Crohn’s Disease & Ulcerative Colitis:A guide for teachers and other school personnel

Facts about Crohn’s disease and 2ulcerative colitis

Causes and progression of IBD 4

Looking at IBD from the child’s 5perspective

Coping 6

Social adjustments 8

Taking medication during 9school hours

Absence from school 10

School accommodations 11

Accommodations check list 12

Moving on to college 14

Participation in physical activities 15

Communication with parents and 16healthcare professionals

Resources 17

Conclusion 19

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Wouldn’t it be great if allyoung people could enjoyconsistently good health andsmooth adjustments duringtheir elementary and highschool years? Unfortunately,thriving in the school experi-ence is often a challenge forchildren with Crohn’s diseaseand ulcerative colitis.

That’s why it is so importantfor teachers and other schoolpersonnel to understandthese chronic intestinal ill-nesses. Such understandingwill help you provide the sup-port and encouragement thatmay make all the differencein a child’s life.

Facts about Crohn’sdisease and ulcera-tive colitisApproximately 1.4 millionadults and children haveCrohn’s disease or ulcerativecolitis.

Crohn’s disease and ulcerative colitis belongto a group of conditions known as inflamma-tory bowel diseases (IBD). These diseasesshould not be confused with irritable bowelsyndrome (IBS), an unrelated condition thatis medically less serious. IBD can be very de-bilitating if not appropriately treated.

Both Crohn’s disease and ulcerative colitisare chronic, or long-term, conditions. Thediseases are unpredictable and cyclical.Most children who have ulcerative colitis or Crohn’s disease go on to lead full and productive lives.

Crohn’s disease is a condition in which thewalls of the gastrointestinal (GI) tract be-come irritated, inflamed, and swollen. Thisinflammation can occur anywhere in the GI tract, including the mouth, esophagus,stomach, small intestine, large intestine(colon), and rectum. See figure 1.

Ulcerative colitis causes inflammation in thelarge intestine, or colon, only. Tiny open soresor ulcers form on the surface of the lining,where they bleed and produce pus and mucus.

Crohn’s disease and ulcerative colitis mayoccur in children of any age, but the usualonset is between 15 and 35 years of age.

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More recently, there has been a rise in the num-ber of elementary school age children diagnosedwith IBD. You should know that:

The illnesses are not contagious.

Both conditions cause similar symptoms, including:

diarrhea (sometimes bloody)fatigueloss of appetite and weight losscrampy abdominal painintense cramps that can come on without warning, creating sudden urges to use the bathroom. The urgency may be so great that it can result in fecal incontinence (accidental leakage of stool) if there is a delay in reaching the toilet.

Some adolescents with IBD may have delaysin physical growth and puberty, causingthem to look younger and smaller than theirpeers. Many children with these conditionsalso have joint pain and skin rashes.

Oral Cavity

Esophagus

Liver

Stomach

Small Intestine

Terminal Ileum

Large Intestine/Colon

Rectum

Anus

THE GASTROINTESTINAL(GI) TRACT

Figure 1

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Some young people with Crohn’s disease orulcerative colitis have more chronic pain thanothers. Chronic pain has been linked to nu-merous school-related difficulties, includingfrequent absences, decreased ability to concentrate and perform academically, and impaired ability to cope with the demands of the classroom setting.

Causes and progres-sion of IBD

Researchers believe that IBD is caused byseveral factors that work together and leadto the development of the disease, includinggenes, environmental factors or “triggers,”and an overactive immune system.

IBD is not caused by either diet or emotionalstress. However, various kinds of stress,such as school exams, may make IBD symp-toms worse.

Symptoms of IBD tend to worsen in an unpre-dictable manner. This should not automati-cally be interpreted as a way to avoid school.It is especially important that teachers andother school personnel be available and sen-sitive to help the student cope during theseunpredictable flare-ups of disease.

