Emma Otsuji Pickles: Living A Cappella—Me as an Ostomate

Are you familiar with the word "ostomate"? An ostomate is defined as "a person who has had an opening (stoma = artificial anus or artificial bladder) created in the abdomen for excretion because the digestive tract or ureter was damaged due to illness or accident." The number of ostomates is estimated to be about 220,000, and if those with "temporary stomas" are included, the number is currently said to be about 450,000. However, compared to this number, the current situation of ostomates is hardly known.

In 1997, I entered the Faculty of Law at Keio, where I could study forensic medicine, but I had been suffering from certain symptoms since the time I was immersed in university entrance exams. My waist, which was 60 cm in the morning, would exceed 80 cm after lunch. It was because of gas filling my stomach. During my university years, I wanted to have a job that spanned medicine and law in the future, so after graduating from Keio, I transferred to the Kagoshima University School of Medicine to obtain a medical license. In the days of studying hard to become a forensic pathologist, "that day" suddenly arrived.

When I was a fourth-year medical student, I was struck by terrible abdominal pain at the university after staying up all night. Feeling a sense of crisis, I underwent an examination at the university hospital, and the attending physician looked at the X-ray and shouted, "Emergency hospitalization!" It was acute gastric dilatation plus paralytic ileus of the large intestine. No abnormalities were found even during the hospitalization for testing, and treatment remained symptomatic.

After passing the national exam, I became a long-awaited doctor at age 30 and returned to Tokyo, but my condition progressed during this time as well. Every morning, my body felt heavy like a hangover. One day during my second year of residency, I became unable to even drink water and was hospitalized for testing again in Tokyo, but the name of the disease was not clarified. Although I was blessed with a child at age 33, I developed ileus even after a C-section. The doctor told me, "There must be an underlying congenital disease. You should look for a specialist," but my health management became neglected due to solo parenting. After that, I was repeatedly hospitalized and discharged due to paralytic ileus. However, a definitive diagnosis was not reached.

The turning point came in 2015. At that time, I couldn't eat solid food, and my stomach felt painful after just one plastic bottle of liquid. I found a clinic that provided home visits and stayed alive by receiving high-calorie intravenous infusions every day at home.

One morning, the area where the IV was inserted became swollen and very painful. I collapsed immediately after sending my son to kindergarten and returning home, unable to move due to full-body tremors. Fortuitously, a helper was at home, and I was transported by ambulance. My body temperature at this time was 39.8°C. Vomiting wouldn't stop, I was extremely dehydrated, and my blood pressure was unmeasurable. My heart rate, respiratory rate, and white blood cell count all met the diagnostic criteria for sepsis (SIRS). On the second day of hospitalization, my level of consciousness dropped rapidly. It is fair to say my blood pressure was in a state of "shock" at this time. Seeing me on the verge of death, my mother's parental intuition must have kicked in, and she had me transferred to another hospital on the third day.

A few years later, at age 38, I visited the Cancer Institute Hospital of JFCR, where I had done my initial clinical training. My weight had dropped to 45 kg. As a result of a detailed examination, Dr. Naoki Hiki (currently Professor of Upper Gastrointestinal Surgery at Kitasato University Hospital), a senior Keio University alumni who was then the head of gastric surgery at the hospital and performed the highest number of gastric cancer surgeries in Japan, diagnosed me: "This is a state equivalent to cachexia. Something is definitely wrong." He said my giant stomach had dropped into the pelvic cavity and was not moving at all. The symptoms that had been labeled "no abnormality" in every test until then were identified through the simplest fluoroscopy (a test similar to a barium swallow). Then, through Dr. Hiki's decisive judgment, it was decided that 80% of my stomach would be removed.

As a result of meticulous interviews and other tests, I was diagnosed with "Chronic Idiopathic Pseudo-Obstruction" (CIPO), which has about 1,000 adult patients in Japan. Mine was considered the "gastric type" of CIPO, and guidelines exist overseas under the diagnostic name gastroparesis. It is common among Hispanics, and the fact that I have Hispanic blood contributed to the diagnosis. After the stomach removal, I underwent a detailed pathological examination, which revealed that more than 80% of the interstitial cells of Cajal (the nerve cells that move the stomach) had disappeared.

Having reached a definitive diagnosis, half of my symptoms were alleviated by the gastrectomy, but the pain of bloating in the lower abdomen continued. My large intestine was also not functioning. Dr. Hiki still wanted to "make it possible for me to eat by mouth" and devised various methods together with the doctors at Kitasato Hospital, and in 2019, my first artificial anus (stoma) was created. The word stoma comes from the Latin word for "mouth." It gives a mechanical impression, but the principle is simple.

1. If there is a lesion such as cancer, the intestine from that lesion to the anus is removed. 2. Once removed, the end of the remaining healthy intestine on the mouth side is brought out through the abdomen to create an excretory "anus" on the belly.

Since a stoma does not have an anal sphincter, a bag-like appliance called a "pouch" is attached to the stoma to catch waste. My new life living with this "poop bag" on my lower belly began.

