I was about 7 or 8 years old when my medical story started. I had been healthy up until 3rd grade when I started having chronic abdominal pain. I remember often having stomach aches while at school and I would notify my teacher of my pain. I’m unable to recall if I had stomach aches at home as well or not. My parents became aware of my reported stomach aches and sought help from my pediatrician. However, my parents and I were turned away. I don’t remember this doctor visit but when I was older, my parents told me that the pediatrician had told my parents that there was nothing wrong with me and that I was “just a whiny child”. Because of this, my parents were refused the insurance required referral to a gastroenterologist (GI) specialist for further evaluation of my abdominal pain.
This maybe wouldn’t have turned out to be such a huge problem for some children and their parents. My mother has a rare, genetic disease called Familial Adenomatous Polyposis (FAP). There is a 50/50 chance of inheriting it from a parent with the disease and it’s not a disease to ignore. FAP causes 100s to 1000s of precancerous polyps to develop in the colon, requiring surgery to remove the colon before the polyps become cancerous. Additionally, there is an elevated risk for these polyps to cause cancer anywhere else in the GI tract and for other cancers outside of the GI tract to develop. There are many extracolonic manifestations of FAP that also affect health. Regular monitoring is required to not only survive FAP but also to maintain a quality of life. My parents did not know if I had inherited FAP from my mother, but they knew there was a chance and they knew that my chronic abdominal pain could be something serious because of this. Three months after my birth, my mother was diagnosed with colorectal cancer as a result of her FAP. She required surgery to remove her colon and rectum and have a permanent ostomy placed. I grew up not realizing my mother had a chronic illness, I just knew she had an ostomy that required changing every few days. As I grew older, I assisted my mother with changing her ostomy appliance.
My parents originally had an HMO insurance plan that required a referral from a primary care doctor in order to see a specialist. Upon having the first opportunity to change insurance plans, my parents changed from an HMO to a PPO plan that did not require a referral to see a specialist. This allowed my parents to schedule an appointment with a pediatric GI specialist without delay. Fortunately, my new GI specialist took me and my parents seriously. She gathered a thorough family history and upon learning about my family history of FAP, she quickly scheduled an endoscopy and colonoscopy for me. I don’t recall understanding what was happening during all of these doctor visits and medical testing. I believe my parents told me that I needed to be checked for my mother’s disease of FAP but that was too abstract of a concept for me to fully grasp at the time. After all, I didn’t view my mother as chronically ill. The scopes found that at the age of 8, I was already developing colon polyps and my stomach was pre-ulcerous from stress. A genetic test was completed and I was confirmed to have FAP. The colon polyps were biopsied and one doctor determined the polyps were already starting to turn cancerous while another determined the polyps had not turned cancerous yet but would in a matter of time.
For caution’s sake, my parents elected to proceed with having my colon removed to eliminate the risk of colon cancer. This surgery resulted in an ileostomy with the intention to reverse the ostomy into a Jpouch. Prior to the surgery, I forgot I was not allowed food or drink in preparation of the surgery and ate a snack. As soon as I remembered I was not supposed to eat or drink, I notified my mother of my snacking. She contacted my GI specialist who had a home health nurse come to our home in order to insert a NG tube into my nose and down to my stomach to administer medication to flush my digestive system of the food. Unfortunately, the nurse was unable to insert the NG tube resulting in countless, painful attempts at insertion. This experience was the beginning of my medical trauma. To this day, I am terrified of NG tubes.
I had my surgery at the local Children’s Hospital where I had one surgeon assigned to my case and he had three residents assisting him in my surgery and follow-up care. My parents later told me that my surgeon and two of his residents did not listen to their concerns about my health. This would turn out to cause me immense harm.
After my initial surgery, I experienced complications resulting in several more surgeries that were severely traumatizing to my young psyche. Soon after my first surgery, my incision became infected, resulting in an ER visit at the local Children’s Hospital where I had my initial surgery. I vividly remember this visit as my incision required surgical reopening for my incision to be cleaned and packed. I remember a needle being aimed at my thigh and I screamed for the ER staff to stop. I was advised that I could receive a morphine shot in my thigh or in my buttocks but it would hurt less in my thigh. Although I allowed the morphine shot to be administered, it was not effective. The ER staff surgically reopened my incision without any anesthesia or effective pain management. It was the worst pain I have ever experienced in my life. I remember my mother telling me that I was scaring the other children in the ER with my screaming from the scalpel.
Within a week from this ER visit, my pain worsened and my parents took me back to the ER. I was in excruciating pain and terrified of what the ER staff would do to me during this visit. The ER doctor assigned to my case at this visit completed an X-ray and found nothing remarkable so he released me from the hospital. He told my parents that there was nothing wrong with me and I was “just a whiny child” and to take me home. The next morning the pain had not improved so my parents once again took me back to the ER. Fortunately, a different ER doctor was assigned to my case this time and completed more thorough testing. It was determined that my small intestine had wrapped around itself and my surrounding organs. Emergency surgery revealed that part of my small intestine had died due to the twisting, along with killing my Jpouch that was necessary for ostomy reversal. The hospital doctors couldn’t believe I had survived the night. I would require two more surgeries during that year in an effort to prepare for a possible future ostomy reversal. My pediatric surgeon would refuse to complete the ostomy reversal though and I was left with an ostomy.
My GI specialist was a strong advocate for me and my well-being. Due to the issues I experienced at the Children’s Hospital, she encouraged my parents to notify her immediately of any health issues I experienced. She kept me as a patient for over 20 years and even provided me with her personal number in case of emergencies. After having five surgeries within one year, my parents and GI specialist changed my care to another hospital system. I was no longer under the care of doctors who were dismissive towards me and my parents. I can only surmise that the previous doctors thought I was exaggerating my symptoms for advantageous reasons as children do at times and that my parents were overprotective of their young daughter.
Six years later, at this new hospital system, I underwent two more surgeries to finally reverse my ostomy and remove adhesions. I was elated to have a new surgeon who not only was willing to reverse my ostomy but who also listened to me and my fears. He was very supportive and understanding of the trauma I had experienced at the Children’s Hospital. My new surgeon and GI specialist took extra steps to help calm my fears such as arranging medical tests and surgeries with one anesthesiologist in particular so that I had full trust in all of my providers involved with any procedures or surgeries.
The onslaught of repeated hospitalizations and surgeries I endured completely traumatized me resulting in medical PTSD. I was unable to cope with what I had been subjected to nor was I able to adjust to life with an ostomy. It took several years of counseling and medication management in order for me to overcome the worst parts of my depression and PTSD. To this day, I continue to experience triggers of PTSD and bouts of depression. However, I am more greatly equipped now to cope with these instances when they occur now.
If my parents had listened to my pediatrician or the ER doctor, I wouldn’t be alive today. I thoroughly believe that if I had not been a child, particularly a female child, my cries of pain would have been taken seriously by my medical staff and I would not have been subjected to the medical trauma I experienced.
Story By Jenny Jones of Life’s a Polyp,