Another Diagnosis

April 2012

I was actually looking forward to the gastric emptying scan (GES). I was getting tired of feeling so full so early in a meal. It made finishing the meal very difficult. I felt so full all the time. I knew there was no way that this test would come back normal. The GES was a rather different test. I looked it up online and learned that I would eat radioactive eggs and toast--my mom called ahead and informed the techs that I would be bringing my own gluten-free toast. X-rays would be taken of my stomach and the movement of the radioactive eggs would be tracked to show if my stomach was emptying at a normal rate. I had to fast for 12 hours before the test, and I still was not hungry when I arrived for the test. A very sweet tech explained to me how the test would work. I was worried that I would have to stay until the eggs were out of my stomach, but the tech said that they would take x-rays for two hours, then I could leave. A radiologist would then look at the x-rays and estimate the total time. The tech brought me microwaved scrambled eggs that she said were injected with something radioactive. I was a little nervous to eat them, but they tasted like regular scrambled eggs. The hospital even provided salt and pepper shakers! While eating my meal, the tech said that they used to feed people beef stew with liver pate! After I finished the eggs and toast, I felt nauseous and full. We waited a little bit and then took the first x-ray. I was able to see the monitor and a glowing mass in my stomach that was the radioactive eggs! It was actually really cool. Every 15 minutes for two hours, I had x-rays taken for 30 seconds--one set with my stomach facing a big x-ray board and another set with my back facing the board. The time actually went by quickly. I played on my iPod, read, did Sudoku puzzles, and watched the TV show "House" on a small TV that was in the room. Since we were able to see how the radioactive eggs looked in my stomach, my mom and I tried to make out how it was moving. All the x-rays looked the same though. There was a big glowing ball at the top of my stomach that never moved, and the rest of the glowing eggs spread out into a backwards L shape. I am by no means a professional, but I could tell that the glowing mass of radioactive eggs at the top of my stomach did not move. After two hours, I was allowed to leave. The tech wished me luck and said that we should hear the results in a few days.
 Two days later, April 27, Nurse J. from my pediatric GI doctor's office called. Nurse J. confirmed that there was a delay in my gastric emptying. Delayed gastric emptying is also known as gastroparesis:
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Gastroparesis: Gastroparesis is a condition that reduces the ability of the stomach to empty its contents.
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I wasn't surprised to hear of my new diagnosis; I had already self-diagnosed myself with gastroparesis after doing some research online. Dr. Di was putting me back on erythromycin, a medicine which is supposed to increase gastric emptying and told us to report back in one month. I was beginning to get weary of all of this. I had been fighting constant nausea for over a year, and I just wanted to feel better. How did I start off with mono and end up with three chronic and lifelong digestive issues? My weight was still an issue. I felt like I was eating so much, but my weight kept dropping. In one week I lost one and a half pounds. Nurse T., who I did my weekly weight checks with, said that if I kept losing weight, she might have Dr. S. call Dr. Di. I was terrified at the prospect of that; I was worried Dr. Di would put a feeding tube in me.

May 2012

On the second day of May, I saw a little tiny glimmer of hope. I had accompanied the family that I babysit for to Pella, Iowa. The kids' mom was running a 5k race for the kick-off of the annual Pella Tulip Festival. It was unusually hot for the beginning of May. While walking around Pella with the kids, I noticed that for the first time in a long time, I felt good! I didn't have the severe pain that I had been dealing with for two and a half weeks now, and my stomach wasn't horribly upset. I didn't know what was happening, but something was changing.

