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Introduction to CCFA
Arkansas Chapter and
Inflammatory Bowel Diseases
Community Development Manager - Arkansas
Kristin Trulock
• New Arkansas Chapter – January 2011
WELCOME
Objectives:
• Provide basic information on inflammatory bowel
diseases (IBDs)
• Introduction to the possible needs of an IBD
patient
• How you can help with the success an IBD
student
• CCFA Arkansas Chapter Services
What are Inflammatory Bowel Diseases (IBDs)
• Refers to chronic (ongoing) diseases that cause inflammation of the
intestines:
- Crohn's disease
- Ulcerative colitis
Facts about Crohn’s disease and ulcerative
colitis (UC)
• 1.4 Million adults and children have Crohn’s or ulcerative colitis
• Over 14,000 Arkansans suffer in silence from these life altering
digestive diseases
• Crohn’s and UC may occur in children of any age, but the usual
onset is between 15 & 25 years of age.
• These diseases are not contagious
• They may cause delays in physical growth and puberty.
• Many children with IBD also have joint pain, skin rashes, eye
problems, mouth sores and other conditions.
Crohn's Disease
• Is a chronic disorder that causes
inflammation of the digestive or
gastrointestinal (GI) tract. It can involve any
area of the GI tract from the mouth to the
anus, but it mostly affects the small
intestine and/or colon.
Crohn's Disease: Common Symptoms
• Persistent diarrhea (loose, watery, or frequent bowel
movements)
• Crampy abdominal pain
• Fever
• Rectal bleeding
• Loss of appetite and subsequent weight loss
• Fatigue
• Can also be constipation instead of diarrhea
Note: Symptoms vary from person to person and may change over time
Ulcerative Colitis
• A chronic disease of the colon, or large
intestine. The disease is marked by
inflammation and ulceration of the colon
mucosa, or innermost lining.
Ulcerative Colitis: Common Symptoms
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Diarrhea
Mucus in the stool
Bloody stools
Urgency to have a bowel movement
Crampy abdominal pain
Loss of appetite and subsequent weight loss
Fatigue
Note: Symptoms vary from person to person and may change over time
What Causes IBD?
Researchers believe that IBD is
caused by several factors that
work together to lead to the
development of the disease,
including genes, environmental
factors or “triggers,” and an
overactive immune system.
Diagnosing IBD
A variety of tests are used to
diagnose and monitor IBD
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Blood Test
Upper GI and small bowel series tests
Endoscopy and Colonoscopy
Treatment
• Because Crohn’s disease and ulcerative colitis
are considered chronic, meaning they can flare
up after an initial remission, the goal of treatment
is to achieve and maintain remission.
• Treatments can include medication, surgery, or
nutritional therapies.
Treatment
Class of Drugs
Aminosalicylates
(5ASAs)
Examples
Corticosteroids
- budesonide (Entocort® EC)
- prednisone (Deltasone®)
- prednisolone (Pediapred Oral Liquid®, Medrol®)
Immunomodulators
- azathioprine (Imuran®, Azasan®)
- methotrexate
- 6-MP (Purinethol®)
- cyclosporine (Sandimmune®, Gengraf®, Neoral®)
Antibiotics
- metronidazole (Flagyl®)
- ciprofloxacin (Cipro®, Proquin®)
Biologic therapies
- Infliximab (Remicade®) - natalizumab (Tysabri®)
- sulfasalazine (Azulfidine®)
- olsalazine (Dipentum®
- mesalamine (Asacol®, Pentasa®, - balsalazide (Colazal™)
Lialda® ,Rowasa®)
- adalimumab (Humira®) - Certolizumab (Cimzia®)
Possible School Accommodations
Students may have different needs for
accommodations based on level of disease
activity.
• Unlimited bathroom pass – including access to non-automatic toilets
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“Stop the clock” testing
Ability to hydrate
Supply Bag
Rest period
Ability to self-monitor activity levels
WAYS TO SUPPORT IBD PATIENTS
The diagnosis of a chronic illness can be a
tough blow for anyone, but for children, it can
be especially hard to bear.
As a result, children with IBD may become:
• Anxious
• Depressed
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Clingy
Dependent
Agitated
WAYS TO SUPPORT IBD PATIENTS
• Remember these diseases are individualized
• Depending on their age, children cope
differently with these chronic intestinal
diseases.
• Social adjustments
• Taking medications during school hours
• School accommodations
• Provide information on CCFA for patients and
parents
WHAT WE DO
• Provide support, family gatherings, educational
seminars and walks to raise funds for research.
• Power of 2 program – program that connects
patients with others going through similar
situations
• Camp Oasis – summer camp for IBD kids
• Brochures, online services and IRC number.
Online Support
Educational Materials Available: Brochures
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Living with Crohn’s Disease
Living with Ulcerative Colitis
IRC Brochure
Surgery for Crohn’s Disease & Ulcerative Colitis
Managing Flares & Other IBD Symptoms
Understanding IBD Medication & Side Effects
Diet and Nutrition
Emotional Factors
Kids, Parents & School Personnel
• A Guide for Kids & Teens
• A Guide for Parents
• A Guide for Teachers & Other
School Personnel
• IBD & Me Activity Book
Fact Sheets
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Find a Specialist or Treatment Center
Diagnosing IBD
Complementary & Alternative Therapies
Medications (Aminosalicylates, Antibiotics, Biologics, Corticosteroids, Immunomodulators)
Pregnancy and IBD
Flu & IBD
General Health Care Maintenance
Young Adults & IBD
Intestinal Complications
Extraintestinal Complications (Arthritis, Bone Loss, Eye Disorders, Liver Disease, Skin Disorders)
Patient Health Information
Health Information and Support Resources
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Health Information
- CCFA.org
-http://www.uchospitals.edu/online-library/index.html---
-http://www.ccfa.org/info/webcasts/?LMI=4.5
-http://www.naspghan.org/wmspage.cfm?parm1=291
• Support
-http://www.ccfacommunity.org/?LMI=3
-http://www.ucandcrohns.org/
-http://ibdu.org/
-http://www.j-pouch.org/
Health & Medical Information
• http://www2.niddk.nih.gov/
• http://www.medscape.com/gastroenterology
• http://www.medicinenet.com/script/main/hp.asp
• http://www.thecdwg.org/
Financial & Insurance Help
• http://www.needymeds.org/
• http://www.rxassist.org/
• http://www.modestneeds.org/
• https://www.panfoundation.org/
• http://www.healthinsurance.org/default.lasso
Frequently Asked Questions
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What causes Crohn’s disease/ulcerative colitis?
Is there a cure, will it go away?
What foods can I/ can’t eat? What is a good diet plan?
What types of alternative treatments are helpful for IBD
Does stress play a role in the disease?
Are there any financial assistance programs available to help me pay
for my medication?
• Where can I find support?
• Who is the best specialist in my area for this disease?
• Are there any new medications to treat IBD?
Other questions answered by the IRC
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Disease specific
Treatment options
Latest research
Clinical Trials
Disability
Advocacy resources
Diagnostic testing
How CCFA Arkansas Chapter can help
you
• Provide support in aiding IBD patients and their
families
• Power of 2 program – program that connects
patients with others experiencing similar
situations
Questions & Answers
THANK YOU