Inside intestines with stool blocking water from getting to garden inside of intestines

Ask the Advocates: DIOS

Last updated: May 2022

Distal intestinal obstruction syndrome (DIOS) is a condition where the small intestines get blocked by thickened stool. About 15 percent of people with cystic fibrosis (CF) experience DIOS. It happens because of poor nutrient absorption and reduced flow through the intestines.1,2

One of our advocates, Cheriz, was able to share her personal experience with DIOS and how it has evolved from birth to present-day.

Response from Cheriz

I was born 12 weeks premature with an intestinal blockage. I was life flighted and had two life-saving surgeries to remove 10% of my intestines. Since birth I have had many intestinal obstructions, some resolved at home with medication, while others were more serious and needed hospitalization.

Growing up with DIOS

I’ve had a total of four surgeries for intestinal blockages and I currently only have 75% of my intestines. It can be hard to know how to treat it. But, growing up I learned to be very mindful of whether I felt constipated or was having any stomachaches.

We had over-the-counter prescriptions that my doctor recommended, as well as pushing fluids, and watching for any serious complications.

Recognizing the signs

A couple of the surgeries were life-threatening and scary, but I learned from them. I started to recognize the difference between a stomachache and intestinal blockage pain.

By recognizing signs early, sometimes I could resolve it before it became too serious. Thankfully, as I get older my intestines have not been much of an issue anymore (knock on some wood).

Symptoms and treatment

Symptoms of DIOS include abdominal pain and cramping. Other complications may show similar symptoms, such as constipation and appendicitis. Treatment usually involves fluids and laxatives. Surgery is usually not needed, but as Cheriz shared can and does happen.1,2

As the average age of CF patients increases, it is increasingly important to be able to identify and manage DIOS and the other GI complications of CF.3

Have you or a loved one experienced DIOS or any other GI complications? Please share with us in the comments below!

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