October 2011: "Hang in There"

I would like to start by apologizing for the absence. School and other things have prevented me from writing as much as I would like. If you don't remember where we are in my story, please look back through my previous blog posts. Here is a short synopsis: Mono in August of 2010, c.diff in November of 2010, celiac disease diagnosis in May of 2011, doctor change in August of 2011, gall bladder removed in September of 2011. That leaves us at....

October 2011

I was eight days post-surgical when I could sleep in my own bed again. I had to sleep on a recliner in our living room to prevent me from rolling over on to my fresh incisions. Sleeping in my own bed felt so great! October 1, 2011, marks the day that I started to tackle walking around a local lake--my favorite place to walk. I managed to get 1/3 of the way around the two mile loop. I wished I could go further, but I didn't want to push myself. I attempted going back to church just nine days after surgery--that didn't go well. I was only able to stay for 15 minutes before I felt extremely tired, and dizzy. My incisions hurt so bad, my stomach was very upset, and I was freezing. When these symptoms still lingered the next day, my mom called my surgeon's office and talked to a nurse. The nurse thought that I probably had a flu bug, and she was right. I was prescribed ondansetron for nausea by Dr. R., my surgeon, but it didn't help. The flu like symptoms thankfully disappeared as quickly as they appeared, and I was on my way back to recovery.

Post-surgical

 With the flu out of my way, I could clearly grasp how I was feeling. Before surgery, my nausea levels were at an 8-10 (scale: 1-10, 10 being the worst), and after surgery, they were at a 4-6. I often became discouraged because I was still constantly nauseated, but my ever-so-positive mother always reminded me that my symptoms were significantly reduced by the surgery. The sharp pain under my right rib cage where my gall bladder used to be
 was completely gone!  Another appointment with the endocrinologist showed that all my thyroid levels were 100% normal! Were the normal levels connected with having my gall bladder removed? I'm not smart enough to answer that question, but it wouldn't surprise me if they were connected.
 On October 7, two weeks post-surgical, I had my post-op appointment with my surgeon, Dr. R. Dr. R. was very encouraged that my nausea levels had been reduced by 50%. He told me that my gall bladder released bile whenever I ate, but now bile was continuously running from my liver to my stomach. Dr. R. said that it can take four weeks for the body to adjust to the new flow of the bile. He also said that it was normal for me to still be sleepy--I was averaging about 12 hours each night. My incisions looked great, and Dr. R. said that he saw my pediatric GI doctor (Dr. Di) who asked about me. That lead us to a not so pleasant topic: constipation. It's common after any surgery, but since my surgery involved removing a vital part of my digestive track...I was kind of worried. My mom explained that she was filling me with very fibrous foods like apple cider and fruit. Dr. R. responded by saying, "We have ways to get rid of that. My methods are more aggressive than apple juice and prunes." With that, he left the room promising to return. I sat in the exam room imaging all sorts of horrible things that he could bring back. He quickly returned with a bottle of magnesium citrate--an extreme laxative usually used for colonoscopy prep. I had already downed a bottle of magnesium citrate so I knew what to expect.  Dr. R. said that constipation causes nausea. Ideally, getting cleaned out and waiting for my body to adjust to the new flow of bile could knock out the last remaining symptom of nausea. If not, Dr. R. suggested that I go back to see Dr. Di.


Babysitting!

 At home, I drank the magnesium citrate and chased it down with a Naked juice (fiber!!) that my sister brought back from college for me. Sure enough, I was relieved the next morning. I also walked all the way around the lake...nine days after surgery! I did not feel well after my two mile walk though. I spent the rest of the day on the couch. I was able to make it to church the next morning. It was great to see everybody again. I also first experienced the bizarre phenomenon  of phantom pain--something that still bothers me occasionally today. It was so lifelike that I often had to look at my incisions to remind myself that my gall bladder wasn't there anymore. I was also able to babysit Lucy and Collin for the first time after surgery.
 As I slowly gained my life back, I began to feel frustrated by not feeling 100% better. Yes, my nausea was much less severe. I was very grateful for that, but I was still desperate for total relief.