Crohn’s disease and ulcerative colitis arelifelong illnesses. Medications can alleviateinflammation and discomfort, but are notcures for the diseases. In addition, many ofthe medications used cause unpleasant sideeffects such as weight gain and mood swings.

Surgery may be an option if symptoms andinflammation cannot be controlled by med-ication alone.

Looking at IBD from the child’s perspectiveYoung people with Crohn’sdisease or ulcerative colitissay that their single most difficult problem in school istheir need to use the toiletfrequently and without warn-ing due to sudden attacks ofpain and diarrhea.

Children with IBD must be allowed to leavethe classroom quickly, without attracting unnecessary attention. Questioning them infront of classmates about the need to use thetoilet may only cause further embarrassmentand discomfort. In addition, this short delaymay well cause a humiliating accident.

In some schools, bathrooms are locked forlong periods of time for security reasons.Furthermore, toilet stalls may not have doors.You can imagine the problems that lack ofbathroom access creates for a young person

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with IBD. Any accommodation the school canprovide that reduces this anxiety will be ofenormous help.

One answer may be to provide access to aprivate bathroom in the nurse’s office area orteacher’s lounge. It’s also a good idea to letyounger children store an extra pair of under-wear in the nurse’s office. Students may beissued a bathroom pass that will guaranteeaccess to restrooms.

CopingDepending on their age, children cope differently with these chronic intestinaldiseases.

Younger children have a fairly flexible self-image so they can often rebound more quicklyfrom an initial negative reaction to havingIBD. They tend to cope by using avoidanceand distraction.

Middle school kids with IBD can have “magi-cal thinking” about the cause of their illnessand may view it as a kind of punishment.There can be regression in behavior, with thechildren acting younger and more immaturethan their peers. However, most children withIBD tend not to draw attention to themselvesdue to the private nature of the disease.

Adolescents have a better cognitive ability tounderstand the illness and its management,but can still be in denial about its seriousnessor the need to comply with treatment. In addition, the fragile sense of self-esteem associated with puberty can be exacerbatedby IBD-related changes and delays. Reactions

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to the illness can range from denial, grief,and embarrassment to uncertainty and asense of loss. These, in turn, can lead to al-terations in school behavior and functioning.

Young people with IBD are at increased riskfor depression and anxiety. Depression canoccur at the time of diagnosis or later in thecourse of the illness. Pain and fatigue associ-ated with IBD can interfere with concentrationand cause students to withdraw and becomedepressed, angry, or have low self-esteem—especially during the pre-adolescent or ado-lescent years. Additional behavioral transfor-mations that can be seen with depression areextreme mood fluctuations; changes in play,interest, or motivation; and social isolationfrom peers. Teachers can serve a valuablerole as a front-line resource in detecting depression or anxiety in children with IBD.

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Social adjustmentsAs if the attacks of abdominalpain and diarrhea weren’tenough to deal with, childrenand adolescents with IBD oftenare unable to eat, as eatingcauses more diarrhea and pain.

Poor dietary intake may slow growth, but notbeing able to eat in school may further cut offthese young people from their classmates.

Children with IBD may have different dietaryrequirements. Children may eat less, or noteat at all, as a way to avoid pain and/or bath-room trips while in school.

Medications for IBD can be quite effective incontrolling intestinal inflammation and dis-ease symptoms. However, these medicationscan cause side effects that may include:

development of a rounded, puffy appearance(moon face), and weight gainworsening acne mood swings and restlessnesssleep disturbance and disruption, which can lead to fatigue and lack of concentrationduring the school day

These side effects and changes in appearanceand mood may isolate children and teenagersfrom their classmates, who may not be awareof their illness and ridicule them.

Teachers are essential for fostering supportivepeer interactions and encouraging childrenwith IBD to stay involved in both their schoolinterests and extracurricular activities.

