Why IBDLyfe Means So Much to Me
My story begins in 2011, when my then 13-year-old son first entered the children’s hospital for complications from ulcerative colitis. I felt helpless and powerless – a sensation that no parent comfortably bears. By the time my son’s intestinal health was on the path to recovery, eight months had passed, and a lifetime of irreversible consequences had been set in place. If a platform like IBDLyfe had existed, I believe some of my family’s circumstances would have come out differently. But my mantra has always been that timing is everything in life, and so here I am to tell you about my motivation for joining Lyfebulb on this journey.
My son had been diagnosed with UC at age 9, after several years of digestive issues, but his situation did not reach a life-threatening state until that December of 2011. At that time, he had been on corticosteroids for almost a year and wore the typical “moon” face and puffy weight gain of someone taking long-term steroidal medication. His recent onset of puberty growth had also been stunted. That December of 2011 would be the start of a decline that would lead him back into the hospital in April of 2012 for his colectomy and J-pouch reconstructive surgery (after becoming refractive to corticosteroids for 18 months), followed by his reversal surgery in July, which resulted in complications that led to a third surgery days later. In total, he spent 81 days in the hospital from December 2011 to July 2012.
During the time that I lived in the children’s hospital, so much of my life was put on hold. Of course, I could not leave my job at the college where I taught, nor could I stop raising my younger child, who was 11 years old at the time. But in my heart, I had abandoned the quality of my work outside that hospital. And other people suffered.
As the parent, one of my obligations was keeping family and friends informed of my son’s status. The only source I found at that time was a website whose name I will not mention here but which served then as a great source of sharing information and maintaining communication on an intimate scale with those who needed to know. However, what that site could not provide me were the resources I desperately craved:
I wanted to know what others in my parenting situation were doing or had done. I wanted to talk with those who understood what I was experiencing and feeling without being pitied. I wanted to know about predicted scientific outcomes for the surgery my son was undertaking. I wanted to journal about my experience in one organized place, to create a history of what was happening, lest my memory fail me when I needed to retrieve details for future medical visits with my son. I wanted parental advice on how to productively manage my professional and family life beyond the hospital. I wanted someone in the know to reassure me that my family and I would get through this intact, not just physically but also mentally. I wanted a community to call my own as the parent who was suffering in a different way from my son but suffering, nonetheless.
Here I am nine years later in 2021. My son lives a mostly healthy life with his J-pouch still appearing to do its job, but there are issues. Since he is 23 years old, I have had to step back and let him tackle those issues independently. Still, he reaches out to me as a caregiver and partner on this life journey of his, and still, I am often stumped as to what to say or recommend. Now I am the IBD Community Manager at Lyfebulb, and I am excited and finally optimistic, not only for my son’s potential access to information and resources but also for my own. I could not prevent the personal casualties of 2012, but now there is IBDLyfe. Hopefully I can help current and future caregivers along their IBD journey, encouraging their contribution to this community that has so much to offer … before it is too late. And that can only be better for the patients we love so dearly. I will conclude by repeating my mantra: Timing Is Everything in Life. And the time is now.