April & May 2013: Winter Has Come Back Again

April 2013:

We left off with me having stomach pain and extreme fullness just a few bites in to breakfast on April 12, 2013. This continued for the rest of the day. Thankfully, I was able to escape the pain while having a fun time with my friend Elizabeth. The pain was back the next day and stayed for the rest of the weekend. I had increased my Miralax, in case I was constipated, but that didn't seem to be the problem. I was starting to get worried. My biggest fear was that the gastroparesis was getting worse; what if I ended up having to have feeding tubes like Beth? My mom called Nurse T. to get her opinion. We had stopped the weekly weight checks at the end of 2012, and while it was great to not go to the hospital every week, I did miss talking with Nurse T. Nurse T. suggested that we come in to see Dr. S., my pediatrician, so we made an appointment for the following Tuesday. At that appointment, Dr. S. said, "I see people all the time who have stomach aches, but I always flinch more when it's you." Dr. S. said that it could be a virus, but he seemed just as worried as we were. Dr. S. decided to order an abdominal x-ray because of my history with stomach/bowel problems. Besides, the pain and fullness, I felt fine. I didn't feel lethargic or achy. After waiting for what seemed like an eternity, the x-ray results came back. I had, once again, colonic constipation. I just about cried. I did not want to go through another clean out process again, but it was the only option. In addition to this, I was also very close to finishing my junior year of high school. That means I was preparing to take the ACT test in a few weeks, and I was very nervous. I didn't have time to get cleaned out! I was somewhat relieved that it was "just" colonic constipation, and not worsening of my gastroparesis or the dreaded "something else". I started the all too familiar clean out process by drinking another magnesium citrate. I did have improvement after the clean out, but the fullness returned a few days later. As my luck would have it, Dr. S. was on vacation so Nurse T. suggested that I see a different doctor within their practice, Dr. El. If you remember from "The Devil Wears a Lab Coat", I saw Dr. El. briefly when the medicine Dr. Satan put me on caused my chest to feel tight. Dr. El. is a very sweet doctor who calls his patients "sweetheart", "beautiful", and "princess". I was a little nervous to see a new doctor, since Dr. S. knows me and my history so well, but a few minutes with Dr. El. assured me that I had nothing to be nervous about. Dr. El. wasn't so sure that I was completely cleaned out, even with the magnesium citrate. He wanted me to do an enema one a day for three days and drink mineral oil three times a day for 3-5 days. I think we're all familiar with enemas so I won't disgust you by providing details about that. Mineral oil, however, is something not everybody is familiar with:
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Mineral Oil:  a distillation product of petroleum, especially one used as a lubricant, moisturizer, or laxative.
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Drinking mineral oil is like drinking Elmer's glue, the runny type. It's slimy and covers your entire mouth in this slime. It was absolutely disgusting! I was spending a lot of time in the bathroom, but still not feeling like my normal self. I was still full early into meals, and my stomach felt like it had been beaten with a baseball bat after I ate. I was starting to doubt that this was just constipation.

May 2013

With school and the ACT test behind me, I tried to start enjoying my summer. I was working more hours at the daycare and coming up on my one year anniversary there. Wedding plans were also picking up speed as we approached the July date of my brother's wedding. Showers, dress shopping, craft days, and mint making days took up most weekends. I still continued to run and make great progress on the Couch 2 5k plan. I also still battling these mysterious new stomach issues. I felt so full that eating was once again very difficult. I had stopped eating all bread products because they felt too heavy in my stomach. Nothing seemed to help my stomach; I tried Altoids and peppermint tea but that didn't help. The only thing that made a tiny difference was sucking on peppermint hard candies; I usually averaged about five a day. I saw Dr. El. again on May 1 since I had absolutely no improvements. Dr. El. wanted me to have another x-ray of my abdomen, but his in office x-ray tech wasn't there that day. I made the familiar walk over the hospital and into outpatient admitting. I usually have great experiences with x-ray techs, but this time wasn't so great. I had two women, one of which was a student, who argued the entire time. They disagreed on where the top of my leg was, where to put the x-ray, and how many pictures to take. I was relieved to finally get away from them. Dr. El. told us that once the results were back, he was going to ask both Dr. S. and Dr. Di (my pediatric GI) to look at the results with him. Dr. El. was also starting to wonder if constipation wasn't the problem, and he thought it was time to bring Dr. Di in. Although I would rather not be in this situation, I was comforted by the fact that all my doctors would be working together for me.
 The next day, I was finishing taking a shower when I heard my mom run down the stairs and knock repeatedly on the bathroom door. Something was wrong. I could hear panic in my mom's voice as she said, "Sarah....the receptionist from Dr. Di's office called, and he wants to see you tomorrow morning." We hadn't heard anything from anybody about the x-ray results. Was it so bad that my GI doctor wanted to see me? It's difficult to get an immediate appointment with Dr. Di so why would they need to squeeze me in as soon as possible? My mom called Nurse T. to get her opinion. Nurse T. said that the x-ray showed that my colon looked much better, but she thought we should take the appointment. I was scheduled to work a full day at the daycare, but my boss said I could leave for the appointment and then come back. I was so nervous; I had no idea what to expect.
 The unexpected appointment fell on my second anniversary of being gluten-free. I tried to not think about how depressing it was that I was still having stomach issues even after two years of being on the gluten-free diet. My mom picked me up from work and we drove though a snowstorm (yes, a snowstorm in May) to Dr. Di's office. When he asked me what was going on, I did my best to make it clear that I felt full but not a constipation-like full. Dr. Di said that he wasn't 100% sure that constipation was the problem, but he wanted me to do one more clean out just in case. When Dr. Di asked if I was able to get a magnesium citrate down, my mom informed him that I had drank five bottles of magnesium citrate since this problem started less than a month ago.
"You drank five bottles of magnesium citrate?!?!" He exclaimed.