I made this cupcake for my
first GF anniversary

 The next day, May 3, was my one year anniversary of being diagnosed with celiac disease. It was hard to believe that I had been gluten-free for a whole year! So much had happened in one year: tests, scopes, surgery, Iowa City, colonic constipation, hospitalized, and a double diagnosis of IBS and gastroparesis. It was a bittersweet anniversary: I was proud of myself for not cheating on the GF diet, but at the same time it was sad to think that I had been on a GF diet for a year with no improvement.
 However, May 4 was an exciting day. I had spent the whole day feeling that something was different, and I couldn't put my finger on it. At the end of the day, it finally hit me. I didn't have any level eight abdominal pain!! I had some uncomfortable feelings in my stomach/abdomen, but they were quickly resolved with Dr. Di's Altoid tip. I was so thrilled and grateful. I felt like I could finally see the light at the end of the tunnel. Nothing else could go wrong, right? WRONG. The very next day, May 5, I felt a completely new feeling in my stomach. After a great day the day before, my mom hoped it was a positive feeling. It wasn't. It took a few days for me to pinpoint what exactly this new feeling was, but I eventually did. Burning. My stomach burned. On May 10, I had had enough. My mom called Nurse J. who reported this to Dr. Di. I was instructed to stop the erythromycin because it can be harsh on the stomach. When my mom asked what medicine I would be put on for the gastroparesis, the answer shocked us. There was no other medicine. Dr. Di suggested eating six smaller meals a day, but if it gets too hard he could put a tube in. Eating was so unpleasant that I wanted to eat it all at once and get it over with. How was I supposed to eat six small meals a day?! My mom was very upset--she was responsible for feeding me but how was she supposed to? My mom called Nurse T. who gave us some tips. Nurse T. suggested dividing lunch and dinner in half. If I had a grilled cheese sandwich, cut it half. Put one half on a plate and eat it now, and put the other half on a plate to eat a couple hours later. I immediately hated the whole concept. My weight was dropping with eating a regular size meal; what would happen if I didn't eat the other half of a meal because I was busy? Was I really supposed to drag food with me everywhere I went? My mom and I were frustrated, confused, and overwhelmed. I just wanted a medicine that would fix the gastroparesis, but I had to realize that there is no medicine. My mom asked Nurse T. if she could find out how delayed my gastric emptying was. It took 148 minutes for my stomach to be half empty; that's 2.5 hours. For my stomach to be completely empty, it took 296 minutes or about five hours. The average, normal gastric emptying, stomach is 75% empty in 90 minutes or 1.5 hours. That is a HUGE (or maybe I should say LONG) difference between the average stomach and mine. It took a while, but eventually I got on the new eating schedule. I hated eating every two hours, like a newborn baby. My mom had to set an alarm on her phone for when I was supposed to eat next, and that quickly became old. I did feel better (less full) with eating smaller meals, but I still wasn't hungry in between meals.
 Even with a burning stomach, I still managed to live a somewhat normal life. I had a sleepover with my friend T., which made me feel victorious. I could actually stay up late! There were many days when I looked forward to going to bed, but not on this day. Of course, the victorious feeling didn't last long. A few days later, I felt so terrible. I was exhausted all the time, I felt very nauseous, and my stomach still burned and was sensitive to the touch. I had been off the erythromycin for eight days; I was starting to think the burning had nothing to do with erythromycin in the first place. Two days later I went to see my pediatrician, Dr. S. Dr. S. agreed that my new and continuing symptoms probably weren't related to erythromycin as it takes six hours for the medicine to leave the body. He did a strep and blood test, both of which came back normal. Dr. S. thought it might just be a virus but wanted me to call Dr. Di if I wasn't feeling better in one week.
"But I'm always here for you!" Dr. S. added with his usual spark of enthusiasm.
 After I came home from Dr. S.'s office, I finished my last day of 10th grade. Usually the last day of school is a very exciting and fun day, but I wasn't excited about finishing school. Tenth grade had been very rough. I had surgery, experienced Dr. Satan in Iowa City, went through a vigorous colon clean out, I was hospitalized and diagnosed with IBS, then I received another diagnosis of gastroparesis, and now I had no clue why my stomach burned. During all of this though, I stayed on top of school. It was a distraction; a way to think about something else for a change. It gave me something to do. Now I was starting the summer of 2012 with nothing to do. I was too sick to work anywhere, as my siblings would spend their summer working. I would  babysitting Lucy and Collin for two mornings during the summer, and I knew that would mentally help me. With no school, I didn't know how I was going to fill the long hours of each day. My mom and I had started a routine of getting out of the house every day, and that did help pass the time.
 I was not very positive about summer starting, but I had no idea what was going to happen during the summer of 2012. I'll give you a sneak peak: at some point during the hot summer days, I would gain my health, strength, and life back!

Me and my dear friend T.'s feet at our sleepover :)

TO BE CONTINUED............   

Post-Hospital Life

March, 2012

Happy to be home!

I spent my first day out the hospital in my pajamas, napping in my room. I was so tired from the pain, being hospitalized, and the new medicine I was on. I received a surprise visit from the kids I babysit and their mom. I could hear Lucy and Collin running up the stairs shouting, "Sarah? Where are you?!" I was overjoyed to see their little faces peek into my room. They brought me flowers, a balloon, a picture, and "Number One Ladies Detective Agency"--a great show! Lucy and Collin climbed all over my bed, scared the cat off my bed, and thought it was funny to see me in my pajamas.
 I still felt the same. I was more comfortable at home, but I still had level eight abdominal pain. I guess this was what having IBS was like. The next day, two days after I was released from the hospital, I went back to the hospital for the ultrasound ordered by Dr. G., the adult GI doctor who diagnosed me with IBS. Ultrasounds were no big deal by this point; I had been through so many that the whole process didn't even bother me anymore. When the ultrasound came back normal, my mom called Dr. G.'s office asking (again) for pain medicine. When it was (again) denied, Dr. S., my pediatrician, came up with an over-the-counter plan consisting of Tylenol and Aleve. Dr. G. wanted us to contact Dr. Di, the pediatric GI doctor, if I was still in pain on Monday. On this same day, a huge packet arrived for me in the mail from my Uncle Mark in Wisconsin. It was full of materials from the Mayo Clinic all about IBS! It was all very interesting and helped me fully understand my new diagnosis.

