Ok, newest update.
I went for my apt at 2:45 only to be told I didn't have one!!!!Except that I had written it down and had the name of his assistant too! Am I halucinating???? Must be the stress!
He took me anyway. He is much better than his predecessor who he recently replaced as chief of digestive surgery in Pais. Not quite as condecending either.
Well it was more like a first date than an apt.
He told me his backgroun and I told him mine...we checked each other out and decided if we wanted to see each other again or not
He know of the K pouch and has actually done a few: average one every year or two! Not the expert but at least he knows what they are all about and what they look liken how they function etc..
I explained the present problem and asked if he would be a "partner" with Dr. C on this.
I asked for an ultrasound and a contrast dye scope but he refused all util he recieves the op-report from Dr. C., something that I should have brought with me but forgot!
I have written to the office and am waiting for it by email but they seem to be away there.
I told him that it was pointless to wait for a file before preforming the exams, that I am still hooked up and it is getting very uncomfortable etc...couldn't care less.
He won't budge without a file. Peaked at my abdomen like at a picture book and said, "yeah, you have had surgery" as if he doubted I had told him the truth!
Then he gave me a bill for 150€ and said that as soon as I had translated the report, to forward it and he would book xray!
I am going nowhere fast and paying for the priveledge!
Sharon

not to sure what to say Sharon...It wasn't the start of treatment you hoped for but maybe once he gets the materials he has asked for...treatment will start rolling along they way you want it to.

Ok, A lttle bit of progress here:
I got eh head of radiology to accept to do a scan of the pouch with contrast tomorrow...at least we willsee what is going on inside and have a better idea of where to go from here.
Any progress is better than stagnation.
I am waitning for the op report to arrive from Toronto, to translate it and send it off to the French guy...he wouldn't prescribe anything until he got it...now atleast I can jump the gun a bit and move forward....I hate waisting time...here, everything closes for 10 days at Christmas and you get sutck waiting until 5 Jan for them to make u an apt.
I have no idea what he will find..am hoping for a miracle because this is starting to get really old!
Spent the weekend with the grandkids, felt good!
I feel like the proverbial lady in waiting!
Sharon

It must be terrible to be in overdrive and everyone else is acting like there is all the time in the world. Of course, they do not have to live in your body every day! But, thank goodness you have the resources to at least make something happen, so you can feel that there is some sort of forward movement happening. Fingers crossed here for you.

Jan

I just have one question. Is there no surgeon in France that has experience with the K-pouch? Why does he insist on working with Dr Cohen? Is it for your benefit (i.e continuity of care) or is it because his background isn't as strong?

Oh yeah, isn't health care free over there?

Et puis, je vous souhaite une bonne santé

I am overwhelemed by the kindness and generosity of all of your posts!
Here is the update of the week.
Through a lot of very nice people I managed to get my op reports faxed to Paris and then scanned and emailed to me last night. I am still in the long and laborious job of trnslating them!!! It will be done for tomorrow. In the meantime.......

I did some rather sauve finagling here and got an old friend who is head of radiology at my old hopital to order up and do a C.T. scan on me today. He did it with contrast both with and without the tube in.
Oufff! I got the tube out with no problem...of course....Sweat bullit in the scan out of fear of not being able to put it back in! Went in strait the first time!
Of course it did....did it the last time too in Toronto after the previous incident....and stayed great for over 10 days....
I rehooked immediatedly after the test..fear is overwhelming my curious nature.
Results: ok, no hernia visible. No prolapse either. What we can't tell is what is at the end of the valve. Obviously with the tube in it is strait without any twists but it does touch the wall of the pouch. We see something inside of the valve on the left, that looks like a kink or elbow but it just may be the "continent valve" part of the valve...I have never really seen it from the inside before!
When the tube is out we see the end of the valve, not touching the inside wall but very close to it, around half an inch, and on the left interior side we see that elbow or flap or wrinkle or whatever you want to call it, I suspect that it is the valve part of the stoma and that it looks normal. There are no visible twists or turns but I have been on strait drain for 12 days.
I am finsihing up the translation and will send them off, at the same time they are sending me a CD of the CT scan to send off to Dr. C so that he can see it himself and interpret it his own way being that it is his work inside and he should recognize it.
The french guy is scared of doing anything without an instruction booklet on me and I don't really blame him. I am not the easiest case on the planet!
So, now it is a game of patience, gettingin tosee him, getting any other tests done and being told what is going on in there.
For the moment I am still on strait using the faceplate and belt, although the shoelace thing sounds so much "lighter" and easier. I use a clamp and plug just because I am that paranoid of squirting and leaking all over my grandkids.
Wouldn't really do much good if I hosed down my hubby either!
the stoma is starting to get sore with all of this but looks healthy....
So guys....thanks for the suport ( a girl always could use a little support!) and I will keep posting as I know more
Sharon

I communicated the results of the Catscan to Dr. C and he suggested that I should try clamping for 6 hours at a time to Stretch the pouch. I don't know if it the barium swallow but the whole system hurts, is crampy and bloated...I feel like I am backing up...nothing coming down and through the pouch even after 5 or 6 hours...
That just ended with running bowels and more cramps and pain and mega bloating...
I am not used to this.... Do you have the same problem with Barium???Is this normal? I can not remember...Making the clamping really difficult to hold more than 3 or 4 hours...I am pushing it as far as possible but am really uncomfortable...
Is it the excessive clamping?
Let me know if you have the same problems..
Sharon