Posted: 8/22/06
'Tour de Guts' takes intestinal fortitude to raise awareness for IBD
by Terry Lehrke
Staff Writer
Morrison County Record
Bringing awareness to a disease such as Inflammatory Bowel Disease (IBD) probably isn't a lot of fun-unless you are Sam and Laura Kirstein.
"There's nothing sexy about the whole deal. When we were deciding how to present this we thought, 'Let's make it fun and empowering, something conquerable,'" said Laura.
An across the country bicycle ride, planned from their very first date four years ago, is in full swing.
The couple, both diagnosed with IBD in their college years, Sam with ulcerative colitis and Laura with Crohn's disease, are 20 year veterans living with the disease. Their goal is to raise $25,000 to go toward research and to raise awareness of the fact that, while not a pleasant affliction, IBD is controllable and those diagnosed can lead active and fulfilling lives.
"It was pretty freaky to find out," said Laura, a track and cross country runner in her college days. "At first I thought it was the mega vitamins that our coach gave us that brought on the symptoms. I did some research on my symptoms and at first thought I had colon cancer," she remembered. Luckily her coach had a brother who had IBD and was able to help her find the help she needed.
She missed a lot of classes being ill and going through the various testing that was required, including a colonoscopy.
According to the Crohn's and Colitis Foundation of America website (www.ccfa.org) Crohn's Disease symptoms, ranging from mild to severe, include persistent diarrhea, crampy abdominal pain, fever, and, at times, rectal bleeding, along with loss of appetite, and as a by-product, fatigue.
Although Crohn's is a chronic disease, patients go through flare-ups that are followed by times of remission-periods in which symptoms disappear or decrease and good health returns. In general, though, people with Crohn's disease lead full, active, and productive lives.
Currently in remission, Laura manages her illness with medication and being very strict about her diet. On this journey, she has her arsenal of medication with her.
Sam, also an athlete, was diagnosed with ulcerative colitis when he was in college. His disease is a chronic disease of the colon, or large intestine. The disease is marked by inflammation and ulceration of the colon's innermost lining. Tiny open sores, or ulcers, form on the surface of the lining, where they bleed and produce pus and mucus causing symptoms such as diarrhea (sometimes bloody) and often crampy abdominal pain. He too feared colon cancer before he was diagnosed.
Sam, not finding significant relief from medication, opted for a surgery called ileoanal anastomosis 20 years ago. This is a two-part surgery where the diseased colon and rectum are removed and a pouch is created from the small intestine. This pouch serves as a replacement colon. The surgery has proven to be a very effective long-term solution. He is no longer on medication, but does watch his diet.
For over a year and a half the couple has taken steps to make this cross-country ride a reality. They've saved money for the three-month leave of absence from their careers, trained extensively, and of course, planned their route.
July 16 the Minneapolis couple left Seattle, WA and, biking though 15 states, plan to end their journey Sept. 18 in Portland, ME. Their website, www.tourdeguts.org gives a detailed account of their route. Aug. 14 in Parker's Prairie marked the half-way point as far as the miles go. They'd been through mountains and prairies so far, and noted that they would be going through the more populated states during the second half of their journey. In each state advocates assist them in their efforts to raise dollars and awareness.
Speaking for the million people diagnosed with the disease, "We know people with the disease feel isolated and alone," said Sam. "We want them to know they are not alone and that with proper medications and treatment they can live full lives."
In each town they stop in they find a local library to post info to their website, email family and friends, recharge their cell phones, and share their message. Often they set up camp, butsometimes stay in a hotel. They start out early in the morning and end their day relatively early to avoid any heat.
At this juncture in their ride they were glad to say they were two days ahead of schedule, hopefully giving them some leisure time, but maybe just giving them a headstart on unforeseen delays.
Sam pointed out other diseases have celebrities bringing them public attention-cancer has Lance Armstrong and Parkinson's has Michael J. Fox. Perhaps because it's not very macho or because it's a disease not likely to enter polite conversation, "no celebrities or local athletes have come forward to become a spokesperson for IBD," said Sam.
It is this couple's dream, that by providing living proof that the disease can be dealt with, and life can be lived fully, that national awareness and attention will be focused on IBD, and with it bring hope to those afflicted, through their "Tour de Guts."
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