The Lybbaverse / colitis  

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.

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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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Let’s get healthier together

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Health is a team effort involving patients, families, care teams and researchers. It isn’t a one-way conversation in which a doctor makes a decision that a patient, without question, accepts.

Healthier Together is a campaign that encourages a collaborative approach to healthcare. Collaborative care unites the knowledge of patients and families, nurses and doctors, pharmacists and researchers in order to gain a fuller picture of each patient’s health. The result? Superior care for everyone.

Networks like ImproveCareNow are at the forefront of this new model of care. ImproveCareNow uses collaboration and data to drive improvements in the care and health of kids with Crohn’s disease and ulcerative colitis.

In partnership with ImproveCareNow, Lybba has built Healthier Together to support collaborative care. We’re collecting statements and stories in support of such care, and to demonstrate the value of networks like ImproveCareNow —not just for kids with Crohn’s disease and ulcerative colitis, but for all patients with chronic illnesses.

Our goal is to collect 1000 statements by September 15. Your voice will help change the way we think about healthcare in America!

We need your voice. Visit HealthierTogether.org today and take a moment to share your story about how collaborative care has helped you or a loved one. 

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