'There are things that you believe and things that are true'...my favorite quote...Tell it to your k pouch doc across the street...he dosn't have to believe in living colars but the fact is that they exisit so he has to deal with it!
Valves can hurt, pain shouldn't be normal but being that yours is so young and new then it might not be totally abnormal...not being able to intubate is NOT normal though...try putting the tube in while laying down (in the tub is easiest if you have one)...I have never heard of adhesions IN the pouch/Valve, not sure if it is possible or not...the small bowel is a totally different tissue fiber than the abdominal cavity but I do not know if it grows adhesions (why not????)...anything is possible with us.
The best thing that your k pouch doc can do is a opacification...and this is the important part: have him drip/squirt only a couple of drops of opac at a time into the valve and film it until it is full...then he can push the tube in a squirt into the pouch...make sure that he takes pictures with you laying flat, on your right side, on your left side and STANDING UP.
It makes a very big difference....
They did not see my problem until Dr C told me to have the radiologist do it that way...low and behold we saw the part of the valve that had pulled out and the part that was being hit regularly by my tube and causing a dent in the valve wall...
You need an open minded and ingenous radiologist to get the right pictures.
Sharon