No Guts, No Glory

I had three months until law school started, and I was determined to make the best of them. My fiancé was attending ROTC training at Fort Lewis, Washington for the bulk of the summer, so we decided to go away for a long weekend with his family for the 4th of July. We went to the Canaan Valley resort area in West Virginia where his family had rented several houses. 

My UC symptoms were getting too bad to ignore. While we were on vacation I struggled with eating and going to the bathroom often. I was also getting fevers, and then the fevers would break while I was napping, leaving me drenched in sweat. I called my doctor's office only to be told she was in Hawaii on vacation for several weeks. They told me to stop eating dairy, and that was about it. I was barely able to eat, so I was eating popsicles and sitting in the hot tub for long periods of time.

One afternoon we decided to hike to the top of Seneca Rocks, one of my favorite places in WV. It's a 1.3 mile trail to the top, and despite how badly I was feeling I took off with the rest of the family. About halfway up I realized I needed to use the bathroom, and while everyone else headed up I turned and ran back down the trail. Thankfully I made it to the bathroom in time, but it was a huge dose of reality with this chronic disease.

Hiking while sick in WV. Holy steroid face!

My fiancé and I returned home, and we tried to go to the movies before he left. I had a fever and chills and struggled to sit in the air conditioning. Halfway through the movie I went outside in the July sunshine and sat on the curb. I was also struggling to eat, and it felt like my body was rejecting food. He was getting ready to leave for several months, and I was struggling to function.

That summer I was still working at the mall, but then I was offered a job I'd been wanting for years: a resident advisor (RA) at West Virginia's Governor's Honors Academy (GHA). I participated in GHA in 1995, the summer between my junior and senior years of high school. GHA admits (at that time...not sure about currently) 150 excellent students from across the state for a month-long intensive learning and networking experience. It was the first time I had been away from home for any length of time, and I both loved and hated it. My GHA experience was at West Virginia State University in Charleston, WV, but I was selected to be a RA at GHA in Morgantown, in my back yard.

My first visit to DC while at GHA in 1995

The night before my fiance left for Washington he helped me move into the dorm room that would be my home for the month I was at GHA. He left the next morning, and I was grateful for the distraction of GHA from his absence and my health. The first night our resident director, who I knew from his time as a RA when I was a  student, took the RA crew to dinner. I ordered food but was unable to eat. I went into the bathroom and was there so long one of the other RAs came in to check on me. It wasn't starting well.

The next day the RAs were training, and I told our director I wasn't feeling well. While they were off site I moved everything out of my dorm room. When they returned I tearfully told the director I was too sick to be a RA. I hated leaving them in a lurch, but I knew I wouldn't be able to participate. I drove across town to the house I shared with my brother, packed up my cats, and drove 45 minutes to my parents' house. I called my GI doctor who recommended I see a surgeon. They set up that appointment for a few weeks in the future.

My mom went into full mama bear mode when I obviously couldn't take care of myself. After being there for a few days and being unable to eat, my parents drove me to the ER. I was admitted to the hospital. I was given fluids and a blood transfusion when my blood work showed I was extremely anemic. I was in the hospital on clear liquids for a few days, and they determined I should eat something. In the most amazing dietary move ever the hospital brought me tacos to see if I could eat them. Spoiler alert: I could not. I was still very ill, but they released me the day before the appointment with the surgeon.

The next day my parents drove me to the University of Pittsburgh Medical Center to meet with the surgeon. Even though I grew up about an hour and a half from Pittsburgh, it was the "big city" and not a place we visited often. My parents found parking and we began the long trek to the surgeon's office. I was so weak my mom had to get a wheelchair to take me to the appointment. 

The surgeon examined me and said I needed to have surgery as soon as possible to remove my colon. My stomach was distended. My body was rejecting food. He was confident. I, however, informed him I was starting law school in a few weeks, so perhaps I could have surgery over Christmas break? He laughed at me and told me to come back when I was ready.

So we left. I was wheeled back to the car in a wheelchair, and we drove 90 minutes back to my parents' house. I was there a few days, and I was unable to eat at all. My mom bought baby food hoping I could keep something down. I would take a bite, and it felt as if my body was rejecting food. After a few days of this I tearfully told my mom I think we needed to go back to Pittsburgh.

