Finally found a surgeon in Australia who'll perform the op, but as my husband and I have lost our jobs in the recession, I can't afford to pay privately, and apparently Medicare don't cover it, I'm really upset, so now its illeo here I come, and I hated it last time I was on the external appliance!!!!

Don't give up the fight Hever...beg for an apt, ask if can do a probono surgery (free/charity etc..) maybe if he does not charge you can get the hospital couverage from you insurance...unemployment is the best oppertunity to get the surgery..you are off and home anyway..some surgeons can be very understanding..
I have a k pouch and when it works I absolutely love it!
Either way...good luck
Sharon

Thanks Sharon for your comments, when I spoke to the surgeons office in Melbourne,I couldn't get past the dragon secretary!!!! on Jan 25th I see my own specialist on the Gold Coast and if he won't agree to a public funded K,and I'm not convinced they can perform it, but apparently Dr. Fazio from the US is doing them in Melbourne, then I give up, anything is better than this constant pain for the last 6 months, since my surgeon inserted implants that were supposedly meant to thicken bms, but have caused terrible pain, he reckons he's disappointed that I feel this way. I think these surgeons should try these procedures on themselves before us, bet they'd have a change of attitude then!!!I think I'll be getting the external appliance sooner rather than later, Heather

Heather,
I understand the pain, trust me...try sending a registered letter to the surgeon with "confidential and personal" writen on the cover..that should get it through dragon lady...
don't give up..even as I am once again going through the pain I wouldn't trade for anything in the world...don't let them steal your dream of good health and freedom...
And yes, I have actually saide to a surgeon,"You first" when he tried to put a tube up my nose and told me that it wouldn't hurt a bit!!!!
Good luck sweetie
Sharon

You know, if you go for an end ileostomy now, you can still have a Kock pouch done at a later date, once you are employed again, if you still want to.

Jan

Thanks for your reply, when I asked my surgeon if I return to an illeo as the J is useless, she said even if I wanted the K pouch it would mean a newly created pouch as they would take the old one away plus the rectum etc, and it would then cause short-gut syndrome, as too much intestine would be used, so I'd suffer more diarrohea than I do now. Also last time I was on the external appliance it was just real watery, the surgeon said it they hadn't performed a loop illeostomy and just left it straight to the bag, it would be even worse, but since I've been reading other peoples experiences on here, one lady said the output with a straight attachement to the external appliance actually gave thicker bms, not as runny as with the loop. Can you please clarify the outcome of a non-looped or looped illeostomy, which one is better, thanks for your help, I've read alot of your comments and you're an angel in disguise!!!!!

It is not the loop vs. straight ileo that makes the difference, but that the loop typically has a shorter length of small bowel that is available for digestion (the ostomy is closer to the stomach). That creates a more fluid output. But, with time, just as with the j-pouch, your body adapts and the small bowel learns to absorb more water.

As to having short bowel syndrome when you scrap the old pouch and build a new one (either a new j-pouch or continent ileostomy), that also is either a misinformation or misunderstanding. Ordinarily, you can have at least two, and perhaps even three pouches created without triggering short bowel syndrome. Of course, if you had some small bowel removed already, that would have an impact.

The typical length of small bowel is about 20 feet. 6-12 inches is used to create a pouch. Short bowel syndrome generally occurs when half or more of your small bowel is removed.

Jan

Thanks Jan for the information, at least I know what to say to the specialist, as they tend to treat you as an idiot half the time without explaining anything, we are just meant to assume they know what is best for us. I have only ever had the one J pouch created and no other use of the small bowel, so I should be able to have a K created, even if the J is taken away, perhaps at a later date when Australia finally catch up with the U.S.!!!Even the UK(yes I'm a Pom)create K pouches, so I don't know what the problem is here in Oz. Here's hoping it'll happen soon!!!!

