Take Charge Magazine

Parenting Plus: When Your Child Has IBD

Spring 2010

YouCan: Can:challenge challenge • change You change••cure cure

HALF MARATHON TRAINING PROGRAM

13.1 miles

Benefiting Crohn’s & Colitis Research For over 40 years, the Crohn’s & Colitis Foundation of America (CCFA) has paved the way toward finding a cure for Crohn’s disease and ulcerative colitis. Team Challenge, our Half Marathon Training Program, raises the critical funds needed to make these diseases history.

Whether you’re a novice or advanced runner or walker, you’ll put your abilities to the test while being part of an amazing team. You’ll make new friends and great memories while helping yourself and the 1.4 million Americans living with Crohn’s & colitis.

Join now for summer 2010!

Visit ccteamchallenge.org, or call 866-931-2611.

contents Parenting Plus: When Your Child Has IBD

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daily living 22 | Announcing World IBD Day: Making IBD Awareness Global

eating right 20 | Nutrition in a fish bowl

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hero profile 7 | Scott Speed

features

Hero Profile: Scott Speed NASCAR Driver

5 | Viewpoint: Renewing Our Commitment to Advocacy 8 | Capitol Corner: Think Globally, Act Locally 12 | Parenting Plus: When Your Child has IBD

our mission To cure Crohn’s disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases.

Editor Marie Granieri Art Direction and Design Rosemary Bianculli

Editorial Board Gary Sinderbrand Chair of the National Board Richard J. Geswell President Kimberly Frederick, LCSW, MSW Vice President of Patient and Professional Services Marjorie Merrick Vice President of Research and Scientific Programs

Medical Advisors Lloyd Mayer, M.D. Chair, National Scientific Advisory Committee Sunanda V. Kane, M.D., M.S.P.H. Chair, Patient Education Committee Jeffrey A. Katz, M.D. Co-chair, Patient Education Committee

Contributing Writers Susan J. Singer Ariella Levine

Co-founders Irwin M. & Suzanne Rosenthal William D. & Shelby Modell Henry D. Janowitz, M.D. National Headquarters 386 Park Avenue South New York, NY 10016-8804 (800) 932-2423 (212) 685-3440 Web site: www.ccfa.org E-mail: info@ccfa.org

The Crohn’s & Colitis Foundation of America, Inc. (CCFA) cannot be held responsible for errors or for any consequences arising from the use of the information contained in Take Charge. The appearance of advertising in this magazine does not constitute an endorsement or approval by CCFA for the quality of the product advertised or of the claims made for it by its manufacturer. Take Charge (formerly Foundation Focus, ISSN #0897-6759) is published by CCFA, 386 Park Avenue South, New York, NY 10016-8804. This publication is protected by copyright and may not be reproduced in whole or in part without written permission of CCFA. CCFA is a nonprofit organization.

FUNDRESEARCH RESEARCH FUND RAISE RAISEAWARENESS AWARENESS CHANGE CHANGELIVES LIVES

Bring Us Closer to a Future Free from Crohn’s & Colitis Register Today! www.cctakesteps.org

Why Walk?

• Over 1.4 million American adults and children suffer from Crohn’s disease and ulcerative colitis, life-changing digestive diseases.

• Symptoms include abdominal pain, diarrhea, and weight loss. Many patients require hospitalization and surgery.

• You can make a difference. When you walk, you’ll help raise funds for a cure!

We’rewalking walking at at 80 100sites sitesnationwide. nationwide Join this your Spring.

We’re Join your walk today! local Take local StepsTake walkSteps today!

FROM THE PRESIDENT

viewpoint

Renewing Our Commitment to Advocacy Spring is an optimistic season. It is the time of renewal for nature, and it also motivates all of us to harness our dormant energies and move forward. CCFA approaches this optimistic season with a renewal of our commitments to advocate for IBD patients. On May 19th, we’ll journey to Washington, D.C., for our eighth annual “Day on the Hill.” This year’s event is especially critical as we will be asking our nation’s legislators, face-to-face, to support the “IBD Research and Awareness Act.” At press time we had 100 co-sponsors of this crucial legislation in Congress, but we still need more.

We are grateful to our advocates who will attend “Day on the Hill,” and to all of our supporters who have reached out through the Internet, phone calls, or letters to support IBD legislation in the past year. Please continue your efforts. We all know we need to work harder to advance awareness of IBD, and Congress in particular needs to know how badly patients need support and hope for a cure.

IBD doesn’t end at America’s borders—in fact, over five million people worldwide are affected by Crohn’s disease and ulcerative colitis. On May 19th, patient organizations from 27 countries on four continents will come together to spread awareness and hope for a cure on the very first World IBD Day. CCFA will take the messages of World IBD Day to our nation’s legislators as part of “Day on the Hill,” so they will be aware of how much their actions can help not only Americans, but patients worldwide. For more details on these efforts, please read our feature on World IBD Day as well as our “Capitol Corner” column.

This issue of Take Charge focuses on how families cope with a child’s diagnosis of Crohn’s disease or ulcerative colitis. CCFA has made the largest financial commitment in our history to our Pediatric Risk Stratification Initiative.