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Taking medicationduring school hours

Students with IBD often need to take medica-tions during the school day to help controltheir symptoms. Schools generally requirethat the school nurse dispense these medica-tions. Ideally, arrangements should be madeto allow the timely dispensing of medicationto a student. These arrangements should en-sure that the child not be late for class andstand out, yet again, as being different.

In younger children, one strategy might be to combine the visit to the nurse’s office withan unrelated task that the child can feel goodabout (perhaps taking a note or message to the administrative office or serving as hallmonitor).

Adolescents may go through a period of de-nial, refusing to take their medications alto-gether. Alerted to this possibility, a teacheror other school professional can step in andhelp deter potentially harmful behavior.Medication administration by the school nurseshould be done in a matter-of-fact, non-judg-mental manner.

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Absence from schoolNot all young people with Crohn’s disease orulcerative colitis are small or show physicalside effects of medication. Although somemay appear to be well, they can actually bequite ill.

Many kids with IBD may require hospitaliza-tion from time to time, sometimes for severalweeks. Surgery may be necessary to removediseased intestine or to alleviate a particularcomplication. While in the hospital, childrenappreciate hearing from classmates andteachers and are often able to keep up withschoolwork. However, it is important to remember that teachers should ask permis-sion before sharing any information withclassmates; many students have differentpreferences.

Teachers can be instrumental in helping tocoordinate an academic make-up plan forschool absences with the child, parents, andschool counselor. By having a plan in place

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prior to any absences, important components,such as getting assignments and class notesand making up exams, can be discussed andarranged in advance. It is important that ac-commodations for each child be coordinatedand subjected to school policies.

School accommoda-tionsTwo federal laws, Section 504 of the Rehabilitation Actof 1973 and the Individualswith Disabilities EducationAct, provide protection forpublic school students withdisabilities.

Although both laws apply to students with dis-abilities, not all students with disabilities qualifyfor the protections of both laws. Each law hasspecific eligibility requirements and guidelinesfor services.

504 Plan: This comes from Section 504 of theRehabilitation Act of 1973. This act requiresrecipients of federal education funding toprovide children with disabilities appropriateeducational services designed to meet theindividual needs of such students, to thesame extent as the needs of students with-out disabilities are met. A 504 plan spells outthe modifications and accommodations thatwill be needed for these students to have anopportunity to perform at the same level astheir peers, and might include such things asblood sugar monitoring, an extra set of text-books, or home instruction. A Section 504

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plan involves an evaluation of the child’s dis-ability as well as his or her academic abilitiesand specific provisions to help the childreach his or her academic potential.

Individuals with Disabilities Education Act(IDEA): First passed as the Education for AllHandicapped Children Act in 1974 and mostrecently amended in 2004, the act governshow states and agencies provide certain edu-cational services to children with disabilities,including children with health impairmentslike IBD. For students with disabilities whorequire specialized instruction, the IDEA con-trols the procedural requirements. The IDEAprocess is more involved than that requiredunder Section 504. One of the provisions ofthe act requires schools that receive publicfunding to create an Individualized EducationPlan (IEP) for each child covered by the plan,ensuring that the unique needs of the childare met in the least restrictive environment.The “individualized” part of IEP means thatthe plan has to be tailored specifically toyour child’s special needs. IDEA covers chil-dren with disabilities from birth to age 21.

Accommodationscheck listStudents may have differentneeds for accommodationsbased on the level of diseaseactivity.

If a child is falling behind in school or requiresspecial accommodations to maintain their aca-demic performance, it is important to bring thisinformation to the attention of the child’s parents. Informal and formal accommodationsmay help the child reach and keep their academic

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potential. Informal accommodations may be developed by a teacher, parent, and child. En-abling the student to have easy access to anexit might be considered informal. Other strate-gies, such as “stop the clock,” are a formal ac-commodation. Here are some accommodationsthat might help a student with IBD:

Unlimited bathroom pass: Students with active disease symptoms may need to usethe bathroom many times per day—often ur-gently in order to avoid fecal incontinence.The student and teacher will work out an appropriate bathroom signal to help avoiddrawing attention to the student’s frequentbathroom breaks.

