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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  1. Megan

    Thank you, Stacy, for sharing your story. It would be wonderful for this sense of community to permeate all aspects of health care.

  2. Sami

    This is such a beautiful story – your son is lucky to have a mom as dedicated as you to making him feel better faster. As a young IBD patient myself, diagnosed in my early teens, I’m also a huge supporter of ICN. It may take a while, but if this work continues, I really believe that we’ll all be able to talk about IBD in the past tense one day. You go, Lowell!

  3. Patrick

    Such an inspiring story, thank you for being leaders in this movement to transform healthcare for good.

  4. Stacy, this is so fantastic and inspiring. I did not even know some of it. I’m so proud of you. And it is true that by doing what you are doing, being so open and educated about Lowell’s condition, you’re modeling it for him, and it will help him to deal with it better and better. Keep it up my darling daughter! Love, Mom.

  5. Cylin gonsalves

    Can you please contact me a very worried mother with son battling crohns since 7yrs old now 15 and its a mess?? Please help

  6. Lori

    Does anyone have experience with Tysabri injections for Crohn’s disease? My daughter has failed Remicade, Humira and now Cymzia and her new physician in Chicago wants her to try this medication. Can anyone comment? At present she is on steroid therapy and not doing well. She is a college student who was diagnosed 10 years ago. It has been a struggle.

  7. Lori

    Does anyone have experience with Tysabri injections for Crohn’s disease? My daughter has failed Remicade, Humira and now Cymzia and her new physician in Chicago wants her to try this medication. Can anyone comment? At present she is on steroid therapy and not doing well. She is a college student who was diagnosed 10 years ago. It has been a struggle.