Heart

New systolic murmurs may reflect anemia.

Abdomen

Expect a normal exam with mild disease. RLQ tenderness can be a specific feature of CD with proximal colon or distal rectal involvement, whereas LLQ pain is more likely due to rectosigmoid inflammation, often associated with constipation. Isolated epigastric pain in CD is rare. RUQ pain is also unlikely in IBD and may be suggestive of gallbladder disease or functional dyspepsia. Peritoneal signs can be suggestive of severe disease and complication, such as perforation.

Anal skin tags (especially off the sagittal plane), fissures, fistulae, ulcers, or generalized inflammation suggests CD. Visual inspection of the anus is frequently skipped, but it is critical to perform: 1:4 patients with CD has rectal involvement that may be isolated, or that may be an initial manifestation of more diffuse disease. Abdominal tenderness may reflect active disease.

Extremities/Musculoskeletal

Associated findings include clubbing (suggesting chronic inflammation), arthritis (monoarticular, large joint, nonerosive), brittle nails or spoon nails (suggesting vitamin/mineral deficiency associated with malnutrition), and finger ulcerations (suggesting self-induced vomiting, which may be seen in individuals with anorexia nervosa).

Testing

IBD is unlikely in a patient who has a normal ESR, CBC, and albumin presenting only with chronic periumbilical abdominal pain.

Laboratory Testing

Exclusion of infectious etiology is the first step in the workup. Infection should be reliably excluded before embarking on a more costly workup and initiation of immunosuppressant medications. Clostridium difficile toxin assay, routine stool culture, and a microscopic examination for ova and parasites are generally sufficient in covering the most common organisms with presentations similar to IBD. More cultures may be indicated if there is supportive history.

Current serologies, such as the Prometheus IBD-7 panel, lack the sensitivity and specificity to make them useful to distinguish among IBD and other disorders. Antibody panels such as ANCA/ASCA are expensive, lack sufficient positive and negative predictive value, and are not recommended.

In children with IBD, hemoglobin and ESR are the most likely routine blood tests to be abnormal. Elevated white count, and high or low platelets, can be seen. Serum albumin (half-life is about 3 weeks) may be low as a result of prolonged inflammation. A subset of patients with mild IBD will have normal labs.

Imaging

Imaging of the small bowel may identify lesions suggestive of CD. The best radiographic studies are either CT enteroclysis, which requires NJ tube placement for contrast infusion directly into the small bowel, or MRI of the small bowel, which requires rapid ingestion of large volumes of oral contrast. Capsule endoscopy, in which the patient swallows a camera pill that can image the entire GI tract, is available at some centers.

Specialty Collaborations & Other Services

Pediatric Gastroenterology (see Services below for local providers)

Refer to confirm the diagnosis and to assist with management.

Nutrition Assessment Services (see Services below for local providers)

Periodic visits may help with surveillance and prevention of nutritional deficiencies.

Treatment & Management

Pearls & Alerts for Treatment & Management

Test for tuberculosis before use of biologic agents

Children should be tested for tuberculosis prior to receiving biologic agents (Infliximab and adalimumab monoclonal antibodies), and they should be monitored for opportunistic infections.

Live virus vaccinations

No data supports avoidance of live virus vaccines in children with IBD, and a recent study suggests that the varicella vaccine does not appear to cause problems, although they should be used with caution. [Lu: 2010] However, live virus vaccines cannot be given during, or within 8 weeks of, starting immunosuppression with adalimumab or infliximab. These include nasal spray forms of the influenza vaccine, varicella, and MMR. Other vaccines on the standard immunization schedule can be safely administered.

Surgical emergencies

Complications of IBD, such as perforation, obstructive strictures, and toxic megacolon, are surgical emergencies.

How should common problems be managed differently in children with Inflammatory Bowel Disease?

Viral Infections

Most cases of viral respiratory and gastrointestinal infections pass normally in children with IBD, even in patients on immunosuppressive medications. Yet, care must be taken with chicken pox or zoster rash exposures in patients on biologic medications: Some patients require prophylactic antiviral medicines. Care must also be taken with EBV (mono) infections, which can evolve into serious systemic inflammatory responses in the spectrum of hemophagocytic lymphohistiocytosis.

Gastroenterologist should be contacted immediately for exposure to virus, and patients on immunosuppression should be treated with antivirals for documented positive tests of influenza viruses.

Bacterial Infections

Patients on immunosuppression who develop a chronic cough should be worked up for tuberculosis, histoplasmosis, coccidiomycosis, and blastomycosis depending on exposure history.