This clinical research promises to make the future easier for the thousands of families affected by pediatric IBD. You, too, can use this spring season of optimism to move IBD efforts forward, both nationally and at home. Become part of a family-friendly CCFA Take Steps Walk event in your area, or get fit and help others as part of our Team Challenge half marathon training program. If you haven’t done so already, take five minutes to go online and write your legislators about supporting the “IBD Research and Awareness Act.” Expand your knowledge of IBD by viewing a CCFA Webcast online, or attending an eductional seminar held by our local chapters around the country. As the groups behind World IBD Day will tell you, there is strength in numbers. Whatever you choose to do, know that you are acting as part of a community, not only nationwide, but worldwide as well.

Richard J. Geswell President

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Now You Can Cycle for a Cure…

Join Team Challenge Cycle in Ontario, Canada!

Train in the Summer, Cycle in the Fall!

This fall, Team Challenge Cycle will kick off its inaugural season with a beautiful 50-mile race in Ontario, hosted by Centurion Cycling on September 19, 2010. Raise funds for Crohn’s disease and ulcerative colitis while riding with our national team in the picturesque Blue Mountains, just two hours north of Toronto and right at the base of the Niagara Escarpment.

How does Team Challenge Cycle work?

• Our training ensures that novice athletes can finish the 50-mile race and more advanced athletes can prepare for a personal best.

• Through weekly coaching calls on topics such as nutrition, injury prevention, and supplemental core training, we will prepare you with a lifestyle program that will get you across the finish line healthy and happy.

• You’ll receive tips and support to raise funds for the 1.4 million patients living with Crohn’s and colitis.

For more info, call 866-931-2611.

Visit

e.org halleng c m a e t cc rmation

info for more r new o on u e Cycle halleng Team C program. training

hero profile

Scott Speed Racing around the track—and to help find a cure but while in Europe, racing with Formula One, a crucial turning point occurred: a medication was found that relieved Scott’s symptoms, and helped put him on the path to remission.

What’s in a name? When Scott Speed was a young boy, he knew his name might have something to do with his destiny. Reared in a family that embraced kart racing and loyally followed European Formula One openwheel competition, Scott knew he wanted to succeed by being the fastest. He took on racing as a serious vocation to achieve the highest goal: pure and uncompromised speed. That is precisely what Scott delivered and what enabled him to enter an elite, competitive arena when he emerged in the Formula One driver search of 2003.

In 2006, Scott became the first American-born “F1 regular” since 1993 and spent two seasons with Team Red Bull in Italy. He returned to the U.S. in 2007 and has since raced in the NASCAR Development, ARCA Series, and the NASCAR Craftsman Truck Series. Speed secured a seat for the 2009 Sprint Cup season where he battled for rookie of the year in the No. 82 Red Bull Toyota. He scored his first top-five finish in April 2009 at Talladega. And, to top it off, he married in 2009 in an unforgettable celebration of life and love and endless possibilities.

Driving for IBD Scott has also found time to become an IBD activist, collaborating with CCFA frequently on awareness initiatives. Last year, he supported the “Fast and Furious” Take Steps Fundraising Contest, helping to drive fundraising for Take Steps beyond our normal Walk season. This year, Scott,

along with pro golfer Heath Slocum, is working toward the goal of raising $70,000 for IBD research in a creative new program sponsored by the pharmaceutical company Shire.

As part of the “Driving for IBD” program, Shire will donate $1.00 for every IBD text message sent in May, up to $10,000. An online racing game, featuring Scott on a virtual race course, is also being created to help raise funds and educate players about IBD. For every completed game, Shire will also donate $1.00, up to $30,000.

Last but not least, during the 2010 PGA Tour, Shire will also follow Heath Slocum and make a donation for every drive over 300 yards, up to $30,000.

Keep track of these great programs by visiting DrivingforIBD.com, which will feature updates on Slocum’s progress and Scott’s new virtual racing game!

DrivingforIBD.com is scheduled to launch in May. We appreciate Scott and Heath for lending their competitive zeal to the cause of the 1.4 million Americans and their families who are battling IBD. Watch for more news about DrivingforIBD.com at www.ccfa.org.

One would think this was truly a fulfillment of a destiny. But Scott’s racing dreams hit a speed bump when he became ill, halfway through his first season, with ulcerative colitis (UC).

Getting Behind the Wheel Scott soon discovered the necessity of being as relentless a driver of his recovery from UC as he was of his own racing equipment. It took time,

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capitol corner

CCFA Advocacy: Think Globally, Act Locally Current events have demonstrated how grass-roots advocacy can bring about new legislation that will make a world of difference in the lives of families living with chronic diseases. The health care reform bill, signed by the President in March, has, at its core, the majority of the principles that CCFA advocated for as part of its Statement of Principles for Healthcare Reform.

