Digestive Tract Paralysis Awareness Month
August is Digestive Tract Paralysis Awareness Month, a month close to my heart because I live with a condition that greatly slows down my gastrointestinal motility. I have Gastroparesis, a disease that causes the stomach to empty very slowly (if it even empties at all) into the intestines. Because of this disease, my stomach no longer empties and I have very little motility in my intestines, leaving me constantly symptomatic and unable to meet nutritional requirements. To this day, gastroparesis has been one of the conditions that disrupts my daily life the most.
It is estimated that 1.5 million Americans suffer from gastroparesis, with the most common symptoms being nausea, vomiting, and abdominal pain. Although there is not one single cause to gastroparesis, it is caused when the muscles or nerves throughout your GI tract aren’t working properly. That means Gastroparesis is common in diseases that have significant nerve and muscle involvement such as Diabetes, MS, Parkinson’s Disease, etc.
I live with a genetic disease called Mitochondrial Disease, a progressive disease that affects every cell in the body with the exception of immature red blood cells. Because I have Mitochondrial Disease, every single muscle in my body is weak, including my major organ systems. Food emptying out of the stomach and moving through the intestines takes a lot of strength and energy, and unfortunately, my body just doesn’t have it. This is the reason I have Gastroparesis.
I have had minor GI issues my whole life that were easily handled by my pediatrician, but it wasn’t until I was 14 years old that they became more severe. By the time I was age 15, my symptoms were full blown, and ever since, my health has continued to spiral. In high school, I was officially diagnosed with gastroparesis after a gastric emptying test showed my emptying was extremely delayed. At that point in my life, I was really sick so getting a correct diagnosis was a really big deal to me. I had been spending the majority of my time curled up in bed with severe pain and uncontrollable nausea. I was frequently admitted to the hospital for vomiting 20+ times a day for weeks at a time or because I would go 10+ days without a bowel movement. That was my normal life and although I already had a plethora of GI diagnoses, was prescribed many medications, and had GI surgical history, receiving a Gastroparesis diagnosis still made a big difference.
Throughout these 10 years that I’ve had a Gastroparesis diagnosis, I have been thrown a lot of curve balls. I have seen many different doctors and tried countless different treatment options, but only had good luck with a few. Many of the medications I initially responded well to stopped working and I started to struggle with getting enough nutrition to sustain proper organ function. Last year, my doctors made the decision that I needed to start receiving nutrition in alternative ways. I was initially put on TPN which was a good option for six months, but unfortunately, I got sepsis and can no longer go that route. In January, I had a j-tube surgically placed and have been receiving tube feeds that go directly into my intestines for 8 months now.
J-tube feeds have not been easy due to the fact that I have very little motility in my intestines. Since the formula moves through my intestines so slowly, I am not able to fit the entire volume of my prescribed formula, leaving me receiving a total of only 825 calories a day.
Although I do not know what the future holds, I do know that this isn’t a problem that will just go away. It’s hard not to become consumed by all the doom and gloom of this disease and worry about the future, but I’m doing my best. Today, I am trying not to focus on all the pain and suffering Gastroparesis has caused me, but focus on the good things instead. I am feeling thankful for all the doctors, medications, and forms of nutrition that have not only kept me alive, but continue to keep me alive every day. So, for now, I am just trying to roll with the punches and stay hopeful that better treatment options will become available.