Heather,
They already do them in Aus, apparently..but it is just recently that they have started...and no, your small bowl is not too short if you loose the pouch..according to my surgeon, Dr. C, in Toronto, when they had to redo my K pouch (a couple of times) and rebuild me a valve twice, I would not suffer from short bowl syndrom even if he had to do it again, that I had more than enough bowl to go around!...and diareah is not a problem with a K pouch, you want the stuff to be liquid so that it can pass through the tube...you just may need to take some dietary suppliments to make sure that you are not suffering from deficiencies...I have a forum contact who just had her k pouch done in England last Nov..and is apparently very happy with it so far...
Either way..much good luck and don't let them intimidate you.
Sharon

Thanks Sharon, I'm gonna bombard my specialist with all this information I've found out on the forum, cos it goes against what she told me last time. I really want the K and I found out its done in Melbourne, trouble is with the recession my husband and I are unemployed, so just have to wait and see if they'll do it on Medicare. My first J was done on Medicare, at the time, health funds wouldn't cover it, time will tell.
give you and update end of January, thanks again for your help, Heather

Dear Sharon, Just saw my specialist and it turned out all the pain I was experiencing was due to implants he had inserted working themselves out and into the back passage before finally exiting. As soon as this happened I had immediate relief, followed by 4 days of bleeing. He nearly passed out when I said I'd been bleeding for 4 days and said I should have seem him immediately. Now I am just waiting to see about returning to the illeo, I still want the K pouch, and as its happening here now I am hopeful, but if the same thing happens with the remaining PTQ implants, then I will have no choice but to have an immediate illeostomy, I couldn't take months of agony again!!! Heather

Sh-t, shi-t, shi-! You should not have had to suffer like that and never, please...never let yourself bleed for that long without consulting your dr!
Negotiate with your medicare mediator..explaining that to have and end ileo and then have to go back in again for a K pouch will cost them twice! Plus mega doses of pain and suffering...if not talk to your banker and see if they can make up a financial arrangement to pay off really, really slowly...because blood surely will cost more than money...sorry but I hate to think of you having useless surgery and suffering when it can be done and overwith in one...and who knows if the k pouch surgeon can or can't save your J pouch..and save you some intestine in the process...we k pouchers love liquid stools..it is our stock and trade of sorts....and besides..the less surgery the better....
Talk to your surgeon about those implants (by the way..what are they? and why are they there? and why are they working their wayt out of you??? Is that normal?)
Sharon

Hi Sharon, thanks for your reply, I wish I could have a K pouch, it would suit me down to the ground, unfortunately the surgeons here are in the backwoods, and when I asked one of them a couple of months ago she hadn't even heard of it, but I proved it by giving them stuff about it I'd printed from the net, they wrote it off as an American thing!!! I know they do them in the UK(where I am from),but its too far lol!!!
The PTQ implants are sillicone pieces put into the sphincter muscle to give you better control of bms. My original specialist just wanted me to go straight to having a sacral nerve implant, but he agreed with this other guy that the PTQ were less invasive and should be tried first. Well I keep rejecting them because of the 4 implants only 2 are left and now all the pain and aching is starting again and I'm back on painkillers so I guess I'm gonna keep expelling them until they are gone.Apparently its rare to expel them but it can happen. The specialist said they would have ripped all the way out of the sphincter and down the back passage until expelled so that explains all the blood and pain. That had all gone so I thought well its fine now so lets stay with the J, but after a rectal exam(which damn well hurt)I had three days of burning and now back to all the rest of throbbing etc. Oh well, it looks like illeostomy here I come, I just want a way out so if thats all thats on offer, I'll have to take it. I know I'll always feel cheated out of the K though, Heather

Just checking in to see what's up and how you are doing...I feel so very bad for you..it just isn't fair!
Never heard of the implants..I had two failed gracillis muscle transplants to rebuild a sphincter but they both snapped...major pain so I know how you feel..the pain was hell...the gracillis cost me/my family a fortune and was a huge sacrific for all of us...I never thought that I could reject both..my k pouch was the end of the line for me...and I got lucky...so maybe you will too...hang in there...
Sharon

Hi Sharon, sounds like you had a TERRIBLE time trying to rebuild your sphincter muscle, and all I want to do is get rid of mine - thats ironic.At least you've come good now, thats the main thing!!! Last night was terrible, didn't sleep, got a massive headache from straining and nothing happening, and I know that means another damn implant is coming out. Throbbing and the same old stuff as last time. Phoned the specialist cos I was really mad, just got the dragon at the desk, who brought my appointment forward to March, not good enough, so I went to my GP who faxed a request for an urgent appointment today, so its fingers crossed.I don't think I'll get a K, as they act dumb when I talk about it so its back to the illeostomy, which when I think back to it, was lovely and pain free, Heather

Que sera sera