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Gary Woodward and his dream team –Gary Woodward stopped by to visit Dr. Don Schiller, and his assistant Tillie Huber, on a recent trip to Los Angeles. “When I got a BCIR,” says Woodward, “Dr. Schiller became my healer and everlasting friend and Tillie became my provider and fairy godmother.”
Twelve years ago, BCIR ileostomy surgery gave Gary Woodward the freedom and comfort that nothing but ‘life without a bag’ could provide. Yet today, he still nurses a deep concern . . .
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In 1963, at age 15, I was diagnosed with ulcerative colitis – cramping, bloody stools and generally poor health. Six years later, when I was a junior at the University of Hawaii and on holiday at home in Los Angeles, it finally brought me down
Toxic megacolon. I would lose my colon and my rectum and I would wear an appliance to collect stool.
A young surgeon at the small community hospital had read about a Kock pouch procedure, creating an intestinal bladder that served as a small colon. It was an option to the standard Brooke ileostomy and eliminated the need for wearing an appliance. The young surgeon would be performing the surgery for the first time. I said OK.
My poor health delayed the operation for months and when it finally happened, it took seven hours. And that was just Part 1. The procedure took so long, it was divided into two sessions. An internal pouch and a valve were created in Part 1, but the removal of the rectum was delayed. The delay gave me a chance to improve my general health and it gave the young surgeon more time to do more reading – articles by Dr. Nils Kock, the Swedish creator of the innovative pouch.
Part II didn’t happen for six months because of my long and stormy recovery from the post-surgical infections – three weeks in ICU and days on an ice blanket with 105-degree temperature. At no time did the Kock pouch function as intended. So instead of completing the Kock procedure in Part II, the failed valve was removed, along with my rectum, effectively leaving me with the standard Brooke ileostomy.
For the next 24 years, I wore an appliance, relieved at last of pain. But I was stuck with the problems that all Brooke ostomates live with from time to time. Leaks, skin irritations, odor and gastric noise. No matter. I was determined not to let the appliance dictate my lifestyle. I returned to school, surfed Hawaii and the South Pacific, served as crew aboard a 42-foot sailboat to New Zealand. And, I became a certified emergency paramedic in air and ground ambulances.
But not without incident. Once, a trash truck picked up my appliance on the beach while I was surfing (I always took it off and hid it in a towel) and I had to chase the truck to retrieve it. Also, Hawaii’s tropical climate virtually melted the appliance seals at times, causing leaks and embarrassment. As much as I disliked the appliance, it probably saved me once when three punks appeared suddenly from the bushes, obviously intent on mugging me. As one of them started to swing at me, he noticed the bulge beneath my shirt and assumed the appliance was a holstered gun. “He’s got a gun!” he shouted and they scattered quickly.
Actually, I could go a very short time without the appliance because I still had the Kock pouch that collected stool. The Kock valve had failed to keep contents inside the pouch when pressure built, but I could intubate some and, briefly, prevent the ileostomy from emptying constantly into the appliance.
That was my life until 1995, when I saw a Parade magazine ad for the Barnett Continent Intestinal Reservoir (BCIR). Months later, I called Tillie Huber, coordinator for Dr. Donald Schiller’s BCIR program near Los Angeles. That day, Tillie became my provider and fairy godmother and Dr. Schiller became my healer and everlasting friend. I was 45 when Dr. Schiller converted my non-functioning Kock pouch to the life-enhancing BCIR. After 30 years, my life was back to normal
For 12 years now, I have enjoyed the freedom and comfort of the BCIR. Today, at 58, I live happily with my fiancée, Martha “Mel” Lindsey, in New Zealand where we own and operate Kakapu Cottage, a bay-and-bush-view vacation rental in the Bay of Islands. Mel is a certified physician’s assistant from Burbank, CA. Together, we have enjoyed hosting guests from all over the world
Free At Last
People have asked me if I am afraid to be here, so far from a BCIR surgeon. The answer is no. The BCIR has functioned wonderfully (only a couple of bouts with pouchitis) and I have always kept in touch with Tillie and Dr. Schiller. Last year, Mel and I flew back to Hawaii, then on to Los Angeles, where we visited Tillie and Dr. Schiller in their new location at Brotman Medical Center. Just as precaution, Dr. Schiller scoped my pouch. Everything looked great, he said. Good for another 50,000 miles
My biggest concern today is this: Because we BCIR ostomates live normal, healthy lives (without others even being aware of our internal pouches) how is the general public to become aware that such a procedure exists? I am concerned that we may neglect to spread the word about the BCIR so that others might benefit. Imagine if you didn’t know of it, as I didn’t for 24 years.
The BCIR is a wonderful gift from its creator, Dr. William O. Barnett, and the BCIR surgeons who survive him. Let us share our gift with the world.
To contact Gary Woodward or to learn more about BCIR ileostomy surgery, call:
Don J. Schiller, M.D.
Ileostomy Surgery Information Center
Los Angeles, CA
(310) 204-4565 or
Email: dr.schiller@ileostomy-surgery.com
Originally published in Quality of Life Association Horizons: News of a Better Quality of Life
Summer 2006
No. 63
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