Distal Intestinal Obstruction Syndrome in children

What is Distal Intestinal Obstruction Syndrome?

Distal intestinal obstruction syndrome, also called DIOS, is a problem with the bowel, or intestine. Food and mucus may partly block your child’s intestine and cause pain. About 1 out of every 10 to 20 people with cystic fibrosis get DIOS.

What are the signs and symptoms of DIOS?

If your child has DIOS, they may have stomach aches or pain around the belly button, or lower down. Your child may have cramps. You child may not feel as hungry as they usually do. Or your child may feel full sooner after eating. If your child’s DIOS is really bad, they may throw up and have a lot of pain. Your child’s stool may be very watery. If this happens, go to the emergency department of the hospital closest to you for treatment. This hospital can call your CF doctor/clinic for advice.

What causes DIOS?

DIOS is caused by food or mucus sticking to the intestine. Not giving your child their enzymes when they are supposed to take them may cause DIOS, but we do not know this for sure. Your child can still get DIOS when they take the enzymes properly. Some people with cystic fibrosis get DIOS more often than others.

How will you know if your child has DIOS?

There are many different causes for stomach aches or pains around the belly button. Only a doctor can tell you if your child has DIOS. The doctor will feel around your child’s stomach and the area around it. If the doctor thinks that your child may have DIOS, he or she will take an x-ray of your child’s intestines.

Can your child's DIOS be treated?

Yes. If your child’s DIOS is very bad, then your child will have to drink 4 to 8 litres of a special liquid called ‘golytely’ over a 4 to 8 hour period. Because golytely is very salty, your child may not be able to drink it all. If your child cannot drink all the golytely, they can have a tube put through the nose into the stomach. This tube is called a nasogastric, or NG, tube. Your child will then get the golytely through the tube.

Usually your child will have this treatment during the day in hospital. If your child has had golytely before, they can drink it at home instead of in the hospital.

If the intestine is not blocked too badly, your child may only need to take mineral oil or lactulose. These are medications that help move food through your intestine. The doctor or nurse in the cystic fibrosis clinic will tell you what is most appropriate for your child.

Can you stop DIOS?

If your child has had DIOS before, he or she likely knows what it feels like and when it is starting. When your child feels DIOS starting he or she can take mineral oil. The doctor or nurse in the cystic fibrosis clinic will tell you how much mineral oil your child should take. Your child must also drink 6 to 8 glasses of water a day. Drinking lots of water is very important.

What to do if you think your child has DIOS

If you have a pain in the stomach or the area around it that you think might be DIOS, call your CF clinic immediately.

This information is published by CF Canada on behalf of cystic fibrosis dieticians across Canada.