Phased in over time, the legislation will provide chronic disease patients with relief from pre-existing coverage exclusions, annual and lifetime benefit caps, medical underwriting, policy rescissions, and extended waiting periods for coverage. In addition, the bill requires insurers to cover young adults on their parent’s policy until age 26, and cover routine medical costs associated with participation in clinical trials. The legislation also established a “Cures Acceleration Network” at the National Institutes of Health to speed the translation of basic research findings into new treatments and cures for complex diseases. For more details of the healthcare bill, visit www.ccfa.org/advocacy/healthcare.

Let’s Look Ahead This is not the time to be silent. In fact, the colossal task recently accomplished in Congress may have overshadowed other health-related bills, such as CCFA’s IBD-specific legislation. The IBD Research and Awareness Act, H.R. 2275 in the House and S. 981 in the Senate, needs your ongoing support to bring it to the finish line. Our goal is to obtain 170 co-sponsors, and, thanks

8| TakeCharge

to your efforts, we are over halfway there. We currently have 100 co-sponsors of this legislation. We still need your help! Visit our Web site to reach your local legislators online—it takes just five minutes to send a message that can help millions. Get started at www.ccfa.org/advocacy.

If you’d like to speak with your legislator in person, start with our Advocacy Toolkit, found online at www.ccfa.org/advocacy/AdvocacyToolkit.

This toolkit will give you all the materials you need to make an effective visit, including talking points, an overview of the “IBD Research and Awareness Act,” meeting request forms, and thank you notes to send to your legislator after your visit.

A Very Special “Day on the Hill” Our annual visit to our nation’s capitol takes place on May 19. As part of their meetings with our legislators in the halls of Congress, our advocates will discuss the first World IBD Day, which we are also celebrating on May 19. In honor of recognizing the five million people worldwide who are waiting for a cure, we are requesting support for our bills and appropriations. At a special dinner, two of our Congressional supporters will speak about how important it is to promote awareness of Crohn’s disease and ulcerative colitis through World IBD Day.

Help to Restore IBD Research Funding at the Centers for Disease Control and Prevention (CDC) We need your help to protect a critical federal program benefiting the IBD patient community. For the past five

years, Congress has provided funding to the Centers for Disease Control and Prevention for an IBD Epidemiology Program. This unique program supports research conducted by CCFA on the incidence rates of IBD, why the course of the illness varies among individuals, and what factors may improve patient outcomes. Gathering this data is critical to advancing our knowledge of IBD and is essential to the quest for better treatments and a cure. Unfortunately, continued funding for this research is in serious jeopardy because President Obama’s fiscal year 2011 budget recommends an elimination of the program. The good news is that Congress will have the final say as to whether the program continues to receiving funding.

That is why we need you to take action today. Contact your representative and senators to encourage them to fully fund this important initiative!

Please visit http://bit.ly/9F5ABk to send an e-mail about this issue to your legislator.

CCFA WANTS YOU TO SUPPORT ADVOCACY

TAKE ACTION NOW: WWW.CCFA.ORG/ADVOCACY

Advocacy is a major component of the Crohn’s & Colitis Foundation’s mission. Our advocates are not only patients, but family members, friends, caregivers, and doctors who want to make their voices heard and see a future free from Crohn’s and colitis. By sharing personal stories and providing crucial information about the impact of these devastating diseases, our advocates inform and inspire elected representatives in Congress.

Make a difference: take action now!

Interested in

Clinical Trials?

Visit www.ccfa.org/trials Clinical trials of new medications help:

• people with Crohn’s disease or ulcerative colitis to actively participate in the search for the cure for these diseases • physicians to find new medications that will help their patients • pharmaceutical and biotechnology companies to determine the safety and effectiveness of their medications Finding trials in your area can be difficult. To help, CCFA offers the IBD Clinical Trials search engine. The engine lists ongoing trials and much more.

Visit http://www.ccfa.org/trials to find the trials in your area.

The number of children under the age of eighteen diagnosed with IBD has doubled in the past 10 years.

Doubled.

Think about that.

Help us do something about it: support the Crohn’s & Colitis Foundation’s Pediatric Network Initiative.

Our Pediatric Network Initiative is a multi-institutional, collaborative study which will collect and analyze data on kids with IBD around the country. This information will help physicians treat children by having a more thorough understanding of how an individual child will respond to specific treatments.

In other words: this project can help our sick kids to get better faster.

Such a large and complex project requires significant funding to achieve its critical goal. By choosing to support the Pediatric Network, you will help to transform the standard of care for all IBD patients—helping them to live healthier and happier lives.

To support the Pediatric Network Initiative, or for more information on this or other life-changing programs as CCFA, please call 800-932-2423, or visit us online at www.ccfa.org/donate.

Parenting Plus: When Your Child Has IBD Most parents will tell you that parenthood is the single most challenging role of their lives. Even compared to training for the Olympics, parenting requires development of extraordinary skills and dedication to long-term goals.

Parents of all backgrounds share a common prayer for bringing healthy children into the world and watching them thrive. Yet statistics tell us that 10 percent of children in this country live with some form of chronic illness.

