The Devil Wears A Lab Coat

*Before you read any further, I would like to say a few things. This time of my life, January to February of 2012, was the darkest time of my life. Writing this post was very difficult; I had to re-face the pain and hardships that I tried so hard to put behind me. It is all part of my story, though. Please keep in mind that I did not speak to anybody about what you are going to read, and I would like to keep it that way. I don't want to re-live the experiences that I talk about in this post because they are too painful and have a very negative affect on me.*

I was as ready as I would ever be on January 23, 2012. I was armed with Harry Potter and the Deathly Hallows, my iPod, and the teddy bear that my grandparents sent me. Iowa City is two hours away from Des Moines. My mom and I did school in the car, and I listened to comforting Christian music for the rest of the trip. Since my brother went to the University of Iowa, I had been to Iowa City several times. Usually trips to Iowa City were very fun and enjoyable; this trip was different. My dad found a parking spot in a ramp, and we ate sandwiches that my mom packed before going into the hospital. The hospital was huge! A man in a suit was waiting in the main lobby to help direct patients. The man instructed us on how to get to Pediatric Specialty. Once I was checked in, there was a lot of paperwork to fill out. I was expecting to have to wait forever, but less than five minutes later my name was called. The nurse said that they were running ahead of schedule due to cancellations from the weather. After taking my vitals, the nurse led us on an unending path to a cramped exam room. After plugging in all of my medicines (I was still on antibiotics for Lyme's disease and steroids from the inflammation in my nose) and going over my symptoms, the nurse told us that the doctor would be in shortly. We probably waited for 20 minutes, but it seemed like hours. I could not stop the bad gut feeling that I had. I wanted to run as far away as possible from the hospital, but I engrossed myself in my Harry Potter book. There was a knock on the door, and a small man wearing a lab coat came in. He commented that Harry Potter was a good reading choice and then introduced himself. My mom presented him with a huge packet of notes, timelines, and even a menu of what I ate. The doctor reviewed all of the medicines I was on and what I was currently struggling with. I did my best to explain that I had constant nausea that was worse after I ate, unexplained weight loss, and lack of appetite. The doctor was very keen on discussing the weight loss. Yes, I had lost 37 pounds, but I never felt hungry and most foods didn't look appealing. He asked if I was drinking Boost or Ensure, which I wasn't. Instead I was drinking a more natural, and better tasting, drink called Orgain. My mom said that we bought it at the Vitamin Shoppe in Des Moines.
"Hmmm...vitamins don't have calories." The doctor stated while doodling on his note pad.
"No, we buy it at the Vitamin Shop." I corrected, rather snippy.
The doctor then started criticizing and disagreeing with everything my doctors in Des Moines were doing. According to Dr. Know-It-All, there was no way Prednisone would bring my sense of smell back. Antibiotics wouldn't help Lyme's disease (in fact, the aches and weakness were much better), and none of the other medicines my two GI doctors in Des Moines tried were at the right dose. The doctor declared that there were no other medical problems; my nausea was due purely to the fact that I was not eating enough. He told me that I looked "emaciated". Eating more and gaining weight was the final piece of the puzzle. I had already tried one appetite stimulator, but this doctor knew of a very strong appetite stimulator that was often given to patients with cancer: megace. With this appetite stimulator, I would feel so hungry that I would not care about my remaining nausea. I would gain two pounds per week on this medicine. To make sure I was gaining weight, the doctor wanted me to have weekly weight checks at my pediatrician, Dr. S.,'s office, and he wanted my weekly weight faxed to him. When my mom asked what his plan was if eating more didn't decrease my nausea, the doctor said that he would prescribe amitriptyline, a medicine that my first GI doctor had tried. The doctor was very confident that eating more would make me feel 100% better. He then told me that I need to eat more fried food, cheese on everything, cream instead of milk on cereal, and a Big Mac with fries. Hold up....first of all, I could not tolerate fried foods because of the grease. The doctor completely blew that off. Second, how is somebody on a gluten-free diet supposed to eat a Big Mac?! The doctor admitted that was a bad example, but encouraged me to eat McDonald's French fries. My mom then explained that the fryer was cross-contaminated with gluten. No, according to the doctor, since the fries are fried at 400+ degrees there wouldn't be any cross-contamination with gluten. I suppressed an eye roll, and my mom and I exchanged wary looks. Did this doctor know anything? The doctor gave us his business card with his e-mail on it and encouraged me to e-mail him with any questions. A follow-up appointment was made for a date in March. I was so discouraged and disappointed with how the appointment went. I had already tried eating more, and it was SO difficult for me. I was hoping for a medicine or a very specific test that would show something treatable. I was disappointed with the doctor--he was allegedly the best one in the clinic. The doodling on the notes, criticizing of my Des Moines doctors, and the whole McDonald's argument was too much to handle. I just knew the appetite stimulator wouldn't work--I have a bad history of medicines not working. We met up with my brother for a little bit before heading home. I was very upset on the way home. While I didn't have my hopes up for anything miraculous coming from Iowa City, I was still crushed.
