May 05, 2011
Love this site! go to www.ostomyadventuregroup.com for more info.
The OAG Mission,
The Ostomy Adventure Group (OAG) creates an environment whereby person’s with ostomies do not merely cope with their ostomy but learn to live exciting, fulfilling and active lifestyles. Living with an ostomy is a daunting task for anyone to adjust to and the first step to having a better life is through self-acceptance. The realization that the ostomy is a permanent part of your life is a difficult one to accept, and one that takes time. However, OAG believes participation in group activities with fellow ostomates will build self-awareness and confidence in future social outings. ??The OAG encourages spouses, significant others, friends and family members to participate in and attend all events. This further creates an environment whereby a person having an ostomy will feel more comfortable in discussing the issues and concerns that matter most to them and their loved ones. Most people in the general public have never heard of an ostomy and this lack of knowledge can easily foster a sense of fear, embarrassment and avoidance of certain social events for a person who has an ostomy. It is OAG’s goal to encourage everyone with an ostomy to embrace a healthy, active lifestyle with no fear and more confidence.
Shaughn Thomas, founder of the OAG, was born with an inherited genetic disease called Gardner’s Syndrome, a variant of FAP (familial adenomateous polyposis). This disease is caused by an abnormal function or absence of the tumor supressor gene. There are many different variants, however, most of those effected have numerous benign colon polyps which eventually can turn cancerous, polyps of the stomach, superficial cysts, desmoid tumors, and a predisposition to numerous cancers. He was diagnosed with colon cancer in 1997, and had his large intestine removed the same year. The following year, 1998, Shaughn was diagnosed with his first of currently 11 total desmoid tumors of the abdomen. Since then, he has had over 30 abdominal surgeries, and 3 different ileostomies. His medical history is far too lengthy to list, but if you have any questions, feel free to email him and he will share more of his medical history with you.
Raised in a small town in upstate New York, Shaughn moved to Boston to seek medical treatment at Dana Farber Cancer Institute in 1993 and has been living in the area since. He has been on multiple trial chemotherapies in hopes of finding a drug to treat the rare desmoid tumors that he experiences. When on a clinical trial in 2005, he met his current girlfriend, Kelly, a pediatric oncology nurse at Children’s Hospital Boston. Since then, they have been residing together in Belmont, MA, with their two dogs, Maddox and Chloe.
Shaughn is a 37-year-old architectural project manager in Weymouth, MA. For hobbies he enjoys skiing, fishing, biking, working-out, cooking, and traveling.
Idea for the OAG
In 2004, Shaughn decided that he would like to reach out to others with both his condition, as well as those living with ostomies. He reached out to find his local ostomy support group, The Ostomy Association of Boston. In attending meetings, as a younger man, was disappointed in the showing of young people with ostomies to the group meetings. He felt as though sitting and talking with others who understand you is occasionally beneficial; he wanted more. As an active person, he found it amazing through speaking with others how many misconceptions were out there with regards to what people with ostomies could or could not do. As a result he came up with the idea of a support group that did not simply sit around a table and chat, but rather participate in an activity, whether it be physical such as white water rafting, or going on a scenic apple picking trip. This still gives the members a chance to talk with others who understand what they are experiencing, but in a completely different atmosphere. And so the OAG was started…
