Distal Intestinal Obstruction Syndrome

[lovemygirl]

Our daughter is 5 yrs old (w/cf) and has always had digestive issues. In fact she was diagnosed with CF because of them. She is on cotazym 8 and at her max. dosage per day.
She often complains of stomach pains either on the sides or behind the belly button. Sometimes the pain is obviously malabsorption but other times I almost wonder if she is faking it for attention. After a long conversation with the dietician she thinks it may be a mild case of DIOS (distal intestinal obstruction syndrome). I have done some reading on it and the sites I read say 1 out of every 10-20 cf patients gets DIOS and I was wondering if anyone on this site has. If you have had it how do you relieve the pain?
Thanks for any tips you can give me.

 

[anonymous]

My daughter has had DIOS several times over the years (starting age 2). If you are actually diagnosed with this then you actually have to get your bowels cleaned out. My daughter was hospitalized each time to clean her out. They give IV fluids to keep you hydrated then she had to drink a huge jug of this stuff called GoLytely (warning - tastes disgusting and many times they have to put a NG tube down the child's nose and pour the Golytely in because many kids will refuse to drink). Over the next several hours they literally sit on the toilet and you would not believe all the stool that comes out of them. I am surprised that they would only "mention" this and not act upon it right away. DIOS left untreated can lead to major bowel obstruction requiring surgical intervention.

 

[anonymous]

My hubby had problems like this too when he was younger, but was never diagnosed with DIOS. He finally started "medicating" himself by altering every other meal with a liquid. i.e. he woudl eat a solid meal (chicken, rice, bread, something to drink...) and then the next meal he would make himself a protein shake or take 2-4 cans of boost (there's the pedi stuff for kids too). He found that altering every other meal like that helped his body normalize with the backed up bowels, he had less stomach aches and was acutally able to take in more food overall throughout the day because he was "regular" and not backed up therefore his stomach wasn't upset.... and it started helping to keep his weight up.... lots of pros to when he started eating this way. In addition to that, the proteins shakes/boost/ensure shakes are aldready broken down proteins and such, therefore the body has to work much LESS (especially important for a CFer) to digest the liquid meals, therefore "reserving" the energy for the solid meals. Mark found that every other meal as a liquid (or semi-liquid) was the best because too much solids backed him up and too much liquid makes it all come out...

It started when he was about 19/20is and has been keeping it up ever since. I don'tk now much about this DIOS, but thought i'd throw the idea out there, maybe it might help if you want to try it...?????

 

[julie]

ok, still chasing behind posts I thought I was logged in for but clearly wasnt-sorry (technology, I take NOOOOOOOoooo accountability) <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

My daughter also had what they believed was DIOS. They filled her up with GO LIGHTLY throughout her night feeding. (She has a g-tube.) The good thing about the g-tube is that she didn't have to drink the solution, they just injected it into her tube. It still was a terrible night and very uncomfortable for her. It did clean her out though.

Maria (mother to Sami, 2 years old, with cf)