Where it All Began
My son is 2 years old and he is having a colonoscopy, the first of many on the 7th floor at Cedars-Sinai Medical center in the GI Suite.
He had been having loose stools since he was around 18 months old and when blood showed up, our pediatrician said he needed to see a specialist thus necessitating this test. Looking back, I had no idea how this would affect our family, what my son’s diagnosis and prognosis would be, and the wide reaching impact this would have on our family of 4. I didn’t know that this day would be the beginning of almost everything about our family-from the food we eat, the vacations we go on, the other people we hang out with, family celebrations, all of our interpersonal dynamics, and everyone’s psychological well being.
The hospital attire for babies and kids, at least back in 2002 was a two-piece tie in the back shirt with elastic waist pants. In his bed with the pull around curtain for privacy, I changed him. I listened to the beeps from the other patients nearby, their vitals being monitored and couldn’t believe this is where I was with my baby. We waited for the nurse to get all the pertinent information, allergies, medications, weight, and his vital signs. The list of medications-there were none that day — has grown at each of the countless times since then that he has been back in the GI suite for procedures and surgeries. “Any allergies?” The nurse asked. There were many, as we had already been down the path to figuring out what may be causing his digestive and other allergic issues and so even at age 2, he was already avoiding quite a long list of foods.
For years, we have been listing medications he is on, and food and medications he is allergic to at every procedure, doctor’s appointment, and hospital stay. The lists have changed, more meds, less meds, some allergies he grew out of and in case you have not had experience with procedures, surgeries, hospital stays and frequent doctors visits, you might be asked these questions by different providers within the same visit.
I am in the middle of listing all the newly removed foods from his diet, eggs, nuts, dairy, sesame, mustard, etc, when the anesthesiologist comes over to introduce himself to us. “I will be sedating him, he won’t be uncomfortable at all, and I will be monitoring him the whole time.” It is someone my husband knows, a friend of one of his high school friends. Somehow this is reassuring, I don’t know why because I know nothing of his experience and competence but this connection puts me slightly at ease.
I was scared mostly of the prep the day before when he was not allowed to eat anything. I went to the beach with a friend who had a daughter the same age as my son. I didn’t bring snacks because he was to only have clear liquids. Somehow we got through that day, I ignored his hunger signals and he went to sleep early. The next day, waiting for him to be finished, worrying about anesthesia and what they would find, I was so relieved the day of depriving him of food was over.
This first GI who did this colonoscopy, comes out and says “he has ulcerative colitis and we will start him on sulfasalazine and hopefully this will treat it.” Back home, I make him his favorite foods, chicken nuggets and smashed avocado with chips. Friends and family bring him gifts for having gone through this medical procedure. I don’t think I took in that this was a chronic, lifelong illness. I was relieved that at least for now, the 2 days of going through this, and the anticipation of the procedure, were over.
We quickly switched doctors as after the first medication didn’t seem to work. The doctor wanted to put him on steroids, even though he had scared me by saying “Even one dose of steroids can have damaging effects” There was buzz about a new GI doctor at Cedars who was trying to avoid putting patients on steroids. We soon made an appt with her and switched to her care. Little did I know at that time that this relationship with her has turned out to be on of the most important in our lives. When he was 5 years old and had his next colonoscopy with her, his diagnosis was changed to Crohn’s disease. He avoided having steroids until he was over age 10.
My son’s years have been filled with so much more than I even would have imagined on that day of first procedure. Of course no one can ever really know what lies ahead but I know for sure I did not think about any of the ways that the doctor emerging from just having done a colonoscopy on my 2 year old with implements that were designed for adults, telling us he had an inflammatory Bowel Disease would have the most profound effect on all of our lives.