Parents facing the news of a child’s diagnosis of an inflammatory bowel disease (IBD)—either Crohn’s disease (CD) or ulcerative colitis (UC)—may think that they do not possess the skills or abilities for this added challenge. But experts in the field of IBD have another, most hopeful, perspective to share.

The Foundation for Healing According to Dr. Athos Bousvaros, M.D., Director, Center for Inflammatory Bowel Disease at Children’s Hospital, Boston, parents continually contribute to successful outcomes in managing IBD. He says: “The number one role of parents is to support the child. It is parents, not us, who are there on a daily basis, giving pills, taking children to school and doctor’s appointments, dealing with day-to-day aspects of chronic illness like, ‘My tummy hurts, should I stay home from school?’ or, ‘should I play sports, today?’” The number two role of parents is to hear the various medical options, critically evaluate them, and give feedback on how they would like to run things. We are constantly trying to balance risks and benefits of treatment options. The better treatments have more side effects. Parental input is most important. Parents need to become educated and involved with these decisions.”

Only about 20 percent of IBD patients have known blood relatives who have had these diseases. For most families, it is a shocking diagnosis. Dr. Bousvaros offers advice to parents concerned about gastrointestinal symptoms and the possibility of IBD in a sick child: “When it is clear that there is no viral or bacterial illness present, your pediatrician should refer the family to a pediatric gastroenterologist a subspecialty of gastroenterology, that combines the knowledge of children’s development and physiology with experience in diagnosing and managing IBD for the long term.”

When there is no pediatric gastroenterologist in the community, Dr. Bousvaros believes families should make the commitment to travel to a location where there is a capable pediatric gastroenterologist or, as an alternative, seek out an adult gastroenterologist who is comfortable with seeing kids. It is important to ask how many patients with Crohn’s disease (CD) and ulcerative colitis (UC) the physician sees every year. CCFA can be helpful with locating physicians who are actively treating patients in your area.

IBD specialists will tell you that diagnosed patients always ask the same two questions: “Will I always be sick?” and “Will I always need to take medicines?” Dr. Bousvaros answers: “No, you will not always be sick, if we do our job properly.” And, “Yes, indefinite long-term medications are a part of your treatment.” He adds: “Kids can get well with medications; however, relapse will surely follow lapses in use of medication.” He also advises that even when a child is doing well, medical follow-up is crucial. Children with CD or UC, especially milder cases, may feel well and still have inflammation.

At minimum, a child should be seen twice per year. In other cases, appointments may be quarterly, monthly, or even twice a month with more aggressive treatments.

Communication is the common thread in the fabric of successful medical treatment. If the doctor offers explanations in terminology that you don’t follow, ask that she explain it in more simple terms. Dr. Bousvaros believes that the most critical points about IBD can be made simply. He says: “We understand a little bit about the causes—genetics and intestinal bacteria interact to cause chronic inflammation —and medications can dampen or reduce its severity. Remember that just because you have asthma, you don’t wheeze all the time. With IBD, you don’t bleed constantly either.” He believes that if parents come back from appointments confused, they need to go back to the doctor—with questions in writing—and make sure they get answers. If the answers are still not clear, it may be time to locate another physician.

At every age, a child has the ability to grasp the fact that he or she is ill.

CCFA’s Web site offers educational materials for age-specific brackets that can help children who have IBD and their siblings. Dr. Bousvaros is quick to point out that roughly two-thirds of pediatric patients are in the 10-18 age bracket. This is significant as these children will become young adults as they learn to live with IBD. Parents

need to be mindful of the requirement to transfer responsibilities for health management to the child during this phase. By the age of 16, the transition needs to be underway.

Your Professional Team Families must be confident in their professional team. Pediatric gastroenterologists, pediatricians, nurses, hospital social workers, and school nurses are typical key players. The team may also include a clinical psychologist, nutritional counselor, and complementary therapists (such as acupuncture or biofeedback specialists). Education programs taught by nurses and doctors, offered by the community hospital or through CCFA, can benefit the entire family.

Janis Arnold, MS, LICSW is dedicated to all of the IBD patients at Children’s Hospital, IBD Center in Boston, working with over 700 patient families every year. Janis says: “Our program plays off the philosophy that you will need a team to treat the whole person.

Although not every hospital has a program like ours, we also coach parents to find a clinical behavior specialist who works with families with chronic disease in their local community, as coping skills in these diseases are transferable.” Janis is a strong proponent of providing “anticipatory guidance” at the time of diagnosis, to prepare families for what lies ahead in terms of events and feelings. In her role, she advises doctors on how each child with IBD can best learn the disease, self-manage, and what they will be able to do to monitor and look for side effects and their general health literacy. She always involves siblings.

Janis adds: “Behavior-oriented therapy is crucial because mental health can be a barrier to healing. Guided imagery and relaxation techniques can be very useful. I provide this service in addition to identifying other, more widely acknowledged barriers such as financial and insurance resources or a school interface, which social workers typically address.”