 I started the megace the very next morning, January 24. It was a liquid that I drank once in the morning, and it was disgusting! It wasn't going to kick in right away, but my mom decided that I should start eating more right away. I felt so full, bloated, and cramped. The portions on my plate seemed huge, and anything that could be covered in cheese was covered in cheese. Even though eating was painful, I remembered Dr. Di's words ("push past the nausea") and fought past the discomfort. The second day on megace was completely unexpected. I took the dose in the morning and then sat down to study for a biology test. About 10 minutes later, the weirdest feeling washed over me. It was like that feeling that we've all experienced: you're home alone when all of a sudden you could swear you hear footsteps in the empty house. At first that panic feeling sets in; you feel tense and your heart is pounding, and you don't even think to breathe. That's exactly how I felt, but I didn't have anything to panic about. I was studying for a biology test, and I remember actually being quite bored. My chest felt tight, and it was difficult to breathe. Of course, symptoms like these that come out of the blue caused me to panic. I rushed into the living room where my mom was, and she immediately knew something was wrong. I explained how I felt, and my mom was just as bewildered as I was. I was also very aware of my heartbeat; I could feel and hear it pulsing in my ears and throughout my whole body. Suddenly I felt so tired and exhausted that I laid down on the couch and fell asleep. While I was napping, my mom had done some research on megace. It turns out that difficulty breathing and tightness in chest are very rare side effects. When I woke up from my nap, I felt like I could breathe better but my chest felt even more tight. My mom called the doctor in Iowa City who told her that I was just "anxious" because the medicine would make me gain weight. Of course, that was a load of crap so my mom called to make an appointment with my pediatrician, Dr. S. It was just my luck that it was Wednesday, and Dr. S. doesn't work on Wednesdays. My mom's second pick is a nurse practitioner, Sham, who is part of the office that Dr. S. is in. Sham could see me that afternoon so I wasn't able to make it to drama practice. I took another nap that morning because I was so tired.
 Sham wasn't sure what was going on, but she ordered blood work, a chest x-ray, and a scan of my lungs. She wanted me to come back first thing the next morning to see Dr. S. Due to the seriousness of my symptoms, Sham wanted a doctor's opinion. She brought in a doctor, Dr. El., who made the whole visit very enjoyable.
"Hey beautiful! How are you feeling?" Dr. El. asked as he burst into the exam room. Dr. El. has a very thick accent, and he is very nice. He asked if I had been feeling anxious or nervous when the symptoms started. I told him that I wasn't feeling anxious; I was just trying to do school. After the appointment, Sham made me go across the street to the main hospital for the lung scan. On the way out from the office, Dr. El. stopped me:
"Hey beautiful...you call me if you don't feel better, okay, Princess?!"
In the future, Dr. El. will prove to be another incredible doctor who has taken excellent care of me.
The lung scan was no big deal; I didn't like breathing into an oxygen mask for a few minutes though. The techs were so sweet and helped distract me by keeping the conversation going. The scan came back normal so I cleared to go home after being at the hospital from 2:15-5:00. I had a hard time falling asleep that night. Sham said if my symptoms got worse, I should go to the ER. My mom slept with me that night, and I woke myself up every hour worrying about my symptoms. The tightness in my chest was eased a little bit by pressing a pillow against my chest. One of the times when I woke up, I had lost the pillow in my bed. Oliver, my cat, was snuggled between my mom and me on my bed. While purring, Oliver climbed on top of me and laid down on my chest right where I needed relief! And some people say cats aren't smart....
 I was back at the hospital the next morning to see Dr. S. I felt the same; no better, no worse. When I walked into the office, Nurse. T. rushed up to me with a very concerned look in her eye.
"What is going on?!"
My mom just shrugged her shoulders.