“Stop the clock” testing:When taking anexam, the student may need to take a breakdue to pain or bowel urgency. Their test timewill be extended by the amount of time thatthe student is away from the exam.

Ability to hydrate: Frequent bowel movementsand medication contribute to loss of fluids.Students should be allowed to carry anddrink fluids throughout the day.

Supply bag: Student should be permitted tocarry and eat small snacks, candy (to treatdry mouth), wet wipes, and other suppliesthroughout the day and use as needed.

Tests and project limits: Medications and active disease symptoms may contribute tosleep deprivation and fatigue. As a result, thenumber of tests and projects can be limitedto one to two per day. Test and project dead-lines can also be extended without penalty.

Rest period: School nurse will provide a loca-tion as needed for students to lie down or aprivate place to change clothes.

School absence: After a specified number of days absent from school, the student willreceive in-home or hospital tutoring.

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Alternate seating: To accommodate easy access to classroom exits, the student’s seatmay be changed.

Medications: The student, parent, and nursewill meet to discuss and establish a medica-tion schedule.

Tutoring and support: If the student is absentfor more than “x” days from school, they willhave an opportunity to make up or get assis-tance with assignments. Students will be al-lowed to have an extra set of books at home.

Extracurricular programs: The student will be allowed to participate in programs andevents without penalty due to absenteeism.

Physical education class: The student shouldbe allowed to self-monitor his/her energylevel to determine if he or she can participatein physical activities. The physical educationteacher will notify their parents if there is ongoing non-participation in gym class.

These are some possible accommodations.Others may be added to meet the needs of each student.

Moving on to collegeWhile the IDEA does not apply to post-sec-ondary schools, certain portions of the Reha-bilitation Act do. These regulations prohibitdiscrimination in admissions and recruitment,either by excluding disabled students or bysetting a quota for admission of disabledstudents. A student with a 504 plan in highschool can also request accommodationsin college.

Students with health conditions such asCrohn’s disease or ulcerative colitis cannotbe excluded from any area of campus or

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academic life to which able-bodied studentsenjoy access, including research, counseling,and occupational training.

The legislation requires that adjustments bemade to eliminate and/or protect againstdiscrimination. These adjustments includeeverything from extending the length of timepermitted for completion of degree require-ments, to ensuring that the results of theevaluation reflect the student’s performance,not his or her disability. This may include, forexample, allowing an IBD student extra timeto complete an exam to allow for bathroombreaks or a private dorm room.

Participation inphysical activitiesYoung people with Crohn’sdisease or ulcerative colitisshould be active and partici-pate in physical activities likesports or dance wheneverpossible.

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Admittedly, some strenuous activities maycause fatigue or aggravate abdominal and jointpain. While a modified gym program may bethe answer in some circumstances, it is desir-able that the child have some physical activityto maintain good health. In addition to thephysical benefits, including building strongermuscles and bones, these activities provide anoutlet for stress and can help build confidenceand self-esteem.

Communication withparents and health-care professionalsTeachers usually get to knowtheir students very well.

Thus, it is not surprising that you may be thefirst one to recognize when a child is experienc-ing a flare-up of IBD.

Some tip-offs might be more frequent trips to the toilet, decreases in food intake duringlunch, or a decline in school performance because of worsening intestinal symptoms.

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Similarly, you may be the first to notice indi-cations of a collapse in coping mechanisms.The development of discipline problems orsigns of social isolation from peers mightsuggest such breakdowns.

Early intervention when problems develop is important in treating IBD. Timely communi-cation with parents, who can alert healthcareprofessionals, can be extremely useful inidentifying flare-ups or other complicationsbefore they progress too far. Additional inter-ventions can then be initiated.

ResourcesIf you want to learn moreabout Crohn’s disease or ulcerative colitis, or help children and parents learnmore, there are a number of resources to help.

