Early on in my recovery, my nurse, Donna, kept telling me about another patient that she wanted to put me in contact with. His history of Crohn's disease, Short Bowel Syndrome and TPN were similar to mine but we also were about the same age, each have twin brothers that are disease free and as a bonus, we live near each other. While in the hospital my brother, Ron, had done some research and found the Oley Foundation and the help they provide to those on TPN and Enteral Nutrition, But in both cases, I was not open to the help they could provide. Several months after being home, I finally picked up the phone to call Dave, the patient Donna had recommended I speak with. I learned that he had had surgery 15+ years ago leaving him with SBS and TPN for life also, unlike me he still has his colon though. He was the first person that I had spoken to that understood what had happened to me. I realized that I was not alone in the new journey I was on. I learned that he was training to run a 1/2 marathon later that summer for Team Challenge to raise money for the Crohn's and Colitis Foundation. I couldn't believe what I was hearing...you could still lead a normal life with SBS and TPN! He was the positive force that I could relate to!
I had many cheerleaders in my court, Mike, my parents, in-laws, family and many friends offering support and encouragement every day. But they didn't understand what I was going through from a patient perspective. Dave was able to offer advice and encouragement from being a patient. He had been diagnosed about the same age I was and had surgery in 1995 resulting in SBS and had been on TPN every since. He no longer needs TPN daily, can eat orally and also infuses additional IV fluids for hydration. We hit it off instantly and have been friends ever since.
He was in the midst of training for a Team Challenge 1/2 marathon in Boston with his wife and daughter taking place in August 2010. I was speechless when he asked if he could "honor" me by wearing my name on his bib during the race and run for me and a few other of his friends with SBS or Crohn's.. I had never had anyone do something like that for me before. He also gave me a Team Challenge shirt with "Honoree" on the back! This would be his first race and marathon that he ever attempted! All 3 finished, Dave and his daughter crossed the finish line together.
Since then they have completed 2 additional Team Challenge 1/2 marathons in Las Vegas. In November 2013 I was fortunate enough to accompany my sister, Kathy, to Las Vegas so she could also complete her 2nd half marathon for Team Challenge in my honor. She had also completed the race in 2011. It was an awesome and inspiring weekend to spend with Kathy, Dave and his family to raise money for a CCFA!
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| Me, Dave, his wife & Kathy after the Pasta dinner the night before the race. |
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| My Shirt, I have worn it for all the races even if only there in spirit! |
More importantly Dave and I have been talking for the last several years of starting a support group for those with SBS and we finally are doing it. Our first meeting is schedule for April 26th from 1-3pm in the Cincinnati area. We hope we can help others like us to not feel alone. So if you know of anyone that would like to attend, here's a link to the information. We would love to meet others! If you have any questions or would like to attend please email me at mguinigundo@gmail.com
https://www.facebook.com/events/471671809625884/?ref_dashboard_filter=upcoming