Stool flows into the pouch 24 hours a day at unintended timings. Each time, a lukewarm sensation runs across my belly. Then I rush to the bathroom in a panic. There is a discomfort as if a "new creature" is attached to my stomach. In the hospital room, there were many pamphlets about stoma management and the mindset of an ostomate, but I felt a sense of incongruity with those simulated explanations. When I told this to a WOC nurse (Wound, Ostomy, and Continence Nurse), she gave an unexpected answer. According to her, some patients choose suicide because they cannot accept having a stoma. I couldn't understand taking one's own life when the stoma was created to help them live.

And she said that is largely due to the doctor's explanation of the condition. In the stage before creating a stoma, it is often expressed as "In the worst-case scenario, you will end up with a stoma." That deals a decisive blow to the patient. More than 80% of patients who receive a stoma are over 60, and most cases stem from colorectal cancer. Efforts are made to make the stoma temporary, but there is a possibility it will become a permanent stoma. It is only natural that patients cannot accept such a situation.

Realizing this, I made up my mind. Having a stoma is not the worst thing. A stoma is a badge of honor for having lived. I decided to engage in activities to change the fundamental perception of ostomates by speaking out from the perspective of a single patient.

Another valuable piece of information the WOC nurse taught me was the existence of "ostomate models" overseas. On social media, you can see young ostomates wearing underwear, swimsuits, and denim designed for ostomates. Ordinary people also post photos on social media showing themselves in swimsuits with their pouches out or working out at the gym. I wanted to import this "positive mindset."

So, I first decided to have photos taken of myself with my pouch out, but the biggest hurdle was that transparent pouches are the mainstream in Japan. This allows the intestines and contents to be seen. This is in contrast to overseas, where completely opaque pouches in various colors such as gray, white, and black are the mainstream.

There are 1,800 types of pouches from six manufacturers distributed in Japan, but most are transparent. There is a medical background here: 80% of ostomates are in their 60s or older, and transparent ones are easier for the elderly or caregivers to apply. On the other hand, I also thought that perhaps many ostomates hide the existence of the pouch because it is transparent. Opaque pouches were essential for me to start my ostomate awareness activities. For the photoshoot, with the full cooperation of the WOC nurse, I was able to find a gray pouch from Coloplast, a Danish company that is the only one to offer opaque pouches in Japan.

In the midst of this, I was fortunate to have a program project from NHK to convey the existence of ostomates. The person who made it happen was Reina Miyazaki, a director and a junior from Professor Jiro Tamura's seminar at Keio.

The first problem ostomates struggle with is finding an appliance that fits, which varies slightly depending on body shape and stoma position. If there is a gap between the pouch and the skin, "stool leakage" occurs. For about six months after surgery, I was afraid to go out and stayed home; to prepare for any eventuality, I switched my underwear to black men's underwear that could cover the pouch. I would also become anxious about the smell of the stool in the pouch while out and rush to the bathroom. Another major concern is that gas is discharged unexpectedly and makes a sound because the stoma has no muscle. There was even a time when the sound wouldn't stop while I was watching a play, and I had to rush out of the theater. Life is a struggle with shame. The hardest part is the time spent facing your own stool. With a transparent pouch, the waste is always visible. The stress of seeing what you ate come right back out felt like my self-esteem was being slowly shaved away with sandpaper. The program revealed these realities.

In 2020, while I was being interviewed, I wondered if I could conduct awareness activities together with a sports manufacturer ahead of the Tokyo Paralympics. Ostomates are certified as having a Grade 4 disability or higher (I am Grade 3 due to combination with the primary disease). So, I asked photographer Masatsugu Kobayashi, who had been cooperating for free since before my stoma surgery, and I stood before the camera in a bikini for the first time in my life. Throughout the coverage, Ms. Miyazaki kept saying, "This might be able to break a huge hole in the wall." The coverage lasted six months and was broadcast across multiple programs with expanded time slots.

The biggest surprise was being approached by Coloplast with the offer to "become an ambassador." The challenge I started with the goal of "importing the mindset of overseas ostomates" was fulfilled in an unexpected way, with my 41-year-old self becoming Japan's first ostomate model.

Last August, I had my entire large intestine removed and a small intestine stoma re-created. These days, diversity is loudly proclaimed. Perhaps because I am half-Japanese or because I have a background as a medical professional, I think the concept of diversity was built into me since childhood. However, from the day I received treatment to create a stoma, I came to be categorized into the group called people with disabilities. Among them, I fall into the difficult category of people with invisible disabilities.

However, don't all people called able-bodied also carry some kind of difficulty in living that is close to a disability? I have made it the philosophy of my activities to this day to be a bridge between different distinctions. To that end, I want to continue delivering my unadorned existence to the world with my raw voice (a cappella).

To me, being an ostomate model is one of the new ways of living in diversity—a role model for living a cappella. By advocating this, I hope for a day when, looking back, there will be many ostomate models.