Impact of Gastroparesis and Intestinal Pseudo-Obstruction

Approximately 5 million people in the United States, including children, suffer from gastroparesis (GP) and/or chronic intestinal pseudo-obstruction (CIP). These conditions prevent food from moving through the digestive tract. This results in nausea, vomiting, early satiety, malnutrition, abdominal pain, bloating, and dehydration. Many people are unable to eat at all and must rely on tube feedings directly into the intestine or IV nutrition (TPN) in order to sustain life. Complications of IV nutrition include sepsis (infection of the bloodstream), loss of venous access, blood clots, liver failure, and death. Tube feedings may result in bowel obstructions and infections. They are rarely an option in CIP and often not effective in GP.

Treatment options are limited, ineffective, and there is no cure. Medical options include drugs aimed at reducing symptoms, but not treating the underlying cause. They are rarely effective since they do not address the actual problem. Drugs once available to accelerate gastric and small bowel emptying have been pulled from the market by the FDA or not approved for use in the U.S. in spite of years of successful research studies. Zelnorm, an effective drug for CIP, was pulled from the market in 2005. Over 900,000 people benefited from its use. Appoximately 0.1% of those showed some signs of cardiac arrhythmias as compared to Ritalin in which 3% of people react in this way. Of that 0.1%, most had other health issues that could have contributed. There are currently only 42 people in the U.S. taking Zelnorm through an extremely limited access program.

Domperidone, another motility medication, was studied in the US for years and never approved despite the fact that there were NO deaths associated with it. It is still the preferred drug by most GI motility doctors in the U.S. to treat GP, but can only be obtained from other countries.

The impact on life is drastic as many patients become disabled, homebound, and are frequently hospitalized. Social life is limited as most functions revolve around food. In some instances, these conditions lead to the need for a multi-visceral (5 organ) transplant at a cost of over $1,000,000. This results in life long medication, risk of rejection, and a weakened immune system putting patients at high risk for fatal infections and illnesses.

Not only do GP/CIP impact physical and social life, but have a profound impact on the financial aspect as well. TPNcosts up to $6,000-$10,000 per week and is often not covered by insurance companies although it is a life-sustaining treatment. Tube feedings and supplies can cost up to $700-$1,000/month and often not covered by insurance companies because they are considered food. However, they are crucial to the maintenance of health and life in people who cannot eat orally.