After meeting with Dr. S., he called a pediatric pulmonologist (a specialist in the lungs) and told him about my symptoms. The pulmonologist said that he had heard of my symptoms being side effects of megace, but he thought I should have a breath test to check my pulmonary levels. For this test, I had to sit in a special box that resembled something you would see at a video game arcade. The tech instructed me on how to blow into a tube. Sometimes I had to take a deep breath and then blow it out into the tube; other times I had to blow short and quick breaths into the tube. It was a weird test, but my chest actually felt a little less tight (but my stomach more upset) after all those breaths. Dr. S. wanted me to come back the next day to review the results of the test and get a plan.
 The next day at Dr. S.'s office, he told me that the breath test came back normal. The pediatric pulmonologist wasn't concerned about any lung issues, and Dr. S. felt that I wasn't in danger. Even though the megace was making my chest tight (and not making me hungry), it was determined that I should stay on it. Dr. S. had been communicating with the doctor in Iowa City, who made his opinion clear. I tried to not feel discouraged and exhausted as I left the hospital. I had been to the hospital three days in a row: Wednesday, Thursday, and Friday. I kept taking megace through the weekend even though it was still making my chest tight and making me so tired that I fell asleep in church AND after church. There was definitely a direct correlation between taking the megace and my symptoms. My mom e-mailed the doctor in Iowa City to ask how long I was supposed to take megace. I had been on it for almost a week, and my appetite was still very poor. I still "pushed past the nausea" and forced huge portions and snacks down. I was completely miserable.

Dr. ______
As you might have noticed, I have yet to give the doctor in Iowa City a name. I usually refer to my doctors by the first initials of their last name for privacy purposes. I will not, however, be using the first initial of the doctor in Iowa City. Why? This doctor deserves a special and different title: Dr. Satan.
On Monday, January 31, one week after my first appointment in Iowa City, Dr. Satan replied to my mom's e-mail. I was the first person to see the e-mail, and as I read it I could feel my blood boil. Dr. Satan wrote in his e-mail that I was mentally blocking the megace from working and that I was had "anorexia nervosa":
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Anorexia nervosa: an eating disorder that makes people lose more weight than is considered healthy for their age and height. Persons with this disorder may have an intense fear of weight gain, even when they are underweight. They may diet or exercise too much or use other ways to lose weight.
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Dr. Satan also requested that I seek help from an eating disorder clinic immediately. My medical evaluation was fine, and everything pointed to psychiatric issues. He concluded his e-mail by saying, "this is difficult, I know, but it is time."
I felt as if I had been doused with ice cold water. I couldn't move, speak, or think. After my mom read the e-mail, I completely lost it. I started on one of my famous crying rants, and my mom told me that I needed to be respectful of Dr. Satan....that didn't last long. That business card that he gave me in his office? I wrote scathing things on it and shredded it. Dr. S. was consulted, and he did not feel that I had an eating disorder. How could I be accused of something like that? Yes, I did not enjoy eating, but that was because I felt awful after eating. How can anybody who had lived with chronic nausea for nine months enjoy eating, when all it did was make their symptoms worse?! My parents were obviously on my side and wrote Dr. Satan back defending me. I was so furious that I didn't know what to do. I knew I shouldn't have gone to Iowa City, and now I knew that I had been right. In the meantime, I still had a life to live...even if it wasn't a very happy one. I was so stressed out that everything I ate tasted like salt. My mom had the same problem as well. We didn't tell anybody, with the exception of medical professionals and my grandparents, about what Dr. Satan had accused me of. When one of my drama teachers in our homeschool group asked me how I was feeling, I put on a brave face and said that I was trying a new medicine. This teacher told me that she was dealing with some stomach issues as well. She had just been through testing for food allergies, and that gave me the idea of being tested for allergies as well. An appointment was made with an allergist for the end of the month--his next available date.
At the beginning of February, I started to have pain (in addition to nausea) in my abdomen. All of my issues have been with my stomach and not in my abdomen. I thought it was maybe the increase in the amount of food I was eating. Whatever it was, it quickly grew uncomfortable. Even though I felt like I was eating a huge amount of food, I was not gaining weight at my weekly weight checks with Nurse T. My moods and emotions were also out of control. I felt very anxious and clingy to my mom.
