Life is a crazy thing. It is so beautiful, magical, precious… It is so painful, numbing, and crushing. It tears apart every piece of you, yet creates a spectacular masterpiece of who you really are. This Monday at CHOW I had more brush strokes added to my masterpiece. I had my appointment with Dr. Kovacic, the GI motility specialist, that day. The night before that appointment was full of anxiety for my parents and I. I had no idea what to expect… Would I get my answer I have been desperately searching for, or be left with nothing? Turns out I was given my answer and more.
I was diagnosed with pseudo obstruction motility disorder. I have pseudo obstruction disorder. I have been saying that previous sentence over and over. Pseudo obstruction disorder is on the worst end of the spectrum. It is a progressive gastrointestinal, and sometimes urological disease, that has no cure. It attacks every inch of your digestive system, and continues to ravage your body even after it takes one organ. For me, it has taken my stomach and intestines away. Those are things that I miss every day.
This disorder has left me dependent on a line that feeds me through my heart. That is from this disease. However, I refuse to let my body continue to be crushed. I am not okay with that. I have a much longer time here being healthy and alive. I have big plans for life. I am not going to let this disorder end it for me. Dr. Kovacic acknowledged just how incredibly sick I am. She said that I need surgical intervention, like yesterday need it.
There is a multitude of options to pursue… It is an overwhelming thought. I have an appointment with a pediatric surgeon this July, but they are working to move up that date. There are many ideas being thrown around… A G tube, a J tube, a GJ tube, a gastric pacemaker, a sacral nerve simulator, an ileostomy… It made me realize the severity of what I am dealing with.
I will do whatever it takes to try and relieve my symptoms and possibly slow the progression of this disorder. My team at CHOW will have a meeting and then present us with the options we have, along with the pros and cons. I am fearful for what comes in the future. I am also hopeful. I am so grateful to have been finally given a name to what has infested my life. I am thankful to have a name for the disorder that has changed my family and friends. I am so thankful that I have an amazing team of doctors who are so eager and hungry to help me. I am thankful that I now know what I am up against. And now, it knows what it is dealing with, friends, family, a whole community, a medical palooza and I.