The Lybbaverse / stacy-dylan  

A mother’s perspective on caring for a child with Crohn’s disease

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In response to the Healthier Together campaign to support collaborative care for IBD, Lybba board member Stacy Dylan wrote a letter about her and her son's experiences with IBD.

Stacy_Lowell

My 13-year-old son, Lowell, has Crohn’s disease. He was diagnosed at age two, after we saw a gastrointestinal doctor and Lowell had a colonoscopy and endoscopy.

Lowell has been on many medications, and at times his disease was well controlled. However the past three years have been the most challenging: hospital stays, tube feeding, TPN, medication injections, endless medical tests, procedures and appointments both in Los Angeles, where we live, and out of state.

Over the years, I have learned so much about Crohn’s disease and every aspect of Lowell’s treatment. In a sense, I became an expert at each phase of his care. I shared valuable information about my son with his doctor, information that is crucial to his ongoing treatment and care. I reached out to parents who had been through similar experiences with their children, and then parents started reaching out to me; even my son’s doctor asked me to talk to parents whose kids were facing treatments Lowell had already been through, such as a new injectable medication or tube feeding. Unfortunately, there is no shortage of newly diagnosed young children with Crohn’s.

I began to create my own informal network. I was involved in IBD charities and met even more people. In 2010, I decided to join Team Challenge, the endurance and fundraising program of the Crohn’s and Colitis Foundation of America, and started training for, and participating in, half marathons and triathlons. Along the way, my network expanded. I learned from the challenges of other parents and patients, and also helped them face those challenges. I felt connected. I had a community of people who understood. And I felt less alone.

Seeing me create a network of support, my son Lowell has become more open sharing his disease experience. He even made a video showing how he inserts his NG tube to share with other kids, parents and doctors. On most days, although facing challenges most kids his age would never have to confront, Lowell perseveres—participating in normal kid activities and maintaining his sense of humor.

While my son is not a patient in an Improve Care Now (ICN) clinic, I learned about the data sharing and tools these clinics are using to improve patient outcomes for pediatric IBD patients. Tracking symptoms, peer to peer support, community sharing of information—these are the things that create a more informed and connected patient, while increased remission rates let doctors know that this kind of sharing works.

Networks such as ICN are an invaluable tool, and prove that people coming together around a shared experience increases well being, good health and a strong sense of community. Each person’s voice is heard and valued, so both patient and doctor feel supported.

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Connecting to cure

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Stacy Dylan is committed to connecting not just patients but entire patient communities around chronic care. The nonprofit she co-founded, Connecting to Cure Crohn’s and Colitis (CCCC), is a perfect testament to this vision, spreading the benefits among many organizations.

This week, we had the honor of interviewing her (after she completed a triathlon in San Diego) about her Crohn's Disease advocacy and how she came to it. Her objectives tie in so well with Lybba's commitment to C3N, a chronic care collaborative, networking patients, clinicians, and researchers to influence behavior and improve outcomes. We're fortunate to have her dedication and expertise at Lybba. 

Jesse Dylan often relates the story of how he started Lybba because of his son's illness. You have a similar story around your own advocacy for Crohn's and Colitis. Could you share it with us?

I've recently started to research many different IBD related foundations and research centers. My inspiration is my 12-year-old son who was diagnosed with Crohn’s Disease when he was two, and my goal, when it comes right down to it, is to find a way for him to have a future that does not include dealing with this chronic condition. I have met so many others with IBD, parents, and other people with Crohn’s or Colitis and they too have inspired me on this journey.  Talking about the disease and our experiences has led me to meet different doctors, researchers, educators, and people who work with IBD patients.

What are your affiliations and goals? How do you get people involved? You mentioned fundraisers and participation in or promotion of clinical trials.

I've been affiliated with the Team Challenge Program of the Crohn's and Colitis Foundation of America (CCFA) and the Pediatric IBD Center thus far, and I'm also looking to other organizations to support. I've organized two music-related fundraisers and am planning two more for 2013. Part of our proceeds have funded research in Pediatric IBD at Cedars-Sinai, and the rest went to CCFA.

What is most vitally needed, in your opinion, to best support the cause?

Actually, what I think is that a lot of these organizations need to come together and share their information, data, and research, so that they can collaborate and share resources. Also, I think innovative and more aggressive research into medications, nutrition, and alternative therapies is needed. I know this is complicated with FDA rules and oversight, but it would help further the goal of finding treatments and cures. 

In the meantime, Connecting to Cure Crohn’s and Colitis (CCCC) is going to work to spread awareness about Inflammatory Bowel Diseases. Most people do not understand how serious and life altering Crohn’s and Colitis are. It's not just an upset stomach that can be alleviated by changing your diet. They're autoimmune diseases that can have an enormous affect on one’s quality of life and require hospital stays, bowel rest (meaning getting nutrition through tube feeding), and not being able to participate in normal activities. For children, this can be especially difficult and also usually affects growth.

So we're letting people know about these diseases, and raising money.

Tell us more about the decision to start your own nonprofit. 

I wanted to have more flexibility to distribute money I fundraise for different Crohn’s and Colitis related charities. That was our initial goal and we're just getting started. We also want to spread awareness and build a community around our efforts.

What's next for CCCC? 

We are starting to plan our children’s piano fundraiser which will be in January 2013, and our "Rock the Night" event, which will feature music by Jakob Dylan and special guests, a silent auction, food, drink, and fun!

For more information, contact Stacy Dylan 310-991-8593; Stacyjd@me.com.