Flowers from my favorite kids!

 On Monday, I was still struggling through the constant pain. My mom got in touch with Dr. Di's office. If you remember from previous posts (see "August 2011: The Second Opinion"), Dr. Di was my second, and favorite, pediatric GI doctor. He had not seen me since October of 2011, after my surgery, when my only complaint was unending nausea. An appointment was made for April 16. It was March 26, and April 16 seemed like an eternity away. The next day was a Tuesday, and that meant I babysat Lucy and Collin. I didn't feel like I was able to drive or babysit by myself so my mom came with me. Spring had sprung early in Des Moines so we spent a lot of time outside with the kids. While we were babysitting, Nurse T. called to check on me. After we finished babysitting, we had a picnic lunch at a nearby park and then went to my weekly weight-check with Nurse T. It was hard to believe that I had been hospitalized a week ago. Nurse T. was surprised to hear that I was still in constant pain. It sounded like pain from IBS came and went throughout the day; nothing like what I was dealing with. On our way home from the hospital, Nurse J. from Dr. Di's office called. Dr. Di wanted me to take two tablespoons of Benefiber twice a day. The normal dosage for Benefiber is two teaspoons! Dr. Di's theory was that extra fiber would bulk up the stool and thus be able to release an IBS pinch in the colon. I had done some research, and I knew what I needed: amitriptyline. Dr. Satan in Iowa City was supposed to put me on amitriptyline if eating more didn't help, but then he decided he was an expert in eating disorders *sarcasm intended*. Dr. Di wanted to try the Benefiber first, but he would prescribe amitriptyline at my appointment in April if the Benefiber didn't work.

Babysitting <3

My mom and I decided to walk around the lake after we were finished at the hospital. I was proud of myself for being able to walk two miles one week after being hospitalized! As we walked, we talked about how great it was to be back in Dr. Di's care. When I was Dr. Satan's patient, I felt alone, helpless, lost, and afraid, but now that I was back in the care of a doctor who I knew was smart, kind, caring, and compassionate, I didn't feel those emotions. I felt very safe, secure, and protected.
 At home, I didn't have much energy or strength to do anything. I mostly sat in the rocking chair with a heating pad on my abdomen, Oliver on my lap, and absorbed in a good book. My mom was doing research on natural, homeopathic ways to treat IBS. She had discovered a peppermint oil capsule that was legendary for treating IBS. She made a note on her long list of things to talk to Dr. Di about. Another thing she discovered was chiropractic care. My mom immediately made an appointment with a friend of ours who is also a chiropractor. Digestively, I didn't feel any better after the appointment, but my neck and back felt better! The Benefiber also didn't seem to make any difference. I knew I needed amitriptyline, but it looked like I was going to have to wait until April 16 to get it. The days were dragging by, and I was quickly getting bored and restless at home. My mom and I decided we would start going somewhere every afternoon, once school was finished. At first we started by going on picnics, walks, and buying groceries, but as time progressed we did a lot of really fun things!

April 2012: This is Where the Healing Begins

 The beginning of April brought some dreaded events. The Iowa Assessment Tests (or Iowa Test of Basic Skills). Even though I'm homeschooled, the state law required that I take these tests. I think they're completely pointless and a waste of time, and I was even more intolerant of them while dealing with level eight abdominal pain! We got in touch with our supervising teacher, who told me not to worry about the results. The testing was only in the morning for a few days, and I had the rest of the day off from school. April 4 was also a not-fun day. It was the day that my GI journey had begun. If you recall from "April 2011: Friends to the Rescue, Wills & Kate, & GI Doctor", April 4, 2011 was the day that I woke up with diarrhea and severe nausea. Here I was, one year later, with a double diagnosis of celiac disease and IBS, no gall bladder, severe abdominal pain, constant nausea, a nightmare of a visit to Iowa City, and a hospitalization under my belt. I tried to stay positive, but this anniversary was a tough one for me. However, I did believe an end was in sight. Dr. Di had prescribed amitriptyline, the medicine I knew I needed, before the April 16 appointment! My mom felt that the medicine Dr. G. had me on was causing me to feel worse so she called Nurse J. at Dr. Di's office again. I was to stop Dr. G.'s medicine, stay on the Benefiber, and start 25mg of amitriptyline!
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Best medicine ever!