Over the Counter Medications

Non-steroidal anti-inflammatory medicines (NSAIDs) like ibuprofen (Advil, Motrin), should be avoided in people with IBD since they may cause disease flares.

Systems

Gastro-Intestinal & Bowel Function

Therapy goals are to induce and then maintain disease remission. The aim is to decrease inflammation (and thus decrease frequency of stooling, pain, and hematochezia), restore adequate nutrition, and avoid need for long-term corticosteroids. This is done with a combination of nutritional regimens, therapies (aminosalicylates, antibiotics, and probiotics), and immunosuppression using corticosteroids, azathioprine, or biologic agents. Various formulations of medication target different locations of inflammation in the bowel; delayed release capsules deliver topical steroid to the distal small bowel and enemas or suppositories are for rectal inflammation. Attempts to wean from steroids or immunosuppressives when disease severity permits.

Specific Therapies
  • Biologic agents – Infliximab and adalimumab are expensive monoclonal antibodies directed against tumor necrosis factor and are used in moderate and severe disease that is refractory to other medications. These agents are associated with a risk for lymphoproliferative disorders and opportunistic infections. All patients need screening for tuberculosis prior to initiation of therapy. Biologic agents are probably the most effective medicines for all types of IBD, and the trend in treating IBD is to get patients who are not in remission with other therapies onto biologic medicines as soon as possible.
  • Aminosalicylates – Sulfasalazine and mesalamine are not systemically absorbed and, when taken orally or rectally, provide topical anti-inflammatory effects at the site of diseased bowel. They can induce remission in mild-moderate UC. Sulfa products may cause dose-dependent adverse reactions, but non-sulfa alternatives are much more expensive. Sulfasalazine is the only 5-ASA product that is available as a suspension.
  • Antibiotics – Ciprofloxacin and/or metronidazole are effective primarily in CD, especially with perianal involvement. In addition to elimination of some bacteria to which the intestinal immune system is inappropriately responding, they may have anti-inflammatory and antioxidant properties.
  • Corticosteroids – These provide potent systemic anti-inflammatory effects and can induce remission in moderate or severe IBD, though at the cost of various sequelae of long-term use (Cushing syndrome and hypertension). Steroids are not a long-term solution for IBD; patients “stuck” on daily doses of steroids, or who require more than one prolonged taper of steroids, should be stepped up to a stronger class of immunosuppression.
  • Probiotics – Specific combinations of multiple bacterial strains, such as VSL-3, may be effective in helping to induce remission in those with UC, but they are not effective monotherapy. They are available online without a prescription, but are expensive ($150-$300 monthly, depending on dose).
  • Azathioprine/6-mercaptopurine – These immunosuppressants are useful in combination with steroids to induce remission, and then as monotherapy after steroid taper. Patients are followed for bone marrow suppression and hepatotoxicity. Idiosyncratic pancreatitis can occur.
  • New agents – IBD is a relatively common adult gastrointestinal problem, and quite a bit of money is directed at developing new drugs. As of now, these medicines are at least several years away from widespread, safe pediatric use, but there is hope for newer, less-toxic agents.

Specialty Collaborations & Other Services

Pediatric Gastroenterology (see Services below for local providers)

Timing of visits will depend on disease severity and may be needed every 1–2 months while starting therapy, decreasing to every 6–12 months for children in remission.

Surgery

As a last resort, surgery to remove diseased portions of the bowel is an option. There are few randomized, controlled trials of medical or surgical therapies in the pediatric population, and much of what is done in children is extrapolated from the adult literature. Removal of the entire colon can control symptoms of UC and is indicated in refractory disease or with complications like uncontrolled hemorrhage, but leaves the patient either with an ileostomy (with consequent cares and lifestyle changes), or an internal ileal pouch with anal anastamosis (that still often requires the patient to stool 5–7 times a day, or more). Many patients eventually elect to have surgery as the risk of colon cancer increases the longer the disease has been present. Surgery is not curative for CD, since any portion of the GI tract can be involved. Which children will need surgery is not well understood; previous studies have shown that approximately half of CD patients will require a surgical procedure at some point for complications like abscess, fistula, or occasionally for intractable symptoms originating from a specific bowel segment, but a recent study suggests the risk is about 20%. [Schaefer: 2010] Early and aggressive use of biologic agents may be altering the natural history of IBD, allowing more patients to go without surgeries.

Specialty Collaborations & Other Services

General Pediatric Surgery (see Services below for local providers)

Referral may be necessary if there is an insufficient response to medical therapy.

