About Chronic Intestinal Pseudo Obstruction

Everyone reading this has probably had the stomach flu at least once in their lives. Remember what it was like, the nausea, the vomiting, the pain. Imagine what you do; snuggle up next to your puke basin in a position that you've finally found semi comfortable and try your best not to move, because even breathing hurts. Now imagine waking  up like that every single day of your life. This is what patients with Chronic Intestinal Pseudo Obstruction experience.

As per Nationwide Children's Hospital, Chronic Intestinal Pseudo Obstruction is: "a rare disorder of gastrointestinal motility where coordinated contractions (peristalsis) in the intestinal tract become altered and inefficient. When this happens, nutritional requirements cannot be adequately met...In CIP the intestines react as if there is a true mechanical obstruction or blockage. However, when tests are performed, no physical evidence of blockage is found. There is no unique sign or symptom that allows a positive diagnosis of the pseudo-obstruction."

Symptoms of pseudo obstruction can vary from patient to patient in how severe they are and also in how they present themselves. Symptoms include but are not limited to: 

  • nausea
  • vomiting 
  • severe pain 
  • abdominal distention 
  • constipation and or diarrhea 
  • weight loss 
  • early satiety (feeling very full very quickly)   
Diagnosing CIPO can be very difficult. There is no one set test that can verify that you have or do not have the disease. It is usually a diagnosis of exclusion, where a physician runs tests to rule out other problems, such as a physical blockage. However tests such as manometry can be very helpful in making a diagnosis. Let me take a second to describe manometry testing. There are many different styles of manometry tests, that measure motility from esophagus down. I'm going to explain Antroduodenal (AD) Manometry because it is most often used to diagnose CIPO. During AD manometry a probe, probably the size of your ring finger in thickness, is inserted through your nose and all the way into the first part of your small intestine, also called the duodenum. They tell you to breathe and relax while they insert the probe, but you are busy, choking, gagging, and often vomiting the probe back up on it's way down. The test differers from center to center but it can range from 6 hours to 24 hours long, and it's miserable!! 

You'd think that after all this awful testing, that can take months or years to have completed, you'd be able to obtain treatment and a cure. Currently there is NO CURE for a diagnosis of CIPO. Treatment consists of symptom management. In Sara's case symptom management is a daily struggle. It involves multiple medications to keep her nausea in check, multiple medications to attempt to control her pain, a tube in her belly to drain her own digestive fluids (because her body cannot handle them without throwing up), and most importantly a Central Line to provide Total Parenteral Nutrition (TPN), so she can receive everything she needs to stay alive through an IV, since her digestive tract is completely unusable. in extremely severe cases organ transplant can be considered an option. 

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