"It Sucks to Not Feel Good"
About four weeks after my surgery, I went back to see my pediatric GI doctor, Dr. Di. I was anxious to hear what he was going to say. My worst fear was that another great doctor would run out of ideas, and I would have to go to the specialist in Iowa City. While both Nurse J and Dr. Di were happy to hear that I was feeling better, Dr. Di was still concerned about my weight. At this point, I had lost 32 pounds. I had no appetite whatsoever so eating was difficult, even if I was eating very small amounts. Dr. Di acknowledged that not feeling well (in his words, "it sucks to not feel good") interferes with eating well, but my weight was getting very low. As for the persistent nausea, I had stumped another doctor. Dr. Di said we should keep the November 7th appointment in Iowa City. Until then, Dr. Di wanted to try an appetite stimulator. He thought that maybe eating more would actually help my stomach. I was instructed to "push past the nausea" and try eating more. The thought was very daunting; eating made my stomach more upset to naturally I did not enjoy eating. Dr. Di wrote out a prescription for cyproheptadine:
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Cyroheptadine (cy-pro-hep-ta-dine) is usually used to treat allergy symptoms and hives, but is also used as an appetite stimulant
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The new plan was to try the appetite stimulator. If eating more seemed to be helping with the nausea, Dr. Di would increase the prescription. The November 7th appointment would be kept unless something miraculous happened.
"Hang in there!" Dr. Di said with a reassuring smile before my parents and I left.
I was beyond crushed. I just knew eating more would do nothing but make me feel worse, and I would have to go to Iowa City. My grandpa, however, was optimistic:
"Sarah eats more; she feels better; she doesn't go to Iowa City."

I was no longer allowed to serve myself meals; my mom filled my plate and then politely told me to finish everything. At first, it was awful. Before I ate, my nausea level was at a four. After I ate, it never rose higher than a six. I was expecting a huge increase in nausea after eating a regular serving (not the pathetic servings that I had been eating), but my nausea level only went to a six after eating. It was extremely difficult, though. I wrote "push past the nausea" on my hand to remind myself to give Dr. Di's new plan a chance. I had been on the appetite stimulator for three days when I woke up hungry. It wasn't an extreme hunger, but it made eating a little bit easier. About a week later, I made a life-changing discovery. I still remember sitting at our school room table reading biology. The module was all about the functions of a cell. Any science minded person will tell you that there are a ridiculous amount of functions that a cell can do. I was eating breakfast (I also learned that staying busy and distracted while eating helped) while going to over all of the functions of a cell with my mom. It took at least 45 minutes, and I noticed that I felt different after I finished breakfast 45 minutes later. My nausea level had stayed at four! I tested this new theory for the rest of the day, and each time it worked. By eating slowly, we're talking SUPER slow...like 45-60 minutes for one meal, I was able to keep that nausea level from rising! I felt like I was on top of the world! My grandpa was just as elated. He kept saying, "if that level isn't going up, the only place it has to go is down." I easily got bored just sitting at the table, waiting several minutes, and the taking ONE bite so I did school, knitted, read, and sewed at the dining room table. It was weird, but at this point I didn't care what was considered "normal.". Just three days after I discovered this trick, my nausea level dropped to a three. I was able to eat more AND lower the nausea level at the same time. We joyously canceled the November 7th appointment in Iowa City. My mom wanted to have an appointment there as a back-up so the appointment was rescheduled to November 28. I was so relieved and happy to feel better. As far as pain from my incisions, I was doing great. I was taking less Tylenol, except for when I stretched and laughed at the same time at my friend Elizabeth's birthday party. I pulled my top incision so badly that I thought I had ripped it open. Tylenol and ice helped me get back on track.

I finished October by creating an original Halloween costume: Somebody-Who-Is-Having-Their-Gall-Bladder-Removed. The surgical mask and booties really completed the look!
 I was looking forward to November. I knew that my nausea level would drop to a two, then a one, and then it wouldn't even be there anymore. I looked forward to that first day of having no nausea, but I had no idea what I would have to wait even longer than I expected.