A Journey to Sustain Remission

My son was diagnosed with ulcerative colitis in 2014, at the age of 13. Fast forward to 2018, and I am thrilled that he is in remission and a thriving 11th grader juggling AP classes, SATs, extra-curricular activities, college tours, and yes, medication adherence. However, I’m also here to tell you, it has been a journey to achieve and sustain remission. Like so many of you, my mind raced with a litany of questions for days, weeks, and months after his diagnosis…IBD? Ulcerative colitis? What? No cure? How did my son get this? Next, guilt set in and then more questions…Why had I not heard about IBD before his diagnosis? Is this genetic? Was it the foods I prepared? Could I have prevented it? I was so distraught. I could not fix this, not this time.

Soon enough, my foci became: 1) How could I help my son find a new normal with UC? 2) If there is no cure for UC, how can we achieve remission? After months of testing and different treatments, his physician prescribed a medication that worked; a medication that improved my son’s quality of life and outcome with IBD. After a year, my son had achieved remission…WE DID IT! In my mind’s eye, remission would be sustainable if my son: kept all his appointments, took his medication as prescribed, ate right, and managed stress well between school & extra-curricular activities. Naiveté allowed me to think, “We got this!” Until I began to discover that achieving remission is one thing and sustaining remission is another, especially with a teenager.

I have learned that remission at 13, looks different at 14, 15 and 16. I’m bracing myself now for 17 and the college years! At 13, my son did not have a complete understanding of IBD and his UC diagnosis. His only concerns were getting back to school, not being perceived as sick, and not being treated differently. During his care center visits, he detested hearing the word disease in reference to IBD. So, we replaced it with the word condition. Through regular discussions at our care center and at home, and with positive encouragement, he took his medication regularly with little supervision. How do I know? I was a serial pill counter, but of course! At 14, high school…a brave new world!!! New school, new friends, new outlets. Medication adherence was quickly trumped by new social priorities and selective memory. We struggled, but I kept the lines of communication open with him about the realities of UC if he didn’t take his medication, and I relied on the advice and support of our care center and the PWG. At 15, his social circle grew and so did the activities…movies, parties, girls (that’s another article and a glass of wine 😉). During this year, chores did not stand a chance, so meds surely didn’t! Daily reminders were frustrating for both him and me, yet necessary. I can still hear myself saying, “take out the trash & take your meds!” At 16, need I say social media is king? Where do meds fit into the hustle & bustle of pre-college activities, internships, Facebook & Instagram? 

While my son has been able to sustain remission, I do not take it for granted, not for one minute. I strive to ensure that he does not either. Now that he's older and much busier, we have changed his schedule, so he can take his medications in the morning with his vitamins.  Also, he is learning how to refill his prescriptions to promote independence…college is only a year away. A true “aha” moment for me was understanding that as teenagers get older, they change, their world changes, and the mindset to sustain remission may need to change. Along the way, I’ve had to adjust my approach, patience, and maternal urge to enable, to make way for his personal discovery and self-sufficiency in managing his UC.

While treatment, care and personal steps to achieve and sustain remission may look different for each pediatric IBD patient and their family, achieving and sustaining remission is a goal we all share. It feels good that getting more kids into remission, and keeping them there, is at the heart of ICN’s mission. It means we're always working on it...together. I am forever grateful to Dr. Gitit Tomer & staff at the Children’s Hospital at Montefiore ICN Center and the ICN community for its support, guidance, care and collaboration along this journey – to remission and beyond!

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