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Become the Captain of Your Own Dream Team On the home front, Janis is also a strong believer in the need for a functional team. She visualizes it in concentric circles—with patient and parents in the center, and advises, “The outlying circles include individuals like guidance counselors, clergy, family members, and friends. Parents need to know they can go to someone for a bit of laugh therapy, reality testing, or to counter temptations to ‘catastrophize’ their situation. We acknowledge at the onset that it is more than pills that determine the outcome. We want to validate that when parents find they need extra support, they do not feel inadequate or foolish to ask for it.”

Jacqueline Spencer, MSW, Manager of CCFA’s Information Resource Center (IRC) agrees: “Going through the diagnosis and what follows alone will set you up for burnout. Creating a team is essential. It is the parents who head up the team effort that benefits their child. The core of the team is your nuclear and extended family. This includes all siblings, available grandparents, aunts, uncles, and cousins. All family members will need education about the disease. This is where CCFA materials, available at www.ccfa.org, can be very handy.”

Parents will undoubtedly need to grow their team beyond family resources. You may ask parents in your child’s circle of classmates, your neighbors, or members of your religious community. You will require a network of emergency helpers—or an occasional helping hand—sooner or later. Jackie Spencer reminds patients: “The key is to plan and put a team into place before you obviously need someone to pick up your

14| TakeCharge

other children at school, help with food shopping, or provide a casserole dinner while you are occupied with your sick child at doctor’s appointments or in the hospital.”

Jackie also advises parents to be selective in assigning roles to different people, basing it on their skills and personalities. CCFA suggests a Web site called lotsahelpinghands.com that helps parents of children with chronic disease consider more options for building their support team.

Prepare for Success Through Education Education is the gateway to success for all youngsters, regardless of their health status. However, parents will need a plan of action to ensure that the school experience supports their child in every way. Jackie Spencer advises all parents of children with IBD: “You need to become a school advocate. CCFA has school-specific literature available for you to provide to teachers and guidance counselors.

Our “Teacher’s Guide” is available on CCFA’s Web site. Schedule a visit with your guidance counselor and school nurse. Don’t assume they have knowledge of IBD. The guidance counselor will have to put in place a 504 plan, provided under the Americans with Disabilities Act (ADA), that entitles your child to equal and fair education. General accommodations may include bathroom location.

This is a critical step, as you can never be certain when a longer absence may require tutoring or other home school provisions.”

Communications with school representatives, such as teachers, school nurses, principals, and guidance counselors, need to be updated annually, as chronic disease can change with the passing years.

The Power of Support Groups There are many stories to share among parents with IBD experience.

Lauri Mantooth of Orange County, CA was “floored” when son Nick and the family participated in a weeklong CCFA Camp Oasis program for children with CD and UC, recommended by their physician. She always had thought she had an extraordinary support system in place when Nick was diagnosed with CD five years ago. There was extended family in close proximity to lend a hand whenever she and her husband needed help through a rocky several years, punctuated by medication changes and hospitalizations. However, they were all novices to Crohn’s disease.

“No one really knew about CD—or could relate to it—so we made it up as we went along,” says Lauri. At Camp Oasis, Lauri found the missing ingredient to successful parenting of a child with IBD—the peer group of other parents with children who shared similar histories. It was truly a revelation and a life-changing experience.

Lauri has since committed herself to helping other recently diagnosed families find what she missed five years ago. She and her mom created a “Family Hugs” program, including a CCFA welcome packet that contains handmade blankets crafted by Lauri and other volunteers. Her purpose: to get out a clear message that there are caring people—other parents— who can help you in this ordeal, and that you can find them through CCFA. Lauri adds: “I thought of myself as independent, but a support group really makes it a lot easier.”

Lauri’s experience is validated by Children’s Hospital in Boston where they often have an experienced parent mentor a less experienced parent. “It is very effective,” says Dr. Athos Bousvaros.

“ Parents need to know they can go to someone for a bit of laugh therapy, reality testing, or to counter temptations to ‘catastrophize’ their situation. ...when parents find they need extra support, they do not feel inadequate or foolish to ask for it.”

—Janis Arnold, MS, LICSW

“ Children need to be told that they are not their disease. The disease is only one part of so many other aspects of the person that need to be celebrated and fostered.” —Frank Sileo, Ph.D.

Looking at the Whole Person Frank Sileo, Ph.D., a clinical psychologist and Executive Director of The Center for Psychological Enhancement in New Jersey, embodies the concept of considering the whole person when treating Crohn’s disease and ulcerative colitis. Diagnosed with CD himself at age 20, he chose a professional path that would enable him to help children live normal lives in spite of some very serious setbacks. When you speak with Dr. Sileo, known as “Dr. Gutsy” to the children he treats, you are struck with how engaged he is in proactively confronting even the smallest issues.

He works with the whole family, because, as he explains, his best treatment would fail if the family could not support the behaviors he is aiming to encourage.

whole and make it healthy. As an alternative to behavioral therapy, he believes that parents should, at the very least, avail themselves of any support group opportunity or create one with the help of their physicians.

Dr. Sileo works to develop selfadvocacy in the child from the youngest age. He treats children even under the age of five with some astonishing results. Through guided imagery and relaxation, he helps them to manage difficult toilet experiences and become kindergarten-ready.