Nutrition/Growth/Bone

Nutritional support helps prevent and correct malnutrition, promote growth and development including pubertal development, and prevent osteoporosis, which is especially important in children who are frequently on steroids. Although nutritional deficits are often observed in children with IBD, those with CD are at greater risk for nutritional deficiencies. [El-Matary: 2010] Iron deficiency anemia, vitamin D deficiency, folic acid, vitamin B12, and micronutrient deficiency, and osteoporosis are common problems. Bone mineral density is often found to be low. Because children with IBD may be underweight or overweight, it is important that weight alone is not the primary factor used to determine nutritional adequacy. [Wiskin: 2010] [Conklin: 2010]

Specialty Collaborations & Other Services

Nutrition Assessment Services (see Services below for local providers)

Routine visits may help prevent nutritional deficiencies in at-risk children.

Mental Health/Behavior

Children and adolescents with IBD may experience anxiety and depression due to chronic symptoms. The medical home clinician should monitor mental health during well-child and acute-care visits. Noncompliance with chronic medications may be a problem for adolescents with IBD and should be considered as a potential explanation for renewed symptoms. [Schurman: 2010] Cognitive therapy, relaxation techniques, and ensuring that children are receiving adequate support in school, especially when there are frequent absences, can be helpful. [Szigethy: 2010]

Specialty Collaborations & Other Services

Developmental - Behavioral Pediatrics (see Services below for local providers)

Counseling can help children and teens deal more effectively with the issues of living with a chronic disease.

Complementary & Alternative Medicine

No alternative treatment for IBD treats the underlying disease process or controls inflammation in a way that prevents future infections, surgeries, and complications. Some therapies are useful to help manage symptoms, but at this stage in our knowledge of the complex immune system defects in IBD, they have no role in the main management of the disease. Complementary and alternative therapies targeted at general well-being, stress relief, anxiety reduction, and pain control may be beneficial in any patient with chronic illness. There is no contraindication to trying breathing exercises, biofeedback, acupuncture, aromatherapy, and so on. Peppermint oil supplements may help nausea. As with all conditions, it is best for the patient and family to work with the medical team and keep them informed of complementary therapy attempts, especially prior to their initiation.

Issues Related to Inflammatory Bowel Disease

Calcium and Vitamin D
No Related Issues were found for this diagnosis.

Ask the Specialist

Can NSAIDs be used in IBD patients?

There is a theoretical risk of exacerbating intestinal inflammation with chronic, or even acute, NSAID use. We tell all patients to avoid these drugs and use acetaminophen instead.

Which vaccinations are contraindicated in IBD patients?

Live virus vaccines cannot be given during, or within 8 weeks of, starting immunosuppression with Humira (adalimumab) or Remicade (infliximab). These include nasal spray forms of the influenza vaccine, varicella, and MMR. Other vaccines on the standard immunization schedule can be safely administered at any time.

How do I manage a fever in an immunosuppressed patient?

Subacute fevers associated with symptoms of a viral upper respiratory infection, gastroenteritis, or a general viral syndrome are generally benign and do not need extensive workup. Fevers lasting longer than 5-7 days, especially those associated with chronic cough, bone pain, or chickenpox, and especially in patients on biologic agents, should be evaluated semi-urgently by the patient's gastroenterologist to exclude opportunistic infection or malignancy.

Resources for Clinicians

On the Web

Inflammatory Bowel Disease (OMIM)
Extensive review of literature that provides technical information on genetic disorders; Online Mendelian Inheritance in Man site, hosted by Johns Hopkins University.

Helpful Articles

PubMed search for inflammatory bowel diseases in children, last 2 years.

Fell JM.
Update of the management of inflammatory bowel disease.
Arch Dis Child. 2012;97(1):78-83. PubMed abstract / Full Text

Hommel KA, Greenley RN, Maddux MH, Gray WN, Mackner LM.
Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.
J Pediatr Gastroenterol Nutr. 2013;57(2):250-7. PubMed abstract / Full Text

Leung Y, Heyman MB, Mahadevan U.
Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist.
Inflamm Bowel Dis. 2011;17(10):2169-73. PubMed abstract / Full Text

Clinical Tools

Letters of Medical Necessity

Appeal Letters (CCFA)
Templates for requesting school accommodations and appealing denials of funding for medications and procedures; Crohn's & Colitis Foundation of America.

Patient Education & Instructions

Parents' Guide to Inflammatory Bowel Disease (CCFA)
Provides information about diagnosis and treatment, helpful tips for lifestyle changes, and resources for emotional support; Crohn's and Colitis Foundation of America.

