At the young age of thirteen, I had already mastered the art of hospital waiting rooms when I arrived for my first ever gastric emptying scan. My mom and I offered general platitudes to the check-in nurse, but I thought the idea rather silly. What would eating radioactive eggs possibly reveal about my rapidly declining health? After I was forced to ride the waves of nausea, I never imagined I would be diagnosed with Gastroparesis. Gastro-what? I didn’t even know what Gastroparesis was!
Today, at 22 years of age, I gaze down at the central line in my chest and at the bag of stomach contents draining from the feeding tube in my abdomen. That 13-year-old girl couldn’t have suspected she would develop Chronic Intestinal Pseudo-Obstruction too. Both of which are forms of digestive tract paralysis.
Gastroparesis and chronic intestinal pseudo-obstruction are two distinct, yet similar conditions that warrant explaining. I have them both.
Gastroparesis (GP) is a motility disorder characterized by delayed gastric emptying. In layman’s terms, my stomach is paralyzed. It does not digest as it should, leaving food to sit there for prolonged periods, which creates other health problems like nausea, vomiting, reflux, early satiety, and more. Following my diagnosis, I tried medications to no avail. Later, I had a feeding tube placed to run a special formula directly into my small intestine to bypass my malfunctioning stomach. Without my tube, malnutrition overtook my emaciated frame. I was starving. The tube increased my quality of life immensely.
Similarly, Chronic Intestinal Pseudo-Obstruction (CIPO) is also a motility disorder but rather than affecting just the stomach, it affects the muscles and nerves of the greater digestive tract. Intestinal peristalsis is uncoordinated. The intestines do not contract properly, if at all. The unmoved food, air, and bile create the symptoms of a bowel obstruction. Although x-ray scans present with air-fluid levels, the typical mechanical obstruction such as a tumor, a hernia, or an adhesion cannot be found—hence the term “pseudo-obstruction.”
During severe pseudo-obstruction episodes, the intestines become so dilated they are prone to perforation. This condition has caused me not to tolerate the tube feedings I subsisted on in my earlier years, as formula accumulates with air and fluid in the bowel to form an obstruction. Consuming actual food is catastrophic, typically ending in a hospital admission. I occasionally try, but meager bites of purees and soft delicacies fuel the obstruction cycle. The complications have even sent me into medical shock.
So, I am currently receiving a type of intravenous nutrition known as total parenteral nutrition (TPN). Nightly, TPN is infused into my bloodstream through a central catheter leading to the main artery in my heart. Despite not using my gastrointestinal tract for nutrition, I depend on my feeding tube to continuously drain my stomach because my intestine cannot handle the burden of processing its natural secretions.
DIGESTIVE TRACT PARALYSIS
You’ve heard me talk about gastroparesis and chronic intestinal pseudo obstruction, but there is a third diagnosis that falls into the category of motility disorder: colonic inertia (CI). In short, CI means things do not move through the colon as they should. Rather than rattle off all that medical jargon, it’s easier to explain my conditions with a catch-all phrase – Digestive Tract Paralysis.
LIVING MY LIFE, REGARDLESS
No matter the state of my motility disorders at any given time, my greatest aspiration has always been to live my life to the fullest. Whether I am in the hospital or repressing the urge to dry heave on the bathroom floor at home, the world does not hit the pause button because I am sick. Attaining that balance between allowing my body the rest it demands, and juggling school and work responsibilities, is a skill I am still learning to perfect.
AN EVER-PRESENT FEAR
As I’ve aged, my challenges with digestive tract paralysis have evolved, but one aspect inevitably remains. Fear. My fears associated with digestive tract paralysis were menial in the beginning. I was worried my peers would judge me. Would others notice my weight loss, my pallid complexion, or my hair that was losing its shine? What if I threw up in the hallway at school? I literally sat in class planning my escape route, searching for the nearest exit as the chunks of my breakfast traveled upwards into my throat.
What began with the anxiety of vomiting in public morphed into a feeling of trepidation at the possibility of a feeding tube. When my tube was finally placed, in the midst of my defeat, I silently prayed I would not require TPN like others with these medical conditions. While TPN is lifesaving, the milky, white fluid pumping into my veins possesses equal power to kill. The organs are not equipped to process artificial nutrition long term. TPN introduces the risk of liver failure, kidney problems, blood clots, and sepsis (a deadly blood infection). It is not IF these complications will occur, but WHEN, and so now, my greatest nightmare, the fears that dictates my days, is my reality.
The chronically ill expect fear. I cannot begin to do justice to the ways in which digestive tract paralysis has impacted my very being. I’ve sacrificed healthy, exuberant vitality for a body augmented with tubes and seized by pain and fatigue. I’ve lost the ability to eat, along with the social connections shared by food. I cannot consume celebratory cake on my birthday or revel in the warmth of coffee shared by friends on a cool evening. However, an excess of fear surrounding digestive tract paralysis does not change the overall outcome. None of my worries about the future would have prevented my disease progression.
My best piece of advice to achieve a semblance of balance with digestive tract paralysis is this: Conquer that fear. I wish I’d learned that sooner. Do not live anticipating the next impending flare. I have little control over gastroparesis and chronic intestinal pseudo-obstruction, but I can choose which emotions dominate my life.
Relinquishing that fear, makes the good moments all the more precious. Nobody cannot truly live with the shadows of fear drowning out the light.
From the editor:
This is Cheyanne’s first article with Patients Rising. We’re sure it won’t be her last. But others have written about DTP diseases. You’ll find different perspectives in:
“Feeding Tube Troubles with the TSA” – by Carolanne Monteleone
“You Need to Get Power of Attorney” – by Jennie Lucio
Cheyanne is a 22-year old college student hoping to pursue a career as a counselor in chronic and terminal illness. She also runs a small Etsy business and writes about psychology and neuroscience for the company CogniFit. Her challenges with Ehlers Danlos Syndrome and its comorbid diagnoses (digestive tract paralysis, dysautonomia, and mast cell activation syndrome) have inspired her efforts for patient advocacy. She strives to prove that life with a chronic illness is still worth living through her blog and affiliated YouTube channel at hospitalprincess.com.