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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 • • • • • • • 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 • • • 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 • • • • • “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 • • • 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 • • • • • • • • 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 • • • • • • • • • • 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 • 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 • • • • • • 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 • • • • • • • 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
