Introduction to CCFA Arkansas Chapter and Inflammatory Bowel Diseases

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Introduction to CCFA Arkansas Chapter and
Inflammatory Bowel Diseases
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Community Development Manager - Arkansas

• Kristin Trulock
• New Arkansas Chapter January 2011

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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

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What are Inflammatory Bowel Diseases (IBDs)

• Refers to chronic (ongoing) diseases that cause
  inflammation of the intestines
• - Crohn's disease
• - Ulcerative colitis

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Facts about Crohns disease and ulcerative
colitis (UC)

• 1.4 Million adults and children have Crohns or
  ulcerative colitis
• Over 14,000 Arkansans suffer in silence from
  these life altering digestive diseases
• Crohns 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.

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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.

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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

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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.

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Ulcerative Colitis Common Symptoms

• 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

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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.

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Diagnosing IBD

• A variety of tests are used to diagnose and
  monitor IBD
• Blood Test
• Upper GI and small bowel series tests
• Endoscopy and Colonoscopy

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Treatment

• Because Crohns 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.

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Treatment
Class of Drugs Examples
Aminosalicylates (5ASAs) - sulfasalazine (Azulfidine) - olsalazine (Dipentum mesalamine (Asacol, Pentasa, - balsalazide (Colazal) Lialda ,Rowasa)
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) adalimumab (Humira) - Certolizumab (Cimzia)
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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
• Stop the clock testing
• Ability to hydrate
• Supply Bag
• Rest period
• Ability to self-monitor activity levels

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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
• Clingy
• Dependent
• Agitated

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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

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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.

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Online Support
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Educational Materials Available Brochures

• Living with Crohns Disease
• Living with Ulcerative Colitis
• IRC Brochure
• Surgery for Crohns Disease Ulcerative Colitis
• Managing Flares Other IBD Symptoms
• Understanding IBD Medication Side Effects
• Diet and Nutrition
• Emotional Factors

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Kids, Parents School Personnel

• A Guide for Kids Teens
• A Guide for Parents
• A Guide for Teachers Other School Personnel
• IBD Me Activity Book

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Fact Sheets

• 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)

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Patient Health Information
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Health Information and Support Resources

• Health Information
• - CCFA.org
• -http//www.uchospitals.edu/online-library/index.
  html---
• -http//www.ccfa.org/info/webcasts/?LMI4.5
• -http//www.naspghan.org/wmspage.cfm?parm1291
• Support
• -http//www.ccfacommunity.org/?LMI3
• -http//www.ucandcrohns.org/
• -http//ibdu.org/
• -http//www.j-pouch.org/

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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/

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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

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Frequently Asked Questions

• What causes Crohns disease/ulcerative colitis?
• Is there a cure, will it go away?
• What foods can I/ cant 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?

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Other questions answered by the IRC

• Disease specific
• Treatment options
• Latest research
• Clinical Trials
• Disability
• Advocacy resources
• Diagnostic testing

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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

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Questions Answers
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THANK YOU