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TAKING IBD

TO SCHOOL

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ATTENDING ELEMENTARYTHROUGH HIGH SCHOOL

For students below college age, themost important factor is ensuringthat their teachers and school administrators have adequate information about their disease.

“It can be difficult to communicateeffectively with all of your child’steachers in middle school or highschool,” says Diane Ketlak, M.A.School Psychologist, W.S. ParkerMiddle School, Reading, MA. “First,contact the school nurse, guidancecounselor, school psychologist, special education coordinator, or principal. These people can play a significant role in coordinatinginformation to all staff who have contact with your child.”

Every faculty person doesn’t have toknow every detail, but every individual

the students will come in contactwith does need to know what the students should be allowed to do to accommodate their disease. “Younever know if there will be a substituteteacher or classes will be combined. In those cases, IBD students won’tnecessarily want to go up and describetheir symptoms,” explained KarenHerlihy, a pre-K/elementary schoolteacher at Rosary Academy LearningCenter in Watertown, MA, who hasCrohn’s disease herself.

Jane and David Wolfman fromLexington, MA, whose 12-year-olddaughter, Julie, has Crohn’s disease,told her teachers in advance thatshe’d be absent from school at timesand asked how to handle the situation.“It worked out fine. I always knewwhat they needed me to do and theyalways knew what we needed themto do. And Julie knew she wouldn’tfall behind,” Jane reports.

Don’t be afraid to ask for a teammeeting so you can speak directly to all of your child’s teachers andsupport staff. They will often haveprior experiences with chronically ill children and may offer advice thatcan be very helpful and reassuring.

You can also distribute literatureabout your child’s illness and treat-ment at a team conference. “WhenJulie was first diagnosed, we foundthe printed materials from CCFA to be outstanding, especially thebrochure on explaining Crohn’s toyour teacher. We downloaded it,copied it and gave it to every teacher.And the teachers were so apprecia-tive,” says David. “There’s a hugedifference between reading a notefrom the principal saying a child issick and reading CCFA guides andreally understanding the disease,”Karen adds.

The pressures that all students feel at the start of the school year

are greatly magnified when IBD is part of the curriculum. Kids

with Crohn’s or colitis face additional challenges: How will their

disease affect their grades? Their relationships with teachers and

classmates? Education and communication can ease these concerns.

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Parents may sometimes need to work behind the scenes to moderatethe amount of stress their childrentake on without defeating their will. “Students with chronic illnessoften work extremely hard to over-compensate for their illness and tryto maintain an unusual amount ofcontrol,” Ms. Ketlak explains. “It canbe very helpful for a teacher to knowthat a youngster is having a tough dayor feeling particularly stressed. Theteacher can then extend the deadlineon a project or allow a makeup test ina natural manner without drawingattention to the situation.” Teachersand school staff are acutely awarewhen situations should be kept confi-dential and will honor such requests.

Students should communicate withtheir teachers, too. “It really helpsyou through the school time if youfind just one teacher that you canreally trust. If you keep it to yourselfwhen you’re not feeling well, it’sgoing to take you much longer torecover,” says Karen. “When you goto your teachers, you’ll see a differentside of them, the personal side,” addsAlison Rosenfeld, a 17-year-old highschool student from Newton, MAwho has Crohn’s disease. “They canbe very compassionate. And they seethe other side of you, too.”

This happens more easily when thestudents are open and well-informedabout their disease. “The best way torelieve their stress levels is to ensuretheir self-esteem is high and thatthey’re comfortable with being anIBD patient,” David Wolfman says.

David’s daughter, Julie, and AliRosenfeld are very open with theirclassmates as well as their teachers.Both have given class presentationsabout their disease. “It helped me totell people what I was going through,because if you keep it inside anddon’t give other students and adultsthat chance to possibly give you the

support you need, you never know ifyou’re going to get it,” explains Ali.

Adolescents can be reluctant to share information about their medical condition. They may need to be reminded that facts about their illness are less frightening to theirclassmates than rumors. The morethe other students know, the lesslikely they will be to alienate or tease them.

If they are teased or harassed, Ms.Ketlak suggests role-playing at homeor using humor to disarm the teaser.“While some cases may require intervention by a parent, this cansometimes backfire, reinforcing achild into becoming a victim.”

If your child’s needs are not beingmet despite your and his/her bestefforts, remember that Federal lawrequires public schools to providechronically ill students with a freeand appropriate education in theleast restrictive environment.“Schools should evaluate a child’s special needs and develop a plan,which is known as an individualizededucational plan (IEP), for satisfyingany medical requirements. Parentsmay rightfully expect these plans tobe developed and enacted. If theybelieve that their child’s rights arenot being protected, they may appealto the courts,” says Ms. Ketlak.

