Any k or J pouchers in Austrailia need surgery?

We need about 5 to each US state!


But Aussie is cool. I want to move there so you have my vote even though I don't live there My disease prevents me at the moment but if I get a good GI and CIR surgeon I'd be set.

Wow the response was overwhelming hey Sharon.
Thanks for putting it out there though.

Vanessa. We're the last place you want to be. Feel blessed you live in the US. You're more than welcome in our country, don't get me wrong. It's just that finding help for a KPouch/BCIR in this country will be almost impossible.

Don't have a lot of hope left right now with the situation here, to be honest.

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That is why I am trying to help...you guys deserve a good k pouch surgeon with excellent follow up skills.
Sharon

Hi,

Feeling down about how things are going. Went to reply/ask questions to a poster who had responded about having it done in Australia previously, but it was one of the threads that have been deleted unfortunately.

I'm getting the feeling i'm damaged goods and no one will go near me surgically now. Complete opposite of so many positive stories i'd read on these very forums about getting jpouches removed, bcir's and kpouches done, conversions done etc in the USA. Most of those posts have been deleted too. What a shame.
Watching my wife struggle to do everything, while I financially burden her and my kids is not fun. The Jpouch put us into debt.... The leftover Jpouch, the leftover UC(what an awesome cure...not), and stuffed stoma are digging the hole further...
Mabye I should have put this in the rant section..

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adroen, that is too bad. i PM'ed Bill J about our thread:

http://j-pouch.org/eve/forums/...1071921/m/5127006426

and still haven't heard anything back. maybe he is on vacation.

it is a shame that the past posts were probably not backed up either, saved onto a hard drive.

makes me want to just stop posting altogether since it will all be lost soon and people in the future won't be able to benefit from these posts. i don't know of any other forum that has such limited capacity. it's wonderful that this site was created, but since it has grown/is growing, there should be more functionality/space. maybe I will try emailed HealingWell forum, and ask them if they can add a j-pouch section. And also look into other resources to see what can be done.

Hey fq,

Cheers for the reply.

On the KPouch front...... still have no idea what's going on! yayaya..

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Any interested Ausssies for a K pouch surgery?
Am trying to organise something for someone and it would make more medical sense if I can get more than one patient done at a time...it would allow the Austrailian surgeon involved a chance for more experience with the k pouch under surveilance by a medical expert.
If so please post or contact me through PM.
Thanks.
Sharon

Hi Everyone, I am a newby at the k-pouch thing. I live in Sydney, Australia. I had my k-pouch surgery in november last year. My surgeon can claim to having done his first k-pouch and in my opinion very successfully. I'm not sure how much info I can legally give on line in regards to the surgeon responsible. Anyway I have a great Dr in Sydney if anyone is interested.

Hey Wendy. Welcome to the forum. I've got to say, I've nearly fallen off my chair hearing that there is someone in Sydney who can do KPouches. First time i've ever heard of it, and I'm wondering who he/she learnt the procedure through, or if they've just taken surgical notes and/or procedure information and worked it out themselves. Good on them for starting to do them at any rate. You had it done privately I gather? I'm not expecting you to say publicy names or anything of course unless you want to.

Thanks for chiming in,
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Hey Wendy. I hope you come back and reply, or reply to the PM I sent you. It was kind of big news, thus my responses. I won't be offended if you don't want to talk about it and just want info on your problem here with all these knowledgable people. I'd definately understand why you'd feel that way if you did feel that way. I'm not going to keep going on about who the Sydney surgeon is, etc etc. Just letting you know in case you end up checking back here in the future.

Stay cool,
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Hi Ad, well here I am at last. I have just been talking to my surgeon about you, so thought i had better share that with you. He is more than happy to have chat with you regarding K-pouch surgery. His name is Prof John Cartmill, He has rooms at Maquarie Uni and Penrith. He is most approachable Dr I know and I have few of them, unfortunately. If you are interested in seeing him he asked me to give his receptionist your details so they can book you a longer appointment. I am having a lot of trouble with this stupid lap top so I'll send this before I loose it and talk to you soon. We have a lot to talk about.
Wendy

Woohoo! K the first time I nearly fell off my chair. This time your response has me bouncing off the walls. Thank you so much for bringing my situation up with your surgeon! Unexpected, and appreciated.

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Well that's pretty awesome news there too Adroen. Hope it all goes well for you. Do let us know.
Alexander

Thanks Alex.

Well, surgery is approaching fast. Wish me luck.... Thanks to everyone who has offered advice, and information on KPouches on this forum.

