Presentation Transcript

1. Welcome

2. 1.4 Million America’s with IBD Crohn’s & Colitis Foundation of America is here to: Cure Crohn’s and ulcerative colitis, and to improve the quality of life of children and adults affected by these disease
3. CCFA Nursing Initiatives Committee (NIC) Formed in 2010 Chair - Michele Rubin APN CNS CGRN – IBD Adult (University of Chicago Medicine) Co-Chair – Maureen Kelly APN NP – IBD Pediatric (University of North Carolina – Chapel Hill) NIC comprised of 20 RNs, NPs, CNSs from across the U.S. NIC is part of the CCFA National Scientific Advisory Committee Leading CCFA’s efforts to provide educational opportunities and resources to the RN community
4. CCFA.org - For IBD Nurses: Monthly Tips Monthly nursing tips Created and referenced by the NIC Topics have included: - Adherence - Reminders for vaccines and flu shots - General health maintenance www.ccfa.org/science-and-professionals/programs-materials/ibd-nurses/
5. December – IBD Awareness -----December Tips For our providers that take care of the senior population with IBD:Remember to remind your patients that it is open enrollment for Medicare until December 7. 2012.  There have been changes.  Refer to http://www.medicare.gov Travel tips: This is a popular time of the year to travel, whether it is by car, train, or plane.  For air and train travel, recommend aisle seating for ease of getting up to use the rest room.  For air travel in particular, remind your patients to stay hydrated since flying is very dehydrating.  For car travel, it may be helpful to map out stops or even travel with a portable toilet.  There is a fantastic app for the iPhone called “Sit or Squat” sponsored by Charmin that actually will locate the closest bathroom, provide reviews (or allow you to review them) and sometimes has pictures (or allow you to upload).   For any sort of travel, Always pack toilet paper, wet wipes, A change of clothes.  Always have a list of emergency numbers:  gastro MD, surgeon (if applicable), primary care MD.  Always pack the original medication containers with extra medication, not just the little travel packs.   ALWAYS pack medications in carryon.Ostomy supplies should also go in carryon luggage. Tell patients to advise security if they have needles and injectable medications.  For such medications, they should also have a portable sharps container and ice packs if medications should be kept cold. 
6. IBD Awareness -----December Tips International Travel For international travel provide antibiotics for possible travelers diarrhea.  Make sure your patients have inquired about appropriate vaccines.  Advise patients to always bring toilet paper as some countries require to pay for paper and in a emergency situation it is better to have ones’ own.  Bring hand sanitizer, running water may not be available for washing hands.  ALWAYS inquire about the safety of drinking water. TIP: Provide patients with CCFA TSA tips: TSA 101 Infused MedicationsNow is the time of the year that some of the Remicade infusion patients travel away for the winter or patients are home from college for extended periods of time.  2infuse.com is a website provided by Janssen Biotech.  This web site allows you to plug in the zip code of where your patient will be and gives a list of sites in that area that do infusions.  A word of warning; pay attention to the area where it states if they have Remicade infusion experience or not, some do not.  This is not an all-inclusive list of Remicade infusion centers, just ones that have registered with Janssen.  Check with the other biologic providers to see if they offer similar information or assistance through their website or help-lines. Resources for Health Maintenance General Health Maintenance Fact Sheet Visit your local chapter for information on our "Nutrition & IBD: Choices for Adults and Kids" - education program CCFA Nursing Education Programs Transitions in IBD: Graduating to Young Adult Care - 3/15/12
7. CCFA’s Information Resource Center (IRC) The IRC offers treatment, diet, flare management & other helpful information about Crohn’s disease and ulcerative colitis Freematerials, such as brochures & fact sheets Find doctors, support groups & education programs Information on financial resources Get help in 170 different languages Phone: (888) MY.GUT.PAIN (888-694-8872) Mon – Fri 9:00 am -5:00 pm (et) Email & Live Chat info@ccfa.org Online community: www.ccfacommunity.org IBD Management Choices http://www.ibdetermined.org Website: www.ccfa.org
8. Appeal Letters Download Customizable Appeal Letters for Your Patients. Sample letters include:
9. GI Buddy Disease Management Tool Disease management tool for tracking symptoms, treatment, diet, and lifestyle factors Report capability to view patient’s history and patterns Accessible online at www.ccfa.org/gibuddy and for download as a mobile app for on-the-go management!
10. CCFA on Social Media Facebook: http://www.facebook.com/ccfafb Twitter: http://twitter.com/ccfa YouTube: http://www.youtube.com/ccfa
11. CCFA Community Website Online Community for patients and caregivers: Discussion boards Online support groups “Ask an Expert” feature Customized IBD knowledge navigator www.ccfacommunity.org/
12. General and Adult Information Brochures include: Living with Crohn’s Disease Living with Ulcerative Colitis Diagnosing & Managing IBD Understanding IBD Medication Fact Sheets include: Diet & Nutrition Pregnancy & IBD Young Adults & IBD Biologic Therapy Influenza & IBD Financial Resources www.ccfa.org/science-and-professionals/programs-materials/patient-brochures/
13. Newly Diagnosed Kit The Facts on Crohn’s & Colitis Comprehensive, multimedia kit for newly diagnosed patients and loved ones Provides the basics on IBD and where to go for additional resources Includes a 36-pg booklet and DVD featuring fellow patients and IBD experts Web version available at http://www.ccfa.org/what-are-crohns-and-colitis/newly-diagnosed/
14. Pediatric Enduring Material Brochures include: A Guide for Parents A Guide for Kids and Teenagers A Guide for Teachers and other School Personnel Pete Learns All About Crohn’s & Colitis IBD & Me Activity Book Fact Sheets include: Managing IBD as a Young Adult Pregnancy & IBD Young Adults & IBD Pill Swallowing Techniques for Kids and Teens www.ccfa.org/science-and-professionals/programs-materials/patient-brochures/
15. CCFA Partners Partners is CCFA’s registry of patient-reported outcomes. The study is a comprehensive internet-based registry, designed to study patients with Crohn’s disease or ulcerative colitis under a single research initiative and is available for pediatric and adult patients. Encourage your patients to participate and be part of the cures by visiting: www.ccfapartners.org
16. Membership: Nurses join for $99 Nursing & Healthcare Professionals Benefits include: Free membership for patients Invitations to latest programs and information Subscription to the IBD Journal Discount to “Advances in IBD” conference Exclusive access to on-line “Decision Making” educational tool for patients considering biologic therapy www.ccfa.org/get-involved/become-member/professional-membership/