what can you tell me about the k-pouch

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gfkak
Regular Member


Date Joined Sep 2006
Total Posts : 44
   Posted 5/16/2010 8:59 PM (GMT -6)   
i read about the k-pouch recently in a magazine it sounds amazing. i have alot of trouble with my illeostomy leaking and no one seems to be able to stop it no matter what products i use.
Im just wondering if the k-pouch is as good as it sounds to be, and whats involved in getting it
26yr old female
Australia
17 years with crohns
illeostomy for 4 years so far
on imuran
Arthritis
Asthma
Depression
and a bunch of other annoying stuff :D


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/16/2010 9:34 PM (GMT -6)   
Hi gfkak I am also an Aussie and saw the same thing in the ostomates magazine, I too am interested in knowing of anyones experiences with it as it appears to be more commonly done over in the USA. What part of Aus are you gfkak? I am in Queensland and would have to travel to NSW if I was to have the kpouch surgery done, but it really does look appealing thats for sure. Take care and I will also be watching this post with interest.
Doreen

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/17/2010 6:41 AM (GMT -6)   
gfkak~I did answer your question on your Crohn's thread and you wondered why they won't do an internal pouch when you have fistulas...if you have fistulizing Crohn's you could get them to the pouch causing more complications...some people with Crohn's do get K-pouches but they can struggle with complications (more than someone without the disease who has a k-pouch) and may have to convert their pouch to a permanent ileo.

Do you use convexity? Is your ileo permanent or temporary? Can you describe how your stoma looks? Does is retract?

I am sorry you are having issues with leaks:( There are many people on here who may be able to help...sometimes even a 'step by step' of how you clean/care for you stoma can help...I hope you find an answer!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 5/17/2010 8:19 AM (GMT -6)   
I only know of 1 person that posts here with a k-pouch. Her name is Lizzie! She usually posts on the total colectomy part 34 thread...she is currently recovering from a surgery to fix a slipped valve. This can be a complication with the k-pouch. I am sure she will come along and post back to you when she is able.

gfkak
Regular Member


Date Joined Sep 2006
Total Posts : 44
   Posted 5/17/2010 8:55 AM (GMT -6)   
thanks guys.
Im not sure what convexity is, possibly because i live australia. My ileo is temorary but due to on going problems i believe it will be made permanent, which is why i was excited to see the k-pouch. my stoma is only small it doesnt stick out as much as they do in the pictures you see, it also changes shap alot it can go quite flat at times.
I thought maybe the kpouch was the answer to a better life but im guessing with my fistular problem as well its not going to happen.
thanks heaps for answering i appreciate it :)
26yr old female
Australia
17 years with crohns
illeostomy for 4 years so far
on imuran
Arthritis
Asthma
Depression
and a bunch of other annoying stuff :D


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/17/2010 11:41 AM (GMT -6)   
gfkak~That's it...the fact that your stoma is going flat is causing your leaks! You would benefit from convexity, to some degree, but I'd suggest a stoma revision. Permanent stomas are easier than temporary ones since they only have one hole (temporary are like a garden hose cut half way through and have a top and bottom hole).

Convexity is where the wafer has a 'cupping' to it. here is a link just to show it: /www.edgepark.com/shopCatalog/ShowItemDetails.cfm?PSKU=6214642&cat1=&cat2=&cat3=&catid=&subcatid=

they usually come in two different 'strengths' light and full convexity.

Talk to your doc about a k-pouch, just know that fistula complications might rule it out, it never hurts to ask!

Yes, Lizzie does have a k-pouch, but she doesn't have a Crohn's dx, so it's a little different.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 5/17/2010 7:03 PM (GMT -6)   
Hey gfkak
I also live in Australia and use a convexity pouch. You need to see your stoma nurse and she can show you the different pouches or you can see them in your ostomy magazine that you get, and call a few companies for some samples.
Good luck
Doreen

gfkak
Regular Member


Date Joined Sep 2006
Total Posts : 44
   Posted 5/25/2010 3:14 AM (GMT -6)   
Thanks guys,
to answer questions im from Victoria, and i do try the new products in the ostomy magazine how ever nothing has helped as yet. As for the stoma nurse she is an idiot and has been completly useless, i was lucky enough to meet a woman when i was in hospital though that use to have an ileo and she taught me everything she knows.
i have an appoinment in with my surgeons where i will hopefully find out more about the k-pouch and also about seeing a different stoma nurse somewhere else.
For the moment my ileo is just a temp one but i dont think i will ever be able to be hooked up again ive just had too many problems
thanks again :) 
26yr old female
Australia
17 years with crohns
illeostomy for 4 years so far
on imuran
Arthritis
Asthma
Depression
and a bunch of other annoying stuff :D


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/25/2010 5:30 PM (GMT -6)   
if you decide to go permanent, have a revision, you'll be happier when your stoma doesn't retract (flush to skin)!!!
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


julsgirl
Regular Member


Date Joined May 2010
Total Posts : 37
   Posted 5/25/2010 10:30 PM (GMT -6)   
hi gfkak, i was jst reading or posts & im also from Vic, Australia! im 28 & was diagnosted with Crohns 10yrs ago. I also have an ilieostomy which was put in about 8 months ago.Mines temp but im told i will have to have it permanent in the future n have my colon removed. What hospital do u go to if u dnt me asking?> my stoma nurse is really good & my stoma was jst like urs...small/ flat at 1st, leaked etc and iritated my skin bad!! my surgion did a small procedure & pull it out a bit so it didnt leak & cause my skin to irritate n its alot better so ask ur surgion about that?.
Im guessing u still have ur colon?
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