These include:

CCFA.org—The website for the Crohn’s & Colitis Foundation of America is home to a greatdeal of information on the diseases, their treat-ments, and brochures, including:

Living with Crohn’s Disease

Living with Ulcerative Colitis

Managing Flares and Other IBD Symptoms

A Guide for Parents

A Guide for Teens with IBD

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Pete Learns All About Crohn’s & Colitis: Comic book for kids and teens

IBD & Me: Activity book for kids ages 8–12

Camp Oasis—CCFA Camp Oasis is a co-ed residential camp program. Its mission is to enrich the lives of children with IBD by providing a safe and supportive camp community. Learn more: www.ccfa.org/camps.

Campus Connection—College students can connect with other students and get tips andinfo at: www.ccfa.org/campus-connection.

Irwin M. and Suzanne R. Rosenthal IBD Resource Center (IBD Help Center)—The IBDHelp Center is a free service designed to provide you with disease-specific information,guidance, and support. Our Information Specialists can be reached by calling888.MY.GUT.PAIN (888-694-8872) Mondaythrough Friday, 9:00 am to 5:00 pm EasternTime or by e-mailing info@ccfa.org.

Kids and teens website—Kids and teens with IBD have their very own website wherethey can find specialized information oncamps, coping in school, and other helpful tips at www.ccfa.org.

Local education and support programs—Education programs, support groups, and otherevents are located throughout the country. Go online to www.ccfa.org/chapters to find thelocal CCFA chapter in your area.

Other Resourceswww.ibdu.org—IBDU is a resource for teenswith information to help them transition from pediatric care to adult care.

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ConclusionHaving a chronic illness is difficult for anyone, but forchildren who are in the midstof growth and developmenton so many different levels—physical, cognitive, emotional,and social—it can be an enor-mous burden and challenge.

It is vital that teachers and other school person-nel recognize that fact and rise to the occasion.Your goal should be to provide these youngpeople with as normal a life in the school settingas possible. Educational professionals are in a key position to provide an environment thatfosters resilience in a child or teenager with IBD.You can do so by:

providing opportunities for meaningful participation in the life of the school.

teaching assertiveness, communication, and problem-solving skills that will help thechild make sound decisions and effectivelymanage stress.

People with Crohn’s disease and ulcerative colitishave excelled in all fields of life. With the helpof an understanding and supportive school sys-tem—together with strong parental supportand good medical care—it is our hope that allthese children will complete their education andmake the most of their full academic potential.

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Notes:

About CCFAEstablished in 1967, the Crohn’s & Colitis Foun-dation of America, Inc. (CCFA) is a nonprofit,volunteer-driven organization dedicated tofinding the cures for Crohn’s disease and ulcer-ative colitis, and improving the quality of life ofchildren and adults affected by these diseases.

Since our founding, CCFA has remained at theforefront of research in Crohn’s disease and ulcerative colitis. Today, we fund cutting-edgestudies at major medical institutions, nurtureinvestigators at the early stages of their careers,and finance underdeveloped areas of research.

In addition, CCFA provides a comprehensive series of education programs, printed and on-line resources, support services, and advocacyprograms to members of the IBD community,including patients and caregivers.

We can help! Contact us at:

888.MY.GUT.PAIN(888.694.8872) info@ccfa.orgwww.ccfa.org

Crohn’s & Colitis Foundation of America733 Third Avenue Suite 510New York, NY 10017212.685.3440

Printed on Recycled Paper

The Crohn’s & Colitis Foundation of America is a nonprofitorganization that relies on the generosity of private contri-butions to advance its mission to find a cure for Crohn’sdisease and ulcerative colitis.

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733 Third Avenue Suite 510New York, NY 10017212.685.3440www.ccfa.org

This brochure is supported by a grant from the Lisa & Douglas Goldman Fund.

This brochure was created in collaboration with