Surprise from my mom!

My mom further revealed that I did three enemas (to which Dr. Di rolled his eyes and stuck out his tongue) and 15 ounces of mineral oil for five days ("oh ew...I don't even know why they use mineral oil anymore!"). Thankfully, Dr. Di had a much less aggressive clean out plan: a mega dose of Miralax twice a day for five days. If I still didn't have any improvement, I would swallow radioactive pills and have x-rays taken to see where the pills were and if there was a slow down anywhere. Dr. Di had been in communication (by texting!) with Dr. El., and they both thought that I could have gastritis--inflammation of the stomach. After confirming the plan, Dr. Di left with his usual, "hang in there", and my mom drove me back to work. I went into the appointment feeling very nervous, but I felt confident about the next plan. All I need is a plan.
 Since it was my second anniversary of being gluten-free, my mom surprised me at work with green (the celiac disease awareness color) flowers and balloons!

I was going to the bathroom more, but I still felt the same. I finally knew that constipation was not the problem. Dr. Di prescribed omeprazole to treat possible gastritis. When I picked up the medicine at the pharmacy, I asked the pharmacist how long it would take to kick in.
"It depends." The pharmacist said. "What do they think is wrong with you this time?"
That is a sign that you have been too sick for too long!
 On Friday, May 10, I started the Sitz marker test:
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Sitz marker test: Radioactive pills are swallowed and two x-rays are taken three days apart. The x-rays show how the rate that the pills are moving and checks for obstructions.
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Call me a nerd, but I think this is incredibly cool! Nurse J. in Dr. Di's office gave me the pills to swallow, and my mom and I went over to the hospital for yet another x-ray. We would come back for the next x-ray on Monday.
 Meanwhile, I completed a big accomplishment: I ran all the way around the 2.2 mile lake! I was so proud of myself and the progress I had made. Although my stomach was fighting me again, I fought back by doing what I wanted to do. The Sitz marker test results came back on May 14, showing that I had slow transit constipation on the right side of my colon where the small intestine hooks on to the large intestine..

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Slow transit constipation (STC): This syndrome is attributed to disordered colonic motor function.
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This sounds like another scary diagnosis to add to my list (and maybe for some people it is), but it really isn't. Dr. Di wanted me to take two senna (a laxative) tablets for two weeks. My mom asked when the omeprazole would start working, and Nurse J. said to give it two weeks. Meanwhile, I continued working and running while fighting the stomach pain and fullness. Towards the end of May, my symptoms began to get worse. My stomach started to hurt constantly, not just after eating. I kept track, and I felt full three bites into a meal. I was already eating half size portions because of my gastroparesis, but now I could only manage 1/4 of a meal. I jokingly said that it was time to take another beating whenever it was time to eat, but that's truly how my stomach felt after I ate. I was also tired and usually took a nap in the afternoon.

A climbing wall champ

 I tried to enjoy myself at our annual Memorial Day camping trip. I climbed to the top of the climbing tower though! The weather was nasty and prevented us from being outside as much as we usually were. Plus, I was so uncomfortable. Now I woke up feeling full and in pain...before I even ate anything! My mom was going to call Nurse J. as soon as the long weekend was over. Something was definitely very wrong. I tried to not get down in the dumps about how I was feeling. I was still shocked that all this had happened again. How did I go from delivery cookies because I felt so great to x-rays and numerous doctor appointments?
 My mom called Nurse J. after Memorial Day and told him about my symptoms. The omeprazole didn't help and taking the senna tablet didn't help. What else could we try? I probably should have seen what happened next coming, but it still took me by surprise. I was outside walking my cat (yes, I put a leash and collar on my cat and walk him around the backyard) when my mom came outside and over to where Oliver and I were. I could tell by the look on her face that she wasn't happy.
"Dr. Di wants to do another endoscopy and colonoscopy on June 6."

TO BE CONTINUED.......