The next fight with Dr. Satan came shortly after his accusation of me having an eating disorder. My mom e-mailed him saying that we wanted to stop the megace. It wasn't making me feel hungry, and it was still making my chest very tight and uncomfortable. At the appointment, Dr. Satan had suggested trying amitriptyline if I was still struggling with nausea after trying the megace. Dr. Satan replied that I could stop the megace. He also said that he would not prescribe any medicine until I was evaluated by a psychiatrist. Dr. Satan was more than willing to arrange a consultation for me in Iowa City...like we all didn't know that he would be influencing the psychiatrist! I didn't know what to do at this point. How was I ever supposed to move forward? I so obviously didn't need to see a shrink, but Dr. Satan wouldn't help me unless I did. This was a definite turning point in my hatred toward Dr. Satan. When I wasn't scheming up ways to get revenge, I was so upset. During very weak times, I would cry myself to sleep because of him. I would dream about him and wake up soaked in sweat. Any mention of the University of Iowa, especially the hospital, or eating disorders caused me to panic. I felt my body stiffen whenever I checked the e-mails. If there was an e-mail from Dr. Satan, my heart began to race and I would shake. I needed the right medicine, and it wasn't going to happen until I fulfilled Dr. Satan's request. My mom made an appointment for me to see my pediatrician, Dr. S., to get his opinion. Dr. Satan's e-mail response to that was that I was "excessively thin" and he was "confident" that I had an eating disorder. He also stressed that I seek help before "life-threatening" complications from eating disorders happened.
I am going to break away from the story for a while to remind you of a few things: Dr. Satan is a pediatric gastroenterologist. He is not a psychiatrist or a specialist in eating disorders. Sure, he said he was confident that I had an eating disorder, but what did he base that on? He had judged me before he even met me. I know for sure that he was already thinking about an eating disorder before our first appointment. Another thing, I think one of the many reasons why I was so upset about Dr. Satan was that up until this time, I had experienced nothing but the top care and concern from my doctors in Des Moines. My pediatrician, both GI doctors, endocrinologist, surgeon, and infectious disease specialist were so kind to me. I could tell that they were concerned about me and they wanted to do everything they could to help me. Even though what I was going through was very rough, I had the assurance that the people on my medical team were the best out there. Then I met Dr. Satan. His accusations, arrogance, and pride were so big. He was lazy. He didn't want to actually search for a real answer to my problems; he would rather just blame it on an eating disorder.
 When I met with Dr. S. on February 13, we discussed meeting with a "shrink" to get an evaluation to shut Dr. Satan up. Dr. S. thought it was a good idea to get an evaluation to use as an "insurance policy" so nobody would ever be able to accuse me of having an eating disorder again. Dr. S. gave us the names of several psychiatrist (psychiatrists are usually also MDs so they know about medical diseases as well as mental diseases) to look into. In addition to the shrink talk, I was having new symptoms that were starting to concern me. I had recently started feeling a squeezing and tightening feeling in two areas of my abdomen. The pain was worse after eating, I was more gassy than usual, no relief after going to the bathroom, bloated feelings, and I felt like I had a weight pressing down on my abdomen. Dr. Satan ignored all of these symptoms, and Dr. S. wasn't sure what to make of them. All of my GI issues had been in my stomach, and now all the issues seemed to be moving down toward my abdomen. I was very much looking forward to my food allergy testing at the end of the month. Besides gluten, there were no other obvious food trends. I was a little sensitive to large amounts of dairy so I had coconut milk, yogurt, and ice cream. We made the mistake of telling Dr. Satan in an e-mail that I was going to be tested for food allergies. He replied that I could not have any food allergies because I didn't have any hives, rashes, or wheezing. He also warned us not to let "theoretical concerns" distract us from the "likely problem" of an eating disorder.
