“Going from 10 hours to 8 hours was the largest jump”
Dependent on parenteral support to survive, Mike must connect to infusion equipment for eight hours a day, six days a week. Reducing the complexity – and time spent – for parenteral support enabled this driven college football coach to get back in the game.
Reducing the burden of short bowel syndrome
Mike was hospitalized after experiencing severe stomach pains and bleeding, from what he originally thought was a bad reaction to food. After several days of tests in two different hospitals, doctors discovered that Mike was born with an abnormal cluster of veins in his small bowel, and that cluster had ruptured. He then progressed through a series of surgeries that resulted in removing approximately seven meters of his intestine.
Mike had now become a patient with short bowel syndrome. The remaining eight centimeters of his small intestine were not capable of absorbing the nutrition and fluids Mike needed to live, so he also became dependent on parenteral support to survive. For 12 hours every day, Mike connected to intravenous lines to absorb nutrients and fluids through his blood stream.
“Being tough, being strong. These are decisions that you make.”
A former football player turned collegiate coach, Mike knew about pushing through physical boundaries and dealing with pain. After his surgeries, Mike soon faced the challenge of physical therapy.
“My very first physical therapy appointment was to sit in a chair. Seems simple. Yet, it was one of the most painful things I have ever gone through in my life. It was excruciating.”
Regaining hours in the day
Initially, Mike connected to parenteral support for 12 hours a day. Eventually, he was decreased to 10 hours a day, an improvement, yet the time needed to absorb enough nutrition and fluids required Mike to carry and be connected to a backpack containing total parenteral nutrition (TPN).
“I would have to wear my backpack into the office. At work with a TPN backpack and cords hanging out of everywhere: that doesn’t do much for trying to convince people you are healthy and can do the job.”
For Mike, the biggest impact so far on his daily life came when he reduced time spent on parenteral support from 10 hours to 8 hours. He now gets his parenteral support needs covered while he sleeps, and no longer needs to be connected to a backpack with parenteral support during the day. Mike’s ultimate goal is to be free of parenteral support.
“It is a longshot. If I can’t get free [of parenteral support], it is moving toward it being an afterthought in my life rather than a dominating force in my life. That’s just as important.”
Short bowel syndrome (SBS)
SBS is a life-threatening and complex and severe chronic condition associated with reduced or complete loss of intestinal function. In adults, the main underlying causes of SBS are major intestinal surgery following Crohn’s disease, ischemia, radiation damage or surgery.
It is estimated that 20,000-40,000 people are affected by SBS in the U.S. and Europe. The most severely affected are dependent on daily parenteral support. This requires them to be connected to infusion lines and pumps, which pose significant restrictions on their ability to engage in daily activities.
Sources: Jeppesen P. Expert Opin Orphan Drugs; 1:515-25; Transparency Market Research; Short Bowel Syndrome Market, 2017