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Keeping my fingers Crossed for you...good luck...I will be holding your hand 'virtually' through it all...
Hugs
Sharon

Cheers Sharon. You're an amazing human being.

Wow......
My surgery was cancelled, days away from surgery....
That's now the 4th surgeon that I've been blacklisted with.......
I'm being blocked from medical help, thanks to one person and their influence....
This isn't a movie unfortunately...
Sad day indeed.

I'm going to stop posting here about this as the person is probably getting pleasure out of my pain.

Oh my gosh! How terrible to be cancelled so many times and have surgeons basically "opt out" of your care. I'd like to say that this is the first I have heard of such things, but sadly not...

I wish I had something helpful to tell you, but I am sort of at a loss on this sort of thing.

Good luck on figuring it out. Let us know if there is something we can help you with.

Jan

Oh I'm so sorry Adroen. That really sucks.

kathy

Damn, darn and so not right...PM me and we will discuss it.
Sharon

Jan, Kathy, and Sharon, thank you for your support.

Will do Sharon.

Another new low today.
Got told by my local doctor(I don't think he was planning on saying it at first) that the reason no one will do surgery on me is because i'm an 'odd person', and that he agreed with that. It seems that original surgeon has really gone to town with some tales about me... My daughter was there with me... I was balling, she was balling. He wouldn't stop though, had to keep explaining what he meant. I don't think I'm odd....but even if I was, that stops you getting the 7 year old bleeding rectal tissue removed once and for all? That stops me having surgery to end all this and start a new life finally....I was lost, I kept telling my daughter we'd both wake up soon, and this was just a dream.
It's now 2 and a half years since I begged for a perm ileo and got shown the door, 2 years since I was given a stuffed temp ileo and still i'm bleeding away like anyone's business.... They do know this has the potential to go cancerous right.....since no one will treat me, it's going to be a little late to deal with it after it's through my whole body.

Lost again.

So, so sorry that they are being such bloody jerks over there...you need to be able to find a kind soul who doesn't give a crap about the other guys opinions...call around to private clinics, hospitals etc and find an old guy who has a heart but do not give up the fight!
Sharon

Well, latest update is I'm booked back in for a perm ileo through the same surgeon who cancelled the Kpouch.

Reasons:
1. I've never met such a positive upbeat surgeon as he was in that meeting I had with him. I actually haven't had many GP's as friendly as he was actually either to be honest. So I want to believe that was real.
2. Whatever the other guy told him really did kill my chance of a KPouch, and now nothing short of going to the USA is going to change my chance of getting one of them, or a BCIR for that matter. And cost wise, there's a good chance I'll hurt my family even more by taking that path. Financially, it will definitely hurt them in the near future if I went that way. Now when a respected person tells stories, unfortunately, true or false, people are going to listen. It's seeming like the 'mental card' that was played to get out of helping me years ago has been used ever since.

So for the time being I have to accept something that will, if successful still give me a better life than my current situation. So i'm going to grab hold with both hands and run with it.

Thank you for the support Josh. the USA is definitely the best place to be if you want choice for sure. The vast majority of people, from what I gather, get to choose what option they want to go with, be it JPouch, Kpouch, BCIR or Perm Ileo, without being forced down one path or the other. A surgeon may have a preference, but it is just that, a preference. We're the people who have to wear these operations the rest of our life in lots of cases, so why shouldn't we get a say in the way we are going to live.

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Ad,
If you can get hold of your medical file, please send me a copy and I will forward it off to my k pouch surgeon for a consult...then if need be and if he agrees, he can send back an opinion on your K pouch worthiness and maybe change your surgeon's mind...
Sharon

Thanks for the offer Sharon. I feel like that will just backfire on me and give the guy who's caused all this more ammunition. Even though our hearts would be in the right place, I think it would be seen as undermining my surgeon. I can't get out of my head how close I was to a better life(maybe of course). Just keeps running through my head.

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That is so dangerous Ad,
You need to be able to move forward with your life no matter what happens, no matter what medical solution you get..as long as you are no longer in pain, suffering or incontinent...life is way too short to waste on the stuff that we cannot have, you need to grab what you can get (which would not prevent you from getting a k pouch further down the line if and when possible) and heal, live and enjoy a bit of life...then worry about other stuff...for now this merry-go-round needs to stop so that you can get off of it!
Be healthy and make them fix you up and then you will have the strength and courage for 'other' wars (or you may not want to even bother once you get the end ileo..you may just like it!)
Hugs
Sharon