How Losing My Large Intestine Changed My Life

I have no large intestine. A statement that garners attention. I like attention. That statement didn’t necessarily always elicit the type of attention I desired though. My modest Catholic upbringing made bodily functions difficult for me to talk about.

My large intestine burst on July 19, 1999. I rode in a cab to Faulkner Hospital in Jamaica Plains on July 16^th, 1999. I had moved to Jamaica Plains on May 5^th, 1999. I didn’t know many people in town. I asked the cab driver to take me to the nearest hospital. Something they say in the movies. He said, “E.R.?” I said, “Yes,” and wondered how he knew.

I couldn’t stop going to the bathroom. My abdomen was distended. I was in pain. A knife in the stomach kind of pain. What I saw in the toilet looked like pink mucus. As I pressed my feverish head on the cool toilet seat, tired and unable to eat, I imagined wispy, pink jellyfish swirling down the drain.

I had an undiagnosed case of ulcerative colitis. I had no health insurance. I was 26 and still thought I was immortal. I thought my stomach problems would go away. I was living in Boston after getting out of a dangerous relationship in New York City and thought stress or bad living had taken there toll, but I would get better, right? Little did I know that my large intestine was literally becoming mush as I put off my visit to the hospital.

The doctors didn’t know what was wrong with me for the first days. They ran tests. Asked me confusing questions. Confusing because I didn’t know why they cared if I ate anything in the past hours, or if I was pregnant. Confusing because I didn’t know how one answered questions that boiled down to, “We are going to put a camera up your ass, okay?” “Umm, well. Okay.” Confusing because my body was slowly becoming toxic. Toxic Mega-Colon the doctors called it. That sounded remote, implausible, like an imaginary comic book superhero. Unfortunately, it was real.

Faulkner Hospital is a teaching hospital. July is the beginning of the teaching rotation. The residents are fresh and new, all positive characteristics when you are speaking about say produce or sports cars. But when it comes to taking blood or threading a breathing tube through your nose into your stomach, especially when these procedures are done on someone who is becoming toxic and is petrified and confused, these characteristics are bad. Very bad. It took one small female resident numerous tries to take the endless tubes of blood they wanted from me, leaving bruises up and down my arms in her wake. I lost patience for people who say they hate needles that day. I had no choice. She tried inserting an ET tube through my nose, but after I gagged and cried for the third time, they called for a doctor. I remember repeatedly apologizing. I wanted to be a good patient.

My mother, who I hadn’t wanted to worry, showed up at the hospital on day two. She lived on the other side of the state. No more residents were allowed to touch me. Dr. Stanley Ashley told her they should operate. She didn’t understand the severity of my problem. We waited another day. Then my large intestine burst. They rushed me into emergency surgery. After six hours of surgery they removed all of my large intestine and diverted my small intestine into an ostomy bag outside my body. I had a football size wound left on my abdomen covered with gauze and tape that was to heal from the inside out. I woke up in the ICU hooked up to a morphine pump, ostomy bag, antibiotics, EKG’s, a catheter and I felt out of my mind. No, I was out of mind.

I was in the hospital for 26 days on my first stay. My mother was there for 23 of those days. Once, I sent her home when she started sounding as crazy as I felt. I had no privacy in the ICU. Once they removed the catheter, I had to pee in a commode in the middle of the room. There were only partial walls. I had monitors on my body that beeped and fell off throughout the night and day. I felt alien. I wished to feel normal. Although, normal for me had meant in pain. I was bitchy and yelled at my mother. A nurse said, “Perhaps your mother should leave you alone for a while. You seem angrier when she is around.” My mom said, “She can yell at me as much as she wants. Rip my hair out. But I’m not leaving her.” I was so proud of my mother at that moment, I cried for something other than my situation.

From all the antibiotics I was on I developed thrush, a yeast infection of the throat. I didn’t realize I should tell someone that my throat hurt until I could no longer swallow. Pain should be acknowledged. Something I was beginning to learn. I couldn’t eat. I could barely sleep. Every time I would drift off, a new round of prodding residents would appear or a nurse would arrive to change the dressing on my wound. Nurses came and changed my bandage twice a day. With my ostomy bag I had to monitor my diet-nothing with seeds, skin, too fibrous, no raw vegetables, no popcorn. I love popcorn. When I smelled microwave popcorn wafting down the hallway of the hospital, I cried. I was sick of crying. At first, I couldn’t figure out if I could still have sex. I was afraid to leave the hospital. When I left the hospital I was still 5’4″ but only 85lbs.

The next year I would be in and out of hospitals four more times. 69 days spent in hospitals all total. Once for blood clots, once to remove a drain that had snapped off inside me. Then two surgeries to reconstruct my intestines. Before the reconstructive surgeries I was to heal. Nurses came to my family home and changed my bandages and helped me change and care for my ostomy bag. I was so thin I would get out of breathe opening doors. I lost some of my hair because I was malnourished from losing so much weight.

After six months of healing, they were to reconstruct my intestines. They created a J-Pouch (ileal-pouch reconstruction) within me. Basically they took my small intestine and stapled it to my rectum and formed a storage pouch that would act as my large intestine. I imagined my small intestine as a balloon animal. Sometimes this surgery can be done in one shot, but I needed it done in two parts. Dr. Ashley wanted me to be as healthy as possible. Upon waking up, I didn’t know if I would be connected (no ostomy) or not, so I automatically touched my right side and I felt the bag. I was disappointed but had learned to take these things in stride. I sighed deeply and prepared myself for the next hurdle.

I had an ostomy bag for another seven weeks. When I checked myself into Brigham and Women’s Hospital for my last surgery I felt like an old pro. They said I would be there for three days. That meant at least five days for me. I take a little extra time. My mother and sister were with me up until I went into the ER. They handed me off to Dr. Ashley with a smile that belied their fears. I told them not to worry. Funny how they seemed to need more reassurance than I. I guess if I had allowed myself to need it I would have broken down, and that was not an option.

The surgery was a success.

The day after I was discharged from the hospital, I was to be Godmother to Collin, my nephew, at his baptism. I think it was more of a gesture of love than of faith, not having been a practicing Catholic in years. I was still thin and I could tell my family was worried I would faint when I stood before the congregation. I wore a short, baby -doll dress with knee-high stockings because I didn’t want anything tight around my eighteen stitches. I think some people may have thought the outfit was a bit racy for a baptism, but that made me happy because it was nice to feel sexy again. My father kept mistakenly referring to Collin as Colon, which made us all laugh.

I would have another year of relearning my body and doctor’s visits. I needed friends’ pep talks to realize my scars were a story and not ugly or a burden. My system is still much faster than other people’s. I always know where a toilet is and alter my plans accordingly. Some things are still hard to digest and cause me discomfort when I eat them.

When Collin was presented to the church, unlike the other demure parishioners, my family lost it. They cheered and screamed and stomped their feet, modesty be damned. I know they were welcoming my nephew but they were cheering for me. I had made it. We were openly celebrating, even shamelessly rejoicing in the fact that I was standing before them, connected again.

I will always be very aware of my bodily functions and I like the attention my story garners. I don’t think modesty ever became me anyway.

(Look for Part2: Top Ten Things I Learned From Losing My Large Intestine.)