Posted by Steve Woolf on January 03, 2019
My name is Steve Woolf and I come from a family of five in Fairfax, Virginia, including a daughter in college and two 17-year-old twins, one of whom is Becky. Becky was diagnosed with Crohn’s disease at age seven, although we believe she was symptomatic before then.
Becky has had a difficult course with refractory disease: anti-inflammatory agents (Pentasa), steroids, and immunosupressants (6MP) were unable to produce remission. One of our only successes came through enteral therapy—for almost three years Becky had nightly NG feedings and was able to restore her weight—but her GI symptoms persisted. Biologic treatments with Remicade and Humira also failed, and the development of colonic and rectal strictures in 2017 required the placement of an ileostomy. This ileal diversion, supplemented by methotrexate and Stelara, has brought some relief for Becky.
As in every IBD family, the illness has changed our lives. We draw inspiration from Becky, who is an amazingly resilient child who has been very proactive in forging connections with other children with IBD. At first, she was alone with her disease, but later found support by attending Camp Oasis and, at age 14, being introduced to ImproveCareNow and the Patient Advisory Council (PAC). She was a bit young for the PAC at the beginning, but she quickly became deeply engaged, joining the PAC and later leading the recruitment task force and becoming an active participant at ICN conferences. She makes presentations at the conferences, and in between is active in leading conference calls and developing resources for children and families with IBD.
We are grateful not only for the excellent care Becky has received at our care center, Pediatric Specialists of Virginia, and at Children’s Hospital of Pennsylvania where we have had periodic consultations, but also for the connections, support and opportunities available to us through ImproveCareNow, the PAC and the Parent Working Group.
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