Not surprisingly, many parents tend to be overprotective of children with a serious chronic disease. Dr. Sileo cautions his families that this could be a big mistake. Even at the youngest ages—a toddler for instance—should work through developmental tasks. He states: “If you treat your child like a piece of glass, they will act like one.” According to Dr. Sileo, the age of the child should dictate parental behavior, not IBD. Discipline does not change.

Children need to try out for sports and school plays and modify their roles where necessary to participate. They need to keep up with schoolwork. He encourages children to be fighters and self-advocates and offers his own history as a role model to growing youngsters. He teaches them to ask to “have it their way” when ordering food, without cheese or French fries, and raise the question of toilet location when they are outside of the school building.

Dr. Sileo explains why families with IBD need to be proactive in looking for the type of support he and others might offer: “This is a very overwhelming experience that causes discomfort, embarrassment and shame. In diagnostic examinations, boundaries are crossed with colonoscopies and invasive procedures. He goes on to explain, “Children may see themselves as defective. They need to be told that they are not their disease. The disease is only one part of so many other aspects of the person that need to be celebrated and fostered.” It is the role of a “Dr. Sileo” to integrate all the parts of the

Is there a common element that can be identified in successful parenting of children with IBD? Janis Arnold, LICSW, who has become acquainted with over a thousand IBD patients in her job and through CCFA events, believes that outlook and anticipation are key. When parents visualize a good family life and successful future, they are less likely to fall into the trap of feeling helpless and hopeless. Dr. Sileo would add that parents need to encourage their children to see themselves as something other than a medical diagnosis, “that CD and UC are only a part of who they are, not everything.”

By laying the foundation for good medical care, developing a functional team and support system, and addressing the broader picture of the whole child and the whole family, parents can indeed get on with the most challenging role of their lives: being parents.

Resources Right for You The following educational publications are available at CCFA’s Web site: www.ccfa.org/info/brochures: • “A Guide for Parents” • “A Guide for Teachers and Other School Personnel” • IBD & Me: An Activity Book for Kids • Pete Learns about Crohn’s and Colitis (educational comic book for kids and teens) CCFA also recommends Toilet Paper Flowers: A Story for Children about Crohn’s Disease by Frank Sileo, Ph.D., available at bookstores or at www.ccfa.org/shop.

For online help, check out our “Parents and Caregivers” forum at our free support site: www.CCFACommunity.org.

For other resources, please contact our Information Resource Center, available Monday through Friday, 9:00 am-5:00 pm EST, at 888-6948872.

TakeCharge | 17

5

give

change lives TEXT CCFA TO 90999

CCFA has a new, convenient way for you to help create a future free from Crohn’s and colitis! With a simple text message, you can make a $5.00 donation to the Crohn’s & Colitis Foundation by texting CCFA to 90999.

To make your donation: • Text CCFA to 90999 • Confirm your donation • Reply YES to complete Each $5.00 donation will be added to your next mobile phone bill, and you can donate the $5.00 amount up to 5 (five) times per monthly billing cycle.

Thank you for your gift, and for all that you do to help support CCFA! A one-time donation of $5.00 will be added to your mobile phone bill or deducted from your prepaid balance. You may also receive up to one message per day from CCFA Alerts. Msg and data rates may apply. All charges are billed by and payable to your mobile service provider. Service is available on most carriers. Donations are collected for the benefit of CCFA by the mGive Foundation and subject to the terms found at www.mGive.com/A. To unsubscribe, text STOP to 90999; for help, text HELP to 90999.

Powered By

Text CCFA to 90999!

IBD&She Focusing on Living While Managing IBD A program for women and their loved ones, hosted by two women physician experts and researchers in IBD

Co-sponsored by Robert Michael Educational Institute LLC and Postgraduate Institute for Medicine

Free Education at Your Fingertips!

Learn more about women and IBD from physician experts Sunanda V. Kane, MD, MSPH, and Uma Mahadevan-Velayos, MD, who discuss IBD management issues and answer audience questions during an interactive question-and-answer session.

Our Speakers: Sunanda V. Kane, MD, MSPH Associate Professor of Medicine Clinic This activity is Mayo supported

by College of Medicine an educational Rochester, grant from Minnesota

Uma Mahadevan-Velayos, MD Associate Professor of Medicine University of California, San Francisco (UCSF) Director of Clinical Research UCSF Center for Colitis and Crohn's Disease San Francisco, California

This FREE educational webcast will answer important questions about women with inflammatory bowel diseases (IBD), including: • What are important gender issues in IBD? • How does IBD affect intimacy and sexuality?

• What is the impact of IBD medication on fertility and pregnancy?

To view this program and other important webcasts, visit www.ccfa.org/info/webcasts.

Co-sponsored by Robert Michael Educational Institute LLC and Postgraduate Institute for Medicine

This activity is supported by an educational grant from

GO GREEN! Visit www.ccfa.org/webcasts/gogreen to receive “paperless” e-mail invitations for future Crohn’s & Colitis Foundation of America’s education programs.