At my weekly weight check on February 21, I felt even worse. The pain, tightness, pressure, and bloating in my abdomen was increasing. Dr. Satan was notified of these worsening symptoms, to which he replied with nothing but a "thanks" for the update. February 22 was a very bad day. I was in so much pain that I couldn't make it to drama, and I took a nap in the afternoon. I told my mom that I felt like my intestines were dying. To distract me, my mom came up with the fun idea to do at-home pedicures and play board games that evening. I had so much fun! I laughed hysterically until tears were streaming down my cheeks--most tears recently cried were out of pain, frustration, and anger. It was a bright memory in the midst of all the darkness that I was dealing with. Two days later, the pain in my abdomen woke me up. I had an appointment that day with Dr. S., who ordered a STAT abdominal CT scan. This unexplained pain that kept getting worse had gone too far, and Dr. S. stepped in a did a job that should have been done weeks ago by Dr. Satan. The pain was very intense in two areas of my abdomen: close to my hips on both side. I had a feeling that I was going to be at the hospital for a while so I came prepared with a book. Dr. S. sent me across the street for the CT scan. I had to drink four glasses of contrast in one hour...that's one glass of disgusting chalk-like liquid every 15 minutes. I was thrilled to see that the under-sized CT waiting room had Sudoku puzzles! Sudoku had been a great way get my brain to think about something else. We had to wait forever to be checked in and given the contrast. While I was slurping down the contrast, Nurse T. surprised my mom and I with a visit! It was so great to see a friendly and familiar face. Nurse T. told us her incredible health story and gave us lots of encouragement. She said that she was thinking about me all the time and that her and Dr. S. knew my symptoms were due to a physical problem. She encouraged me to keep fighting because her and Dr. S. weren't going to give up. Listening to Nurse T. helped me get the last glass of contrast down. Ever since her surprise visit, we have developed a very special relationship that I am so grateful for! Finally, it was my turn on the CT machine. An IV with saline was started, and the tech warned me that I would probably taste the saline in my mouth and that I also might have a very strange sensation that I was peeing my pants. She was absolutely right! It was so weird. I was sent into a tube that went up to my neck. An automated voice told me to take a deep breath, and there was a timer on the machine so I could see how long I would have to hold my breath. There was a picture on the celling of a blue sky with clouds. After several pictures were taken, I was allowed to leave the cramped waiting room and wait for the results in the atrium outside the waiting room. My mom and I split a delicious Greek salad for lunch, and I chugged a bottle of water to get the disgusting taste of barium out of my mouth. The CT scan was considered STAT, which would make a person think that they would get answers back immediately. Wrong! STAT in medical terminology is like saying there's only ten minutes left in a football game. My mom and I waited in the atrium for 2 1/2-3 hours before the woman at the check-in desk told us that the results had been sent to Dr. S., and I was to go over to his office. As I walked across the street, thousands of thoughts were running through my head. What was wrong with me? I had a horrible feeling that the two parts of my abdomen that hurt were parts of my intestines that died or something. Would I have to go through another surgery? Was there a huge tumor inside me? What was wrong?

At Dr. S.'s office, he told me that there were no tumors, cysts, or infections in my abdomen, and there were no tangled, blocked, or dead intestines. The cause of all the pain, pressure, bloating, and tightness in my abdomen: colonic constipation.
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Colonic constipation: an ailment where the entire colon is impacted with stool.
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Yes, it's disgusting and nobody wants to think about it, but constipation is a bigger problem in our society than most people think. What caused this? It's still unclear, but it may have had something to do with all the medicines I was on. Dr. S. prescribed a "evacuation" using a lot of Miralax and enemas. I didn't see how being constipated could cause as much pain as I was in. After spending a very long SEVEN HOURS at the hospital, I was ready to be home. Unfortunately, being home meant staying camped out near the bathroom. I didn't know when the "evacuation", as Dr. S. put it, was going to hit. By the next day, I had to drink a bottle of magnesium citrate. That opened the flood gates and let the evacuation take place. To keep everything moving, I drank a mega dose of Miralax three times a day and a magnesium citrate every day for four days. Getting those magnesium citrates down was very hard, but my mom and I looked through old photos of our vacations while I drank it and chased it down with a fun drink. The cleanout was actually helping me feel better...the pain was slowly decreasing! I had even felt hungry a few times. I had a follow up with Dr. S. a couple days into the cleanout. I had lost 1 1/2 pounds during the cleanout, but Nurse T. said that was typical during cleanouts. Dr. S. encouraged my mom and I by telling us: "you are on the final lap of the race". The last missing puzzle piece was the food allergy testing. I had noticed that my stomach felt more queasy when I ate something with dairy so the allergist, Dr. W., told me to go ahead and go dairy-free even though all the food allergy tests came back negative. Dr. W. said I could be lactose intolerant or sensitive to dairy. The dairy-free diet was started right away. I felt so great after that first dairy-free lunch! I can still remember the peanut butter and jelly on a tortilla, dairy-free yogurt, and chips that I ate. I even felt well enough to make it to play practice. My stomach was still a little upset, but it was noticeably calmer without eating anything with milk.
The cleanout ended up lasting from February 24-March 1. It was gruesome, but each day I was feeling better. My mom e-mailed Dr. Satan and told him that the cleanout and going dairy-free was greatly improving my quality of life and symptoms. What did the high and mighty (*sarcasm intended*) respond to that? Nothing. He didn't respond at all. His theory of an eating disorder had just been proven wrong. Not by a shrink, but by the fact that I was dangerously constipated. Symptoms for extreme constipation included nausea, loss of appetite, abdominal pain, fullness, bloating, and pressure on the abdomen. Constipation...not an eating disorder!

TO BE CONTINUED.....