A Guide to College Success

Transitioning from High School to College for Students with IBD

Social Changes

What Your Child Feels

Peers

Explaining IBD

Dating

Support Groups

How does your child feel? Your child might feel:

Different from peers Embarrassed by symptoms Vulnerable Poor body image, “Why am

I always sick and no one else is?”

Left out from social gatherings if friends assume they are too sick

Make sure your child remembers that they are more than “just a person with IBD.”

What can you do?

Talking to Peers

Talking to peers can help: Build a support network for your child. Help your child feel less alone.

Explaining IBD Your child may feel different and embarrassed by the

disease. Your child may want privacy, but it is good to let close

friends know what is going on. Friends may not understand what living with a chronic

disease is like (use examples and stories to help explain)

Talking to close friends can make your child feel less alone

and more supported.

Dating

• This can be a source of anxiety for teens, especially those with chronic illnesses such as IBD.

• Remind your child that having a chronic illness does not mean they can’t have a social life.

• Help them know they should be accepted just the way the are.

• How to broach the topic with boyfriend/girlfriend on dates.

Support Groups

Provide a place for your child to meet other people with IBD, especially of their own age

Helps your child realize that they are not alone! Check out where the support groups are in your area

at www.ccfa.org under Chapters and Events

Preparing for College The more prepared the better

504 plan for the SATs or ACTs Think about the location of schools where you are applying

Is going back home to see doctors necessary, or are you willing to get new ones, sometimes leasion doctors are another option

Contact disability services at the school and see what accommodations they have available

Talk to admissions about options such as private bathrooms for dorm living, if meal plans are required, ect

NEW DOCTORSManaging the transition of Pediatric GI to Adult GI

Gaining independence in healthcare

• They are probably doing this already, but before they leave for college, your child should be able to: – Take medications without reminders

– Fill prescriptions on their own

– Track symptoms

– Call the doctor with questions

– Make appointments

Independence

• Things to note:– Age Limits– Difference in Responsibility– Get Referrals– Find the right doctor– Talk to your parents about signing HIPPA releases

so they can be up to date on your condition

A Smooth Transition

Support Systems

• If you are not a commuter student this is most likely you are living away from your parents so your support system might shift– Family is only a phone call away– Tell friends if you are comfortable, tell them you

just want someone to talk to about it– Some schools have Counsoling centers which

would be able to help you with the transition

Taking Control

• Managing medications may be harder, find a pharmacy close to campus– No more going to the nurses office for medication,

be prepared when you leave for class• Now more than ever you are in control of your

disease– Ever action there is a reaction, bad decisions will

make you sicker

COLLEGE

The Logistics of Managing College and IBD

Disability Services, dorm life, eating well and staying healthy on campus

• Important resource for students with any kind of special needs– Not only for students with learning disabilities

• What can disability services do for you?– Teach self-advocacy– Help to create a network of resources– Provide accommodations• Alternative forms of testing (stop the clock, extended

time)• Serve as a liaison between student and professors• Serve as an overall support for the student• Help to ensure adequate housing to fulfill needs

Disability Services

• Accommodations– Restroom access, single room, substance free area, quiet

area, etc.

• Informing the RA of your medical condition– This helps them understand what you are going through, so

they are aware if you get sick, or if anything should arise and ease your transition into college

Dorm Life - General

• Telling your roommate about your disease can be difficult, but being upfront about it early will make it less awkward

• Explain: – In simple terms, they might not understand it all but that’s

OK– That you need to take certain medication for your condition– That you have good and bad days with this disease– What your symptoms are usually like– That unlike other chronic illnesses, they will not be involved

in taking care of you, unless in an extreme case

Dorm Life – Roommate(s)

• University Health Center– Trusted medical professionals– Store medications– Transportation to medical appointments– Medical and emotional support– Counseling center on campus for students dealing with

chronic diseases– Classes and seminars on how to deal with stress– It is important to know where the health center is on campus, and to be familiar with the contact information

