Another Friday, another Champion Patient. This week, we introduce Courtney Faber and her story of life with gastroparesis.
When I was just hardly a year old, I had a swollen finger and painful wrist. Nothing too severe, but never in a million years did my parents think that swelling would lead to needing an intestinal transplant. I wish I had a “cooler” story, but the truth is, gastroparesis is not cool. Gastroparesis is a painful, debilitating disease often leaving those malnourished and underweight. The summer I was diagnosed was supposed to be filled with barbecues and memories. Instead, it was filled with tears and hospitalizations.
It was late spring. The weather had finally made a turn for the better. The days were growing warmer and longer, a welcomed change from the brutal winter. Barbecues were every weekend and pool filled days made up the weeks in-between. I eagerly anticipated the memories I was going to make that summer now that school had officially let off. I didn’t expect those memories to be filled with he pain, tears, worries, and hospitalizations that come with gastroparesis, but you never know the day your life is about to change until you are looking back on it. A summer that was suppose to be filled with cookouts and cheeseburgers wasn’t suppose to lead to myself being lucky to choke down a few sips of water, yet it did. Gastroparesis was a diagnosis I and my family had never heard of until it made way into my body and that’s why it needs more awareness- although a rare disease, we are not too few to save. August is Gastroparesis awareness month and I am here to share my story.
Gastroparesis can be a primary disease itself, or a secondary disease to another disease. For me, it is a secondary disease to Chronic Intestinal Pseudo-Obstruction disorder, (CIPO). With CIPO, your body believes it has a mechanical obstruction in the absence of one. Gastroparesis is paralysis of the stomach and CIPO is paralysis of the intestines, an extension of gastroparesis. In severe cases, patients like myself, must receive their nutrition and fluids through a large vein in their body, called Total Parenteral Nutrition (TPN). Once a patient is TPN dependent and cannot take in calories orally, they are left needing an intestinal transplant and removal of 90% of their stomach in order to restore function. While most causes of CIPO and gastroparesis are unknown, rarely, they can be the result of collagen vascular disorders, including Rheumatoid Arthritis. That swollen finger and painful wrist I had when I was one year old turned out to be the beginning of a life long battle with Rheumatoid Arthritis and its comorbidities.
My days are filled with joint and debilitating abdominal pain, as well as nausea, bloating, and unwavering fatigue. So how do I get through the days? I choose to see the good in every moment of each day. Yes, I wish I did not have gastroparesis. Yes, I wish I could eat, drink, and enjoying going out. Yes there are a lot of things I wish I could do or change, but in the moment I still have so much to be grateful for. Surviving a disease so rare some doctors don’t even know about “takes guts.” No amount of pain, nausea, or vomiting can take away the love and support my amazing family blesses me with. I have resources that allow me to be a survivor, such as amazing doctors and a strong medical community within hours of my home and a phone call away. I created the “I Had a Good Day Project” to remind myself each and every day that I am blessed and stronger than I know. My faith helps keep me going and I am blessed to have found an amazing support group. Gastroparesis does not have to be a death sentence, it needs awareness and one day I hope for a cure, but with the right mindset, we can get through it together.
My name is Courtney Faber, but I write under the name Courtney Nicoline James, in honor of both my parents. I was always the girl in school who sat in the front row and got excited any time an essay was assigned! I guess you can say writing has always been a passion of mine. I’m from the great state of New York even though I am a beach girl by heart. Besides writing, I love any and all music as well and play three instruments- viola, guitar, and piano. I cannot sing but that doesn’t stop me from holding private concerts in my car while driving! I am also a registered EMT and love helping others. I have a wonderful family and am one minute older than my identical twin sister, who, despite my illnesses, is thankfully healthy! I started the “I Had a Good Day Project” to help me find the good in every moment of every day. I am blessed and have a great team of doctors and support from my community that no illness can take away from. Even in my worst moment health wise, it is still a good moment and day for those reasons. I believe if we start realizing the good in every moment, we will start seeing more and more good fill those moments. This helps me stay positive and in good spirits day in and day out and I hope, through my writing, to help others find the good in their moments as well. I am thankful for the life I have and those in my life, and I am thankful for this opportunity to share my writing.
Do you know of a DTP Champion? Or do you feel you are? Nominate someone, or yourself for a future patient spotlight. Head over to our Awareness Month Website and go to the Coaches Corner.