Developed and managed by Robert Michael Educational Institute LLC 05-10-241-TL

eating right

Nutrition in a fish bowl (and a healthy dessert!)

The value of eating fish is widely touted, but fish are not all created equal. Take tuna, for instance. Known to most Americans through the popular use of canned tuna fish in salads and sandwiches, fresh tuna is now widely available year-round in supermarkets and fish stores. Fresh frozen tuna is also an option. Tuna is a terrific source of minerals and B vitamins, but it is also a source of omega-3 fatty acids, a rare component in our American diet. Although our diet typically offers an abundance of omega-6 fatty acids 20| TakeCharge

(present in many oils), our bodies require an optimal balance of omega-3 and omega-6 fatty acids for health maintenance. Research shows that omega-3 fatty acids play a crucial role in cardiovascular health, and has also highlighted their anti-inflammatory properties, critical in many chronic diseases such as IBD. Bear in mind that there have been health issues raised about the mercury levels in fish, including tuna. To learn more about the safe consumption of tuna and other fish,

visit www.oceansalive.org and look for information about which kinds of tuna are safest.

Our “fish bowl� is a versatile, savory tuna stew, delicious with crusty bread for dipping.

It may be served immediately hot, refrigerated and reheated, or even enjoyed cold in hot weather. It can be a first course or a main-course, onedish supper. For a refreshing dessert, enjoy a slice of cheese-free cheesecake, without refined sugar.

Bon appetit!

Fish Bowl 1 ½ lbs fresh or frozen, thawed tuna steaks, washed and cut into 2-inch chunks or 3-inch strips 1 lb of Yukon gold or Eastern potatoes, peeled, cut in half, and sliced into half-inch slices 1 lb of carrots, peeled, diagonally sliced into half-inch pieces 1 14-ounce can of peeled, seeded, diced tomatoes 2 cloves of peeled whole garlic 1 peeled shallot or half of an onion Salt and pepper to taste Bay leaf 1-2 tablespoons of extra-virgin olive oil 1 ½ quarts of water 1. In a five-quart enameled or stainless steel soup or stock pot, add water, potatoes, carrots, shallot (or onion), and garlic cloves. Bring to a boil, then boil slowly for 30 minutes.

2. Add canned tomatoes to the pot and continue to cook for 15 minutes.

(Note: you may prepare this soup base in advance and refrigerate.

Reheat and continue the recipe when you are ready.)

3. Introduce cut fish to broth and simmer for 30 minutes. Serve immediately in soup or pasta bowls or refrigerate until you’re ready to serve. If promptly refrigerated, it should keep for about 24 hours. Reheat over low heat or serve cold. Add a few drops of olive oil to each plate for extra flavor and nourishment.

1. Preheat oven to 350 degrees.

Makes 4-6 servings.

4. Beat egg whites until stiff but not dry with a dash of cream of tartar.

Cheese Cake, Sans Cheese

5. Gently fold prepared egg white meringue into tofu-banana mixture.

When well-blended, pour into prepared pan or ready-made pie plates.

You may use two store-bought graham cracker pie crusts for this recipe or pulverize graham crackers or a cracker of your choice in a blender.

Coat an oiled 8- or 9-inch spring form pan with crumbs and a touch of cinnamon for added flavor.

4 ripe peeled bananas ½ tsp of vanilla 2 19-ounce packages of regular tofu 2 tablespoons of honey 3 large eggs, separate yolks from whites ¼ tsp of ground cinnamon Cream of tartar

2. Blend bananas until smooth in a food processor or blender and transfer to large bowl.

3. Blend tofu, honey, cinnamon, vanilla, and egg yolks until creamy and mix well with banana puree.

6. Bake for 45 minutes. Test center with toothpick insertion. It should be dry when the cheese cake is done.

Leave in the oven (turned off) until cake is cool.

Refrigerate for at least four hours prior to serving, then take out of pan or pie plate. Enjoy with any fruit toppings of your choice.

Makes 8-12 servings.

Got guts? Gear up!

JOIN THE RIDE FOR CROHN’S AND COLITIS Join Get Your Guts in Gear (GYGIG) for a 3-day experience that raises awareness and funds for people with Crohn’s disease, ulcerative colitis, or people who have had ostomy surgery. GYGIG’s 210-mile rides are fully supported, scenic, and designed to create an empowering community—gear up for an unforgettable adventure!

To ride, crew, or volunteer, call 1.866.9iGOTGUTS (1.866.944.6848) or visit www.IBDride.org.

June 11-13, 2010 New York’s Hudson River Valley August 6-8, 2010 Pacific Northwest/Seattle area October 1-3, 2010 Midwest/Southern Wisconsin Benefiting:

Presented by:

Sponsored by:

Advocacy for Patients with Chronic Illness, Inc.

© 2010 Get Your Guts in Gear, Inc. All rights reserved.

This is a paid advertisement.

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Taking IBD Awareness to the Global Stage

“There is strength in numbers.” That was the thinking behind the first-ever World IBD Day, created by leading IBD organizations around the globe.

