Garrettsville – It’s fairly common for someone to ride their bicycle across the country. It’s quite another when that someone is a survivor of inflammatory bowel disease, ulcerative colitis and colon cancer… with an ilieostomy.An ostomy is a surgically created opening from an internal organ such as the intestines or ureters to an external point on the body, usually in the abdomen, so that diseased or damaged portions of the patients’ organ can be removed or treated for disease. The piece that is created to pass through from inside the body to outside is called a stoma. Bodily excretions such as stool, mucus and urine pass through the stoma into a special bag on the outside of the body, which the wearer empties on a regular basis.Bob Baker is taking a break as a self-employed builder to bicycle across the country for a cause – to raise awareness and funds for the treatment and eventual cure of colon-related diseases; and to combat the stigma associated with ostomies. He and his traveling companions — retired engineer Andre Simonpietri and retired urologist Herb Schettler — cycled through Garrettsville last week, just 11 days into their 4,000-mile tour, which started in Stamford, CT on April 16. They’re riding about 60 miles per day over the next three months, noting Bob’s 50th birthday in June, before reaching the West Coast in Seattle, WA. Bob was 40 when he was diagnosed with colon cancer… and that was after 27 years with inflammatory bowel disease and ulcerative colitis, which plagued him with bloody diarrhea and other flu-like symptoms since being struck with it at age 15. He was forced to finish high school by phone – one year late – and dropped out of college because he couldn’t sit through class.“It was like having the flu for 2,000 days straight,” Baker recalls. “I could not control my bowels and my immune system was shot. I lived moment-to-moment in survival mode, always worrying about where’s the nearest bathroom. Up until that time, I had been athletic, popular and active. But that all changed the first day I filled the toilet with blood.”But Baker dealt with it for nearly three decades before being diagnosed with colon cancer and being faced with a choice: battle with Stage II colon cancer AND inflammatory bowel disease OR get the diseased tissue (thus the disease) surgically removed. This would entail getting an ilieostomy and wearing a bag daily to remove bodily waste.Ostomies are used in the treatment of diseases of the intestines and/or bladder, and are most commonly used to treat inflammatory bowel diseases such as Crohns/Colitis as well as certain cancers. The three most common types of ostomy are:Colostomy – a portion of the large intestine is removed or re-routed temporarily or permanently.Ileostomy – a portion of the small intestine is removed or re-routed temporarily or permanently.Urostomy – urine is diverted from the kidneys, often to bypass a diseased or removed bladder.Baker is unabashed when it comes to straight talk about bathroom issues. In fact, he and the 1.5 million people with inflammatory bowel have developed a sense of humor about their very serious health issues.The United Ostomy Association of America (UOAA) produces an annual “Colondar,” a calendar featuring young colon cancer survivors as models. Baker — the 2006 Great Comeback Award-Winner and UOAA Vice President — appears in the 2007 Colondar as “Mr. December” and on the cover (www.colonclub.com/colondar.html).The photos of beautiful, happy, vivacious — but scarred — patients serve to increase awareness of the good life and the absence of limitations for many who live with an ostomy. They also stave off the stigma often associated with ostomy, and raises funds for UOAA’s educational and awareness programs. And although its cause is unknown, there is a hereditary component to the disease… Now Baker’s 19-year-old son has been diagnosed with inflammatory bowel disease.Baker had avoided an ostomy at all costs until a slight shift in his thinking allowed him to realize the dreaded procedure was actually his ticket to freedom to enjoy the rest of his life in ways he had been unable to before. His ileostomy offered him convenience and control, opening back up the ability to leave the house, go out, ski, bicycle, travel, and live an otherwise full and active lifestyle. “It opened up a whole new world for me,” including the opportunity to lobby Congress and speak to former President George W. Bush, Baker says. His Phoenix Cycle Tour is a celebration of his new life, thanks to the ileostomy he got eight years ago. (The colorful Phoenix is a mythical immortal bird which rises up — reborn — from the ashes of death and destruction.) This tour follows a 2010 UOAA/Colon Club-sponsored ride called “Get Your Guts in Gear,” from Manhattan to Saratoga Springs, NY, in which Baker raised $11,000. His goal by the end of his Phoenix Cycle Tour is to raise $100,000 for the cause. Along the way, he will meet with members of 320 support groups scattered across the country, and hopefully gain both local and national awareness.“I had forgotten what it feels like to feel good,” Baker says of his former life. “Getting an ilieostomy was miraculous for me. I am the poster boy for this cause. This ride is a big celebration.”
