Most people are aware of intestinal diseases such as Crohn’s disease and ulcerative colitis, but even in the chronic illness community some severe gastrointestinal illnesses are relatively unknown. One of those rare diseases is called Chronic Intestinal Pseudo Obstruction, or CIPO. This disorder is characterized by the impairment of muscle contractions in the intestines which can cause spasms and paralysis of the gastrointestinal tract.
According to the 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 CIPO 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.”
The cause of pseudoobstruction is not definitive.
Some people develop it as infants and others have an onset of the disease later in life, and since little is known about the cause, diagnosis and treatment can be difficult. CIPO can affect any part of the gastrointestinal tract and can cause bacterial overgrowth, malnutrition, and other severe complications. There’s a plethora of possible causes, including problems with nerves, muscles or genetic factors.
CIPO has no cure. Doctors work with patients to manage symptoms and care, especially for their special nutritional needs. Possible treatments for CIPO include antibiotics for bacterial overgrowth, intestinal decompression, anti-nausea medicine, and nutritional support to help prevent vitamin deficiencies and malnutrition. In severe cases surgery may be required, such as ostomy surgery, G or J-tube placement, or intestinal resectioning. The outcome for patients with pseudoobstruction can be vague due to a lack of knowledge about motility disorders in the medical community.
So how does a person live with and manage a gastrointestinal motility disorder?
Meet Sara Gebert, a 21-year-old college student from New Jersey who was diagnosed with CIPO when she was a senior in high-school. Before she was diagnosed, she would vomit as many as 60 times each day and was so weak at times that she couldn’t get out of bed. Because her symptoms were similar to other GI disorders, doctors didn’t diagnosis CIPO for a very long time. She’s been hospitalized numerous times and has had multiple feeding tubes placed, TPN ports, bowel resections, and ostomy surgeries.
Basically, this is what’s going on inside Sara’s body, according to her Instagram:
Sara is one of about 150 people worldwide who are diagnosed with the CIPO annually.
Since CIPO’s resources are limited, Sara and her friend Victoria Linzer decided to create a nonprofit called Sara’s Army to educate others, raise awareness for the disease and help fund medical research. She uses her blog and Facebook page as an open forum to discuss personal experiences with treatments, life with an ostomy, and to support others with mobility disorders in their everyday challenges.
Sara has undergone many treatments, including ileostomy surgery, a jejunal feeding tube and gastrostomy tube, but she’s not embarrassed about her condition. In fact she even went to the beach rockin’ a bikini just to show others that having this illness does not dictate her quality of life.
Living with a chronic illness is no easy feat, and it gets even harder when that illness changes your outer appearance as much as mine has. – Sara Gebert
More research and support is needed for motility disorders, so she’s using her passion for advocacy to give others hope. Sara’s Army sells wristbands and clothing, and donates proceeds from the sales to research and treatment developments for motility disorders. Like these jackets below? You can buy one at Sara’s Army apparel store. Also check out Sara’s Army on Facebook to learn more about CIPO and ways you can help spread awareness.