My name is Andrew, “Andy,” and I have lived with short bowel syndrome for my entire life. I am 26 years old, and I live in Lincoln, Nebraska. I was born in 1986 to Leo and Barbara. At 38 weeks, my mother discovered I had stopped moving and went to see her OB/GYN. After that appointment, my life began.
There was something wrong. Surgeons at the time could not determine what. After some thinking, the surgeon who was on my case did exploratory surgery and discovered that I had three knots called volvuluses in my small intestine. The surgeon decided to take out the dead small bowel and reconnect the remaining living parts, for a total of 10.2 cm, or 4 in. A normal 40-week infant should have 150-300 cm of small intestine.
My parents were told I had 24 hours, they should make funeral arrangements, and I was baptized immediately. After the small bowel resection and a confirmed diagnosis of one of the worst cases of SBS ever seen at the time, I was started on total parenteral nutrition and enteral feeding to help deliver supplemental nutrition because of the degree of malnourishment, as a result of the small bowel only being 10.2 cm.
We moved to Lincoln, Nebraska from Columbia, Missouri in 1989. When I was starting to once again fail in health, we came to Nebraska to find a gastroenterologist. Throughout my school years, I struggled because I would go in and out of the hospitals or be sick on a frequent basis. My classmates had an idea of what was wrong with me, but they really didn’t know what SBS entailed, which made it difficult to fit in.
I was able to play some sports—soccer, t-ball and baseball, and eventually when I got to high school, I ran a year of cross-country. Then, I called it quits on my sports career, knowing it probably didn't do my body any favors by burning off the much-needed calories. I often struggled in school. I found it difficult, so I took advantage of the resources made available to me. I graduated high school in 2005 and got accepted into nursing school. After two years of nursing, emergency medicine and surgical technology courses, I settled on a business degree and started thinking about where I wanted to go next.
Today, I am a college graduate, and an entrepreneur who has started his own business. There is hope! I knew a lot about short bowel syndrome. In fact, I was interviewed several times about the condition SBS and my personal experiences before the idea sparked in my head to create a foundation for the patients and caregivers of SBS. The Short Bowel Syndrome Foundation was established to help educate, support and advocate for those with short bowel syndrome. Our vision and mission is to empower patients to live fuller lives, creating a lifeline of hope. In addition to providing education and support materials and inspiring those who come to the site, there are our social networks for guidance and knowledge, so that management of care becomes easier.
That is a little about myself, and I am always willing to share more if asked. Short bowel syndrome is a very serious condition, but it is one that can be well managed if done correctly and with frequent follow-ups with your gastroenterologist. There is no reason why you could not live a pretty normal life!