Resources for Patients & Families

Inflammatory Bowel Disease

Information on the Web

IBD & Me Activity Book (CCFA)
Contains cartoons, games, and activities that help children learn about inflammatory bowel disease; Crohn's and Colitis Foundation of America.

A Guide for Teachers to Inflammatory Bowel Disease (CCFA)
Information for school personnel about the diagnosis, sports participation, and planning for potential school absences; Crohn's and Colitis Foundation of America.

Ulcerative Colitis (MedlinePlus)
Diagnosis and management information; sponsored by the U.S. National Library of Medicine.

Crohn's Disease (MedlinePlus)
Diagnosis and management information; sponsored by the U.S. National Library of Medicine.

Inflammatory Bowel Disease (KidsHealth.com)
Family-focused information about IBD; from the Nemours Foundation.

Caring for your Child with IBD (Johns Hopkins Health Book)
A 304-page resource for the family living with IBD; by the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.

Help Your Child with IBD Adjust to School (Seattle Children's Hospital)
Six-minute video with specific tips for parents working with schools to help the child with IBD.

Just Like Me! Teens with IBD (CCFA)
Information for teens with IBD including an ask-the-expert section, a chat room, and "Hot Topics" related to dating, family, friends, and school; Crohn's & Colitis Foundation of America.

National & Local Support

Crohn's & Colitis Foundation of America (CCFA)
Credible disease information with an extensive “kids and teens” section, information about summer camps, and lists of support groups at the local level.

Studies/Registries

Inflammatory Bowel Disease (clincialtrials.gov)
A listing of registries and clinical trials for children with inflammatory bowel disease; National Institutes of Health.

Services for Patients & Families in Rhode Island (RI)

For services not listed above, browse our Services categories or search our database.

* number of provider listings may vary by how states categorize services, whether providers are listed by organization or individual, how services are organized in the state, and other factors; Nationwide (NW) providers are generally limited to web-based services, provider locator services, and organizations that serve children from across the nation.

Authors & Reviewers

Initial publication: January 2011; last update/revision: November 2015
Current Authors and Reviewers:
Authors: Mark Deneau, MD

Bibliography

Conklin LS, Oliva-Hemker M.
Nutritional considerations in pediatric inflammatory bowel disease.
Expert Rev Gastroenterol Hepatol. 2010;4(3):305-17. PubMed abstract

Critch J, Day AS, Otley A, King-Moore C, Teitelbaum JE, Shashidhar H.
Use of enteral nutrition for the control of intestinal inflammation in pediatric Crohn disease.
J Pediatr Gastroenterol Nutr. 2012;54(2):298-305. PubMed abstract

Deneau M, Jensen MK, Holmen J, Williams MS, Book LS, Guthery SL.
Primary sclerosing cholangitis, autoimmune hepatitis, and overlap in Utah children: epidemiology and natural history.
Hepatology. 2013;58(4):1392-400. PubMed abstract

El-Matary W, Sikora S, Spady D.
Bone Mineral Density, Vitamin D, and Disease Activity in Children Newly Diagnosed with Inflammatory Bowel Disease.
Dig Dis Sci. 2010. PubMed abstract

Fell JM.
Update of the management of inflammatory bowel disease.
Arch Dis Child. 2012;97(1):78-83. PubMed abstract / Full Text

Hommel KA, Greenley RN, Maddux MH, Gray WN, Mackner LM.
Self-management in pediatric inflammatory bowel disease: A clinical report of the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition.
J Pediatr Gastroenterol Nutr. 2013;57(2):250-7. PubMed abstract / Full Text

Kappelman MD, Rifas-Shiman SL, Kleinman K, Ollendorf D, Bousvaros A, Grand RJ, Finkelstein JA.
The prevalence and geographic distribution of Crohn's disease and ulcerative colitis in the United States.
Clin Gastroenterol Hepatol. 2007;5(12):1424-9. PubMed abstract

Leung Y, Heyman MB, Mahadevan U.
Transitioning the adolescent inflammatory bowel disease patient: guidelines for the adult and pediatric gastroenterologist.
Inflamm Bowel Dis. 2011;17(10):2169-73. PubMed abstract / Full Text

Lu Y, Bousvaros A.
Varicella vaccination in children with inflammatory bowel disease receiving immunosuppressive therapy.
J Pediatr Gastroenterol Nutr. 2010;50(5):562-5. PubMed abstract

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Inflammatory bowel disease.
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Forty recommendations regarding initial evaluation, how to monitor disease activity, the role of endoscopic evaluation, medical and surgical therapy, timing and choice of each medication, the role of combined therapy, and when to stop medications. Includes a management flowchart.

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