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.............