November started off with a trip to the emergency room. My pain had reached a new level of severity. It was more than I could handle. I received pain medicine to control my extreme discomfort and a few tests to make sure that the spike in pain was not a post-surgical complication from my exploratory surgery. Once we were sure that there was no immediate danger, I was sent home with pain medication and instructions to contact my doctors the next day.
Once we talked to my GI doctor, he wanted more tests run as soon as possible. I went in that day for more bloodwork and an ultrasound of my bile ducts. At this point, a blockage or dilation of my bile ducts or pancreatic ducts was our best guess as to what was happening. While the bloodwork was normal, there was slight dilation of my bile duct. We contacted a specialist of bile duct diseases and made an appointment.
I waited eagerly for the next two weeks for the appointment. We all thought he was my best chance of getting better. However, in the appointment, he quickly dismissed my pain and said that there was no way he would do further testing and procedures. He said that all teenage girls get stressed out and get stomachaches. I was heartbroken. Once again, I had been dismissed and told to live with the pain.
But my GI doctor would not give up. He scheduled an endoscopy for November 23 to get a look at my digestive system for himself. The endoscopy revealed multiple ulcers and an infection in my esophagus. These were both a result of eating so little. My stomach acid was burning holes in the lining from a lack of food and the infection was from swallowing so infrequently. While these findings made it clear that I was eating nowhere near enough food, they couldn’t explain my severe symptoms.
The last test that my doctor could think of was called an endoscopic ultrasound, or an EUS. This is where a doctor uses an ultrasound inside of the small intestine to get a better view of the bile ducts and pancreas. This was the last chance to figure out what was going on, and just as I feared, it was normal. By this point, we had done bloodwork, two CT scans, multiple ultrasounds, two endoscopies, and an exploratory surgery. We were out of diagnoses that my GI doctor could think to check for.
We decided that we needed to start to focus on treating my symptoms. I started pain medicine to help with the now constant stabbing pain, medication to prevent more ulcers, and IV saline infusions twice a week to help with hydration.
During November, I also had to deal with Thanksgiving. A day dedicated to eating, something I could no longer do. I wasn’t in the mood to want to celebrate with my family either. But I still sat down with a tiny plate of food and had a few bites while sitting at the table with my family, in order to be a part of a holiday that the rest of my family loved. This was just the start of a difficult holiday season.
Kate's Courage 