At the beginning of March, I had another appointment with my GI doctor, when I was told that I would need another NJ tube to maintain my weight and nutrition. I had lost over 15 pounds since I had removed my tube in February, taking my weight loss to nearly 50 pounds since my symptoms had first started in September. I needed to stop the weight loss and gain back a good nutritional status in order to be ready for the surgery that I would need to treat my MALS.
However, this time, the NJ placement didn’t go as smoothly as it had 2 months prior. I vomited under anesthesia, forcing the anesthesiologists to place a breathing tube to prevent me from choking on my vomit. No one could understand why I threw up, given that I had fasted as instructed before the procedure. Luckily, I only had chest pain and a bad cough from this complication. I spent a week after the placement in the hospital to monitor for refeeding, build up my feed rate, and for pain and nausea control, as these symptoms had reached an all time worst, especially the nausea. I only left the hospital to make it to my appointment with a MALS surgeon in Winston Salem, NC.
During this admission I started a program that helped to keep me motivated through my medical journey. It is a program called Beads of Courage. I would receive a different colored bead for each medical thing I had to endure. There were beads for just about everything I had to go through, such as surgeries, anesthesia, clinic visits, feeding tubes, infusions, needle pokes, and more. My strand was many feet long, only including beads I earned from September to March. It helped to have a visual representation of everything I was battling through.
I went into my appointment with the MALS surgeon full of nerves. I didn’t even know if he would accept my case and take me as a patient, or if he would be a good fit to be my surgeon. But as soon as I met him, I knew he was the perfect fit. He was the kindest and most gentle doctor I had ever met. He wanted to hear about the foods I missed the most, and he truly seemed to understand my level of pain. After discussing my symptoms and going over my condition, he scheduled one more test and scheduled surgery for March 25th, only ten days after the appointment. I immediately broke down in tears. I was so happy to have a chance for “Life 2.0” so soon. I was warned by my surgeon that the surgery is not always successful, but I chose to think I would be in the percentage of people that get better.
Before my mom and I could drive home to Charlotte, I had to complete the test that the surgeon ordered. It was called an Upper GI series. I had to drink a cup of barium and have images taken in different positions. This test was for a condition called Superior Mesenteric Artery Syndrome; a disease caused by extreme weight loss. In this condition, there is a blockage in part of the small intestine called the duodenum. If I had this condition, the images would show that when standing, the barium would get stuck, and would only move through my intestines when I laid down and curled up on my left side.
The test made me very sick. Drinking the barium caused horrible pain and nausea as I moved into the various positions for the test. After the final images were taken, my mom was brought back in and the radiologist pulled up the images on a screen. He played them like a movie. My heart sunk as I watched the barium flow easily down my esophagus and through my stomach, but then suddenly stop as it hit my small intestine. This confirmed my diagnosis of Superior Mesenteric Artery Syndrome. I had suspected this diagnosis for months, but I felt so defeated to have the official diagnosis. SMAS would now also need to be addressed in my upcoming surgery, and explained why I had vomited with my NJ tube placement.
Waiting for the next 10 days felt impossible. My symptoms and NJ tube made me miserable, and I couldn’t wait to get the surgery to fix my symptoms and replace my NJ tube with a surgical feeding tube. The surgery would have 3 parts. First was the MALS ligament release. In this part of the surgery, my surgeon would trim the ligament that was compressing my celiac artery and remove the damaged nerves that were causing my pain. Next was the Ladd’s procedure for my SMAS. A Ladd’s procedure is when the small intestine is moved out from under the superior mesenteric artery, where it is being compressed, and moved to the side. My large intestine would also be relocated to make room. Lastly, I would get a type of feeding tube called a GJ tube placed. This tube goes directly into the stomach and small intestine from the outside of the abdomen. The G port could be used to drain bile out of my stomach and the J port would be used to feed me directly into my small intestine as I recovered from surgery.
Finally, it was surgery day. I was a mix of excited and nervous. Excited to beat MALS and SMAS and scared for the post-op pain and possibility of the surgery not working. The surgery took seven hours but went as planned. I spent the next week in the hospital. I enjoyed watching March Madness games and slowly reintroducing foods. I was only allowed gummy bears and liquids for the first three days, but it was amazing to eat and drink without any pain for the first time in months. When I was finally allowed solid food, I could only eat a few bites at a time without getting full, but the ability to eat was the best feeling in the world.
While eating again was amazing, the surgery recovery was hard and painful. I had a five-inch incision between my sternum and belly button and a newly placed feeding tube, which made moving even my legs extremely painful. Getting out of bed for the first time three days after surgery was the most excruciating thing I had ever done, even with the help of my mom and nurse, but I did it. Over the next week, I slowly worked on my physical therapy every day. I worked on sitting up in a chair for a few hours each day, then walking down the hall, and finally walking up and down a small stairwell. I even got to enjoy a visit from my favorite nurses from the hospital in Charlotte. Surgery recovery was a challenge each day, but I was able to eat again and moving towards getting home as I overcame every obstacle.
Kate's Courage 