Designed to boost awareness of Crohn’s disease and ulcerative colitis, this worldwide event takes place on May 19, 2010. The event has been spearheaded by representatives from the USA, Canada, UK, Australia, and Brazil who met during Digestive Disease Week in Chicago last June to lay the foundation.

Patient-based organizations throughout the world have strikingly similar challenges. All have worked to extend knowledge and awareness of IBD into the general community, government institutions, schools, colleges, and workplaces. IBD experts within our own country, like Frank Sileo, Ph.D., a clinical psychologist in Ridgewood, NJ tell us, “When you meet with patient families around the country, the concerns and questions are the same.

The accents and climate may change, but the issues are constant.”

dozens of countries around the world to support greater awareness of World IBD Day, and all its activities.

Dr. Charles Bernstein, campaign leader of the WGO’s World Digestive Health Day 2010, adds: “The evolution of IBD in emerging nations may provide clues to its etiology, so it is incumbent on us to ensure that diagnosis and management of IBD can be optimized everywhere.”

For CCFA, the launching of World IBD Day during the Digestive Disease Week (DDW) gastroenterology confer-

27 countries.

4 continents.

May 19, 2010.

IBD: Beyond Borders This observation applies around the globe. Languages may quickly multiply, but the patient experience remains very similar. Most diseases generally become visible at different times in different locations throughout the world. Changing and evolving environmental and social factors can account for this, as well as advances in public health and general healthcare, which enable detection. The experience curve with IBD may vary from country to country. This is another vital reason for creating a global connection among IBD patient foundations worldwide. There is so much to share, and sharing in turn creates a multinational support system and potential research synergies.

The World Gastroenterology Organization (WGO), which has over 100 member societies, will be celebrating the year of inflammatory bowel diseases (IBD) throughout 2010. The WGO is cooperating with patient-based organizations in

ence, held in New Orleans this year from May 2-5, is both a long-awaited goal and a new beginning for global collaborations. Rick Geswell, President of CCFA, comments: “We are thrilled to be officially joining forces with an international group of patient-based organizations that share in our goals of promoting IBD research, and supporting patients and families with the education they need to do well. It is crystal-clear that the challenges and opportunities of Crohn’s disease and ulcerative colitis do not stop at national borders.”

CCFA will be officially promoting World IBD Day during DDW at their conference exhibit. Marie Granieri, Senior Director of Marketing, explains, “Staff members and volunteers look forward to connecting with the hundreds of physicians who stop by to see what’s new. We will be asking them to use Twitter to show their sup-

port for IBD and build awareness through this high-impact social media network. Our goal is to generate a half-million ‘Tweets’ by May 19.”

Another important CCFA event that will be shaped by World IBD Day is “IBD Day on the Hill,” which takes place on May 19 in Washington, DC. CCFA advocates will be announcing the first IBD Day to legislators and staffers for added emphasis on the growing visibility of these diseases.

Celebrities Join the Cause To support World IBD Day messages, celebrities, such as NHL hockey player Fernando Pisani, are helping to decrease the isolation and stigma of IBD by sharing their experiences.

Since his diagnosis of ulcerative colitis, the Edmonton Oiler right winger has become an advocate for people with IBD in Canada. In his words, “Hockey players often take their health for granted. That all changed for me in 2005 when I started feeling sick. I lost about 40 pounds and lots of blood. You play 80 to 100 hockey games a year with pre-season and the playoffs and you start to feel invincible. Then something like this comes along and knocks you out.”

“We believe there are synergies in research endeavors and opportunities to ease patient suffering by sharing information and approaches with a worldwide community. World IBD Day is a great symbol for what we can achieve in a broader global context,” adds Marco Greco, Chairman of the European Federation of Crohn’s and Ulcerative Colitis Assocations (EFCCA), representing 23 European nations.

Spread a Message of Hope Help us spread the word: Log on to Twitter and post a message of support. Please include “#worldibdday” in your message so others can follow the trend and see what you’ve posted! Be sure to follow “worldibdday” on Twitter as well to see the latest news and postings. You can also check out the new World IBD Day Web site at www.worldibdday.org.

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Help Make Lifetime Memories at CCFA Camp Oasis!

This summer, CCFA Camp Oasis sites across the country will provide kids with Crohn’s and colitis a place to just be kids. They’ll join together for fun activities and create friendships that can last a lifetime.

Because all the kids (and most of the adults) have Crohn’s or colitis, this is more than a week of fun in the sun— it’s an opportunity for growth and learning that will serve them for years to come. Our campers will make new friends, see that they are not alone, gain confidence, and try things they never imagined they could do.

We want every child to have the opportunity to attend Camp Oasis. Your gift can help give deserving young campers the chance of a lifetime, and also support all the services that help children and adults with Crohn’s disease and ulcerative colitis.

To donate to CCFA, please visit www.ccfa.org/donate.

NonProfit Org U.S. Postage P A I D National Headquarters 386 Park Avenue South New York, NY 10016-8804 (800) 932-2423 | (212) 685-3440 www.ccfa.org | info@ccfa.org AOL Keyword: CCFA