GOING OFF TO COLLEGE

Danielle Karr, a senior at BrownUniversity who’s majoring in comput-er science economics, was diagnosedwith ulcerative colitis when she was asenior in high school. Since she hadalready completed her college appli-cations, it was too late to investigatehow the schools could accommodateher disease. “I just sort of showed upand went with it,” she says. To spare

other students from having to learnthings the hard way, she offers thefollowing advice: “Find a school that’sright for you and then worry aboutthe details of your health care. Thereare ways to fix just about any problemwith a little effort on your part.”

Danielle cautions that if you’reunhappy with your choice of school,your health and studies will suffer.IBD doesn’t necessarily precludestudy abroad programs either. Mostdeveloped countries have gastroen-terologists that can consult with yourdoctor at home if the need arises. Inaddition, many of these countrieshave patient organizations, such asthe European Federation of Crohn’sand Colitis Associations (EFCCA).To locate an association in a particularcountry, check out “InternationalOrganizations/Information in OtherLanguages” at:www.ccfa.org/research/links.

“As soon as you pick your school, filewith Disability Support Services (oryour school’s equivalent) to makesure your housing comes with aclosely located bathroom. Deadlinesare really early,” she warns.

“If you’re too far away from home tocommute for check-ups, work withyour regular gastroenterologist to find another doctor near school. Talkabout what you should do in theevent of a flare-up while you’re at college: Should you first call yourdoctor, make a doctor’s appointmentor go to Health Services? Be sure togive your doctor the phone and faxnumbers for Health Services in casehe or she needs to speak with thestaff or order a test for you.”

Before heading off to college, Daniellealso recommends finding out whatservices (lab, pharmacy, X-ray facilities,etc.) the clinic at school provides andtelling your doctor about them whenyou’re developing your contingency

TAKING IBD TO SCHOOL

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plans. “If these services aren't availableon campus, see how far you have to goto get them at a hospital or clinic.”

“If you take maintenance medica-tions, determine ahead of time whereyou can fill your prescriptions,” shesays. Bring at least a month’s supplyof pills with you, along with the nameand number of your old pharmacy, so

that you can easily transfer yourremaining refills.

Once you arrive on campus, familiar-ize the school physicians and healthpersonnel with your case. The healthclinic should also be apprised of anychanges in your health during yourtime at school. And while you’relearning your way around campus,

note the locations of bathroom facili-ties and find out when they’re open.

Schedule an initial appointment withthe gastroenterologist in your collegetown as soon as possible. This doctorshould know your complete historywith IBD, your medications, and theresults of your most recent tests. Heor she should not make any major

“I tell the people who

can help me or that I live

with or who I’m really

close to”

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decisions, such as changing yourmedication or restricting your diet,without consulting with your primarydoctor back home. That physician ismore familiar with your individual situation and can make the best decisions regarding your health.

If you have many diet triggers thatlimit what you can eat, Danielle

suggests talking to both your doctorand the dining services nutritionist.“The nutritionist can fill you in on thetype of menus at dining halls and theother options available all the time,like grilled chicken, salad bars, andpasta, that often don't even make iton the menu.”

Students receiving nutritional supple-ments may find a nutritional supportservice in town or at a local hospitalwith the help of their doctors. Thedoctor can suggest a routine that willallow the necessary caloric intakewhile interfering as little as possiblewith academic and social life.

Ingesting other substances is a temp-tation that students with IBD hadbest avoid. “We face not only the normal risks of hangovers and alcoholpoisoning, but also have to think abouthow alcohol will mix with medicationsand whether it could trip a flare,”Danielle explains. She recommendstalking to your doctor (without yourparents around, if that’s more com-fortable) about the potentialrepercussions. “Keep in mind that inrecent studies, 72 percent of collegestudents characterized themselves asoccasional or light drinkers or abstainentirely. So if you determine that youdon’t feel the need to drink, youwon’t be alone.” Of course, the samecaution applies to drugs, but thepotential damages are even greater.

Who else do you need to discuss your medical condition with? Onlywho you want to. “I tell the peoplewho can help me or that I live with or who I’m really close to,” saysDanielle. “If you want to be an advo-cate or let a lot of people know aboutyour situation to raise awareness,that’s fine. But when you go away tocollege, chances are, you don't knowthat many people. You have an oppor-tunity to make a brand new you. Youare as you are for whatever reason, and there's no need to explain that to anybody.”

Danielle will be happy to answerquestions from and about college students with IBD. Her email addressis Danielle_Karr@brown.edu

Suzanne R. Undy – Suzanne R. Undy is a freelance writer in New York City whosework has appeared in Fitness, Fit,andNatural Living Today magazines.

Danielle Karr, asenior at BrownUniversity who’smajoring in computer scienceeconomics, was diagnosed with ulcerative colitiswhen she was asenior in highschool.