Amitripyline (am-i-trip-t-lean) is an antidepressant used to treat depression issues. When given in a low dose (75 mg or less), amitriptyline creates a positive brain-to-gut connection so digestion is received as normal by the brain.
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I had never been so thrilled to go to Walgreen's to pick up medicine! I was even more excited when I opened up the bottle to see that my dream medicine was my favorite color: mint green! Dr. Di even said he would increase the dose at my appointment in a few weeks if I wasn't feeling better. As I took my first dose of amitriptyline that night, the Christian band Tenth Avenue North's song "Healing Begins" played in my head:
"This is where the healing begins/this is where the healing starts/when you come to where you're broken inside/the light meets the dark"
I was put on this medicine before, way back in 2011 when I was with my first pediatric GI doctor, but it didn't work then. I didn't even experience its famous side effect of tiredness after taking it. This time around, I experienced the tired side effect in full force! Now I understood why I was supposed to take it at night: about 30 minutes after taking it, I fell into the deepest sleep I have ever slept! I had weird dreams all night and woke up the next morning feeling like I had woken up from anesthesia. Amitriptyline has a sleeping pill component to it, which causes the sleepiness. It was so great to finally be able to sleep through the symptoms that had either prevented me from sleeping or woken me up in the middle of the night!

Easter 2012

While waiting for the amitriptyline to work its magic, the Benefiber was causing some serious problems. It had plugged me up so bad that I had to drink another bottle of magnesium citrate. I had missed so many Lent services, Maundy Thursday, and Good Friday that I was looking forward to Easter Sunday. All of my family would be here, and I was looking forward to a fun day of Easter egg hunting at Grandma and Grandpa's!

Two great friends and their dog!

 By the second week of April, I was starting to gain some independence. I was able to drive and babysit by myself. I drove myself to my friend Elizabeth's house to meet her new puppy, Anya, who was absolutely adorable! It was some definitely some animal therapy. I had also noticed that my level eight abdominal pain was present 95% of the time--down from 100% of the time! While I was overjoyed and very thankful for the small break from the pain, a new symptom was starting to bother me. When I sat down to eat a meal, I took a few bites and then I was ready to stop. I felt full. Since my weight was still low, I couldn't only eat a few bites of a meal. It happened every. single. time. I felt like I had just finished Christmas dinner at Grandma's when in reality I was only 1/3 of the way finished with a meal. I read that it was a common symptom with IBS, but the extreme fullness was almost bothering me more than the abdominal pain. I was very much looking forward to my appointment with Dr. Di, especially after going to hell and back in Iowa City. Dr. Di was just as kind and sincere as he was when I last saw him in October of 2011. He increased the amitriptyline to 37.5 mg-hooray! Dr. Di told me several times that it would take a "full two months" for the increased dose to start working. He also prescribed erythromycin to help with the fullness. He said I should give it one week to work, and then call him. Dr. Di wondered if I might have some "delayed gastric emptying" and wanted me to have a gastric emptying scan. He approved of the peppermint oil capsules that my mom had found, and revealed that he also had IBS. He said that he eats a couple Altoids when he doesn't feel good and it helps instantly. Dr. Di was still concerned about my weight; if I wasn't able to gain any weight, he was going to have to put a feeding tube in my nose. I was completely terrified at the prospect of that. Dr. Di seemed curious about Dr. Satan not running any tests. I was worried about how this topic would be brought up. My mom kept a calm face while telling Dr. Di what happened, but I could tell she was fuming on the inside. Dr. Di didn't seem surprised about the accusations Dr. Satan made, and he told me he was glad I was a psychiatrist to completely rule out any mental issues once and for all. A follow-up appointment was made for four months later, and I started desperately praying that I would be well by then. As I left Dr. Di's office, I felt a familiar feeling of peace. It was all going to be okay. I was back in the care of an excellent doctor who didn't think I had an eating disorder, increased my medicine, and was going to find the answer to this very bothersome full feeling.
 One week later determined that the erythromycin was not working. I still felt unbearably full very early in meals. A gastric emptying scan was scheduled for April 25. I would have to eat radioactive eggs with toast for the test so my mom called ahead and told them that we would be bringing gluten-free toast with dairy-free butter. I even had to bring my own food to the hospital! In the meantime, I was getting very restless at home. I wrote in my diary, "my life is turning into that of a character from a Jane Austen book!" I felt like all I did was read, craft, rest, and maybe go for a walk. I didn't feel up to doing much else, but if I could just hold on for those full two months that Dr. Di talked about...I was going to feel better. I was already getting some relief from the nausea with Dr. Di's Altoids tips!

TO BE CONTINUED.............