Health Resources on campus

• It is important for all students, but especially those with a chronic illness, to do everything they can to keep themselves healthy

College Lifestyle

Topics of Worry for Parents

– You may want to discuss the following things with your child:• Partying

– Drinking/Smoking

• Getting enough sleep• Reducing stress• Eating well• Class load and schedule • Clean Environment

Partying

• Many medications recommend you not drinking – Your body already has a lot of foreign chemicals in

it • Drug use is especially not a good idea• Realistically what is okay, and not okay?– Is different for everyone

Sexuality

• Sexuality can be more challenging when you don’t feel good

• Take precautions!– Safe sex includes condoms or other protection no

matter who it is• Be safe, and make smart choices but always

stay true to yourself!

Getting enough sleep

• As a college student, its easy to get caught up in your school work or social life, however it is important to remember to sleep!

• Everyone’s individual sleep needs vary. In general, most healthy adults are built for 16 hours of wakefulness and need an average of eight hours of sleep a night (APA)

• Plan ahead• Communicate with

professors• Listen to your body– Know when to take breaks– Get enough sleep

• Work with Disabilities Services• Counseling services• Exercise– Workout classes, personal trainers, intramurals, etc.

Managing Stress

• Discuss dietary needs with your child’s doctor

• Meet with a dining hall staff person or dietician to discuss needs

• Know what you can/cannot eat

• Keeping “safe goods” in a refrigerator in your room

Eating well

• Know your stress level– How many hours to take?–What classes

• Be mindful of your body– Are you a morning person?

• Don’t stack your classes, give yourself enough breaks in the day

Classes

Just in case

• Be familiar with hospitals and doctors in the area• Tell someone else about your condition• Make sure your professors knows you have to leave

class sometimes– Bring any medication you might need during the day to

class in a backpack• Sometimes flair ups happen be prepared to miss

class – This is easier to handle if you were well prepared in

classes before your condition worsened

Dealing with Adversity

• Sometimes people just don’t understand what having a chronic condition is like

• Know that you are still under the ADA

Clean Environment

• You are more susceptible to the disease around you, especially in a shared environment like the dorms

• Be aware of your environment– Who is sick around you?

Study Abroad

• Studying Abroad is doable with a chronic illness like Crohn’s, Colitis, or IBD, it just takes some planning– Have enough medication for the time you are away

and make sure to take them regularly– Notify your program about your illness– Locate the local hospital or clinic, and get names of

GI doctors– What what you each…and Have Fun!

Traveling Abroad

With this illness, you can travel to different countries, whether studying abroad, vacationing, volunteering or doing your own thing, just make sure:– You bring enough medication to last your trip– Be conscious of what you eat in different areas

and what you can handle– Rest up and know when to take breaks– Enjoy the experience!

• It is tough to deal with a chronic illness while juggling classes, but with the right support, taking medication, managing stress, and using these tips, it is manageable

• Don’t be discouraged if you have a flair, they may or might not happen over your college career, just be proactive

• Don’t let the disease dictate your life, don’t forget to have some fun!

Enjoy the experience!

Entering the “Real World”

• After so many years of classes its finally time to apply for a job, but how do your address your disease on a resume?

GETTING INVOLVED

How CCFA can take advocacy and empowerment to the next level

Take Steps, Team Challenge, Camp Oasis, advocacy, giving back & other opportunities

• Why should I get involved?– Great resource for

parents• Learning new tips• Advice • Education on the disease

itself• Meet other caretakers of

IBD patients• Support Network

– Support your child

• Why should my child be involved?– Community– Meet other kids with IBD– Sense of control– Education

• Medical• Social

– Confidence & Empowerment

– Pay it forward

CCFA Involvement

CCFA Programs

Support Groups

Advocacy

Information Resource Center888.MY.GUT.PAIN(888.694.8872)

National Youth Leadership Council