Greetings. Anyone out there diagnosed with this less-than-pleasant condition? I was dx'd a few months back but probably have had the condition for upwards of 4-5 years.
My symptoms included extreme abdominal distention (though i do not always have this sign when I have a DIOS 'flare-up'), 6-7-8 out of 10 pain that can be described as high pressure and cramping (usually in the middle of my gut and the right side), and periods of no bowel movement for sometimes days at a time (though I have had DIOS flare-ups when i have been going to the bathroom only to find out that the stool had just been going around the stuff that will not move in my colon) and x-ray pics that show an unbelievable amount of stool in the whole of my colon.
anyone willing to share? my health care team informed me that not a lot of the cf community knows about DIOS, as it seems to be something that is popping up more predominately in the cf adult population and because we are know beginning to live longer,....they also said that a treatment protocol is rudimentary at best because 'we just don't know what's going to work for every individual'. this is reasonable but nonetheless frustrating.
thanks so much.
Kristen
My symptoms included extreme abdominal distention (though i do not always have this sign when I have a DIOS 'flare-up'), 6-7-8 out of 10 pain that can be described as high pressure and cramping (usually in the middle of my gut and the right side), and periods of no bowel movement for sometimes days at a time (though I have had DIOS flare-ups when i have been going to the bathroom only to find out that the stool had just been going around the stuff that will not move in my colon) and x-ray pics that show an unbelievable amount of stool in the whole of my colon.
anyone willing to share? my health care team informed me that not a lot of the cf community knows about DIOS, as it seems to be something that is popping up more predominately in the cf adult population and because we are know beginning to live longer,....they also said that a treatment protocol is rudimentary at best because 'we just don't know what's going to work for every individual'. this is reasonable but nonetheless frustrating.
thanks so much.
Kristen