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Welcome
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
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
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/programsmaterials/ibd-nurses/
December – IBD Awareness -----December Tips
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For our providers that take care of the senior population with IBD
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Travel tips:
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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,
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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.
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
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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.
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 Medications
Now 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
CCFA’s Information Resource Center (IRC)
• The IRC offers treatment, diet,
flare management & other
helpful information about
Crohn’s disease and ulcerative
colitis
• Free materials, 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
[email protected]
• Online community:
www.ccfacommunity.org
• IBD Management Choices
http://www.ibdetermined.org
• Website: www.ccfa.org
Appeal Letters
Download Customizable Appeal Letters for Your
Patients. Sample letters include:
Accommodations
School Accommodations
Employment Accommodation
Private Dorm and Bathroom
Disability
Social Security Disability
Resources
Life Insurance
Financial Resources
Mental Health Benefits
Ostomy Patient Assistance
Medication/Treatment
Certolizumab Pego Boost
Pediatric Adalimumab Therapy
Off Labeling
Adalimumab Dosing
Adalimumab for UC
Infliximab Dose Escalation
Tests/Procedures
Calprotectin
Capsule Endoscopy
Metabolite Level Testing
Infliximab & HACA
TPMT (Thiopurine Methyltransferase)
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!
CCFA on Social Media
• Facebook:
http://www.facebook.com/ccfafb
• Twitter:
http://twitter.com/ccfa
• YouTube:
http://www.youtube.com/ccfa
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/
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/programsmaterials/patient-brochures/
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-crohnsand-colitis/newly-diagnosed/
Pediatric Enduring Material
Brochures include:
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A Guide for Parents
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A Guide for Kids and Teenagers
A Guide for Teachers and other School
Personnel
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Pete Learns All About Crohn’s & Colitis
IBD & Me Activity Book
Fact Sheets include:
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Managing IBD as a Young Adult
Pregnancy & IBD
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Young Adults & IBD
Pill Swallowing Techniques for Kids and
Teens
www.ccfa.org/science-and-professionals/programs-materials/patient-brochures/
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
Membership: Nurses join for $99
Nursing & Healthcare Professionals
Benefits include:
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Free membership for patients
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Invitations to latest programs and
information
Subscription to the IBD Journal
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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/