She called the surgeon who planned to admit us. We got to Pittsburgh in the evening, and I was immediately admitted to the hospital in the transplant unit. I'd had a private room at the hospital in Morgantown, so it was an experience to share a room while I was so sick. The nurse, Steve (again I'll never forget some of these names) came in and tried to start an IV. His hands were shaking violently, and he had a pack of cigarettes in the pocket of his scrubs. He tried several times to start the IV and couldn't get it. My mom was furious and demanded someone else come start my IV so Steve could have his smoke break. 

With the IV and fluids started, I settled in for the night before my surgery. I had myriad doctors, nurses and staff in my room to prep me for the big event. One of the staff people was a dietitian who was very handsome. Despite my engaged status my mom was propping me up on my pillow and smoothing my hair when he came in. 

The next morning they came to take me to surgery. As I was in the hallway talking to my parents for the last time before surgery, the hot dietitian walked by and wished me luck. I looked at my mom and said, "He totally wants me." And then they wheeled me back. I'm always on brand. 

I had no idea how sick I actually was. My mom said when my surgeon, Dr. Wolfgang Schraut, walked out after surgery it was like a movie. He told her my colon was "rotten". I remember waking up in recovery and actually feeling better than I had when I went in despite the major surgery. I also immediately felt hungry.

The year 2000 was pre-Google and smart phones, so I had the surgery without really knowing what would be happening. I knew I'd have a temporary illeostomy, but I didn't know what that was. When I got back to my room I looked down to find a clear bag attached to my stomach and a piece of my intestine clearly visible through it. I freaked out. I didn't realize I'd be able to see my intestine. I was attached to several IVs, had a catheter, an NG tube (which I detested) and an ostomy. It's how every 21 year old wants to spend their summer.

I didn't eat for a few days and then was started on clear liquids. My hospital experience was...quite the experience. My roommate was awaiting a liver transplant, and instead of hitting her call button for the nurses she would yell for them and moan loudly. I often wonder if this woman got her new liver and if she's so annoying in real life. At one point I told my mom I'd give her my liver if she'd be quiet and let me sleep. 

I had my first ever sponge baths. The medical assistant insisted on being thorough and said she had to wash my "pocket book", her word for vagina. I've never heard someone call it that before or since, and it still amuses me. 

The doctors wanted me to walk, and I refused to do so as long as I had the NG tube. They warned me that if they took it out and I threw up, they'd have to reinsert it while I was awake. I assured them I wouldn't throw up. They removed the NG tube and catheter, and I was finally mobile.

I'll never forget the first time I went to the bathroom. As I was peeing something came out of my rectum, and I flipped out. I wasn't supposed to be pooping! I had an ostomy! I called for the nurse who assured me it was just blood and mucus left over from the surgery. Gross.

I was on a limited diet, but I was STARVING. I was craving McDonald's chicken nuggets for some odd reason. When the doctors and medical students would do their rounds in the morning I'd tell them they were only welcome if they had chicken nuggets. I was feeling back to myself.

The nurses unhooked my IV and let me have my first shower. My mom went with me into the bathroom to help. I was covered in bruises from IVs and had a line of staples down the middle of my stomach. I'd also lost about 30 pounds. It was probably the first time my mother had seen me naked since childhood, and it was quite a shock. I looked unrecognizable in the mirror from a few weeks before. My mom said, "Oh Honey, you're so skinny. You look awful." It's not funny, but I looked awful, and I started laughing. Then I realized laughing with staples hurts, and I told my mom she couldn't make me laugh anymore.

I was released from the hospital and headed back to my parents' house to recover for a few weeks before I started law school. Having an ileostomy was quite the adventure. Changing it was really challenging at first, and it turns out you can't control a stoma (what the piece of your intestine is called). Sometimes I'd be changing it and start going to the bathroom. It was always a surprise. 

Life with an ileostomy

I was skinny, sore and exhausted, but that didn't matter. Five weeks after surgery, law school awaited.

A few days before starting law school. So skinny.