Dealing with a chronic illness like ulcerative colitis is challenging for patients in various ways, and one of those ways is how patients parent. I am grateful that I have a wife and three children to lean on for support, but I’m also acutely aware of the ways my illness has affected my parenting.
When I was diagnosed with ulcerative colitis, my children were 10, 6, and 2. A couple of months after my diagnosis but before my condition was under control with a biologic, I was hospitalized twice. During that time, my wife was the primary parent as I was 90 miles away from home.
Although this was a stressful time for my family, the help we received from our extended family -- particularly my mother who brought me to the hospital so that my wife could stay home with our children -- made our lives easier.
Post-hospitalization, when I was struggling to control my condition at home, my parenting was still affected as the corticosteroid I was prescribed to decrease the inflammation in my colon made me moody and irritable. As such, I was more susceptible to feeling annoyed and frustrated by my children’s behavior, which is not a recipe for great parenting. It was disappointing not to be my best self.
Fortunately, after I responded positively to an intravenous biologic, I was able to taper off of that corticosteroid and began to feel more like my old self. However, being prescribed that biologic presented a new parenting difficulty: being gone for much of the day on treatment days. Once again, this meant my wife had to assume primary parenting responsibilities on those days.
Although I received that particular biologic only once every 8 weeks, for insurance reasons, it was easier to get the treatment at a hospital 90 miles away rather than the primary care facility in my hometown. While driving so far to receive treatment made things easier financially, it also required spending about 7 hours away from home. On treatment days, this meant my wife was responsible for transporting our kids to any after-school activities.
Post-treatment, I often didn’t have much of an appetite. Our family usually eats together every evening, but on treatment days I would often skip that meal or eat very little. When I was struggling to control my condition before I was diagnosed with ulcerative colitis, I would also frequently skip meals, eat very little, or eat something blander than the delicious meal my wife prepared.
Another way treatment affects my parenting is that I always have to be mindful of future treatment days when planning family activities and trips. Can we do that activity or take that trip then, or do I have a treatment?
Having ulcerative colitis has definitely increased the difficulty of parenting at times, but I’m fortunate to have a loving and understanding wife who takes on the role of primary parent when necessary. Working around my schedule can be annoying, but it’s a small price to pay for treatment that allows me to keep my colon.
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