I’m Lauren, and I live with Chronic Intestinal Pseudo-Obstruction. What the heck does that mean? Essentially it means that my intestines like to act like they’re obstructed when they’re really not, leading to symptoms similar to a mechanical obstruction (including nausea, vomiting, abdominal pain, abdominal swelling (distention) and constipation.) They don’t like to move food, fluid, or gas through the digestive tract due to a lack of peristalsis. This also leads to inadequate absorption of nutrients from food, which leads to malnourishment and the host of symptoms and complications that can bring about.
Those with CIPO are in the rarer camp of Digestive Tract Paralysis. While a good ol’ Google search will lead you to easily learn that there are fewer than 200,000 cases of Gastroparesis diagnosed in the US per year, a google search on CIPO looks a lot different. There are no easily digestible statistics. According to NORD, around 100 new cases in children are diagnosed per year in the US, but CIPO often goes misdiagnosed or unrecognized.
There are two variations of CIPO, neuropathic, where the nerves cause the lack of peristalsis, and myopathic, where the muscles cause the lack of peristalsis.
I personally live with idiopathic myopathy chronic intestinal pseudo obstruction, I was diagnosed at the age of thirteen through a full thickness biopsy was taken from my small intestine after searching for a diagnosis for about ten years. Though it’s great to have a name to the thing wrecking havoc on your world, like any chronic illness, there is no cure to CIPO. I have found refuge in several medical devices that keep my symptoms at bay, and me out of the hospital for the most part.
What’s in my magic bag of tricks? A central line used for parenteral nutrition- nutrition that bypasses the digestive tract and goes straight to the blood stream, and draining/venting G and J tubes - a G tube goes directly into the stomach, while a J tube goes directly into the Jejunum which is a portion of the small intestine. These three devices have changed my life for the better, but there is no one size fits all regime for those living with CIPO, we are all very different and have different underlying conditions.
In living my life with this disease, I’ve found solace in the support of friends and family when turbulence ensues. I’ve learned that you can find a friend in nearly anyone. And last but not least, I’ve learned that my life passion is to be the person I needed when I was a child going through diagnosis and learning the ropes to the treatments I was put on, most importantly helping others learn that they too can live a full life while on IV nutrition.
For more from Lauren follow along on Instagram: @prettycouchpotato