DIOS AND CF

J

JennifersHope

New member
Apparently my intestines were jealous of all the attention my lungs get and decided they want in on the CF action........ I was told that I have something called DIOS.. I think it means Distal Intestine obstuction syndrome? I was told that I have this today and that I have some scaring and fibrosis in my colon...

A friend of mine that goes to the same clinic as me saw one of my posts about all the trouble I have been having and she called me and got my CF team involved.. It it wasn't for her, I would still be sitting here in pain on day 22 of being in the hospital....

She had the same symptoms as me to some degree and new I needed some help.. Apparently lots of ppl with CF get these obstuctions and they drink GOlytley and get the same procedure I had done today done... They are confident that is why I wasn't healing so well and are sure that things are going to improve from here.



Anyway, on catscan it shows thickening of the intestines and other things that I have as well.....

Any information or links to websites with information would be greatly appreciated


You guys rock,

Jennifer
 
M

Momtana

New member
Jennifer, it sounds like it was important to get your CF team involved. You have had too many challenges. Hope the tide turns tomorrow.
 
S

Scarlett81

New member
Never heard of it. But I'm going to try to look up some stuff on it. A new "syndrome"-just what you need. On the other hand, sometimes its good to know exactly what is going on, right?
 
D

Debi

New member
Hooray for you and a world of thanks to your friend. Must be a relief to know what's going on, and I'll be looking forward to hearing about how well you're healing from here on out.

Debi
54 w/cf
 
M

Mockingbird

New member
Or miralax. I don't know about any of the other medications, but I know miralax is taken continually to prevent future blockages.
 
J

Jane

Digital opinion leader
When you first posted about this, I looked it up, but it took a while to find it. You have to google DIOS-blockage (or bowel) because just DIOS comes up with all the references to God in spanish. LOL
Here's one link:
<a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Distal_intestinal_obstruction_syndrome
">http://en.wikipedia.org/wiki/D..._obstruction_syndrome
</a>

I'm curious why your CF team wasn't involved from the beginning. Whenever my kids are in the hospital they are under the primary care of the CF service, even if they were admitted for a different reason (sinus, GI etc). All the specialists work with them. It makes sense to have them all work together.

Its a relief to have some answers, even though its another thing to think about. I hope they are able to get you better and HOME soon!
 
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