I'm hoping my urologist will look into this as an option for me! I have Bacterial Cystitis (I think) I've been on antibiotics most of the time for about 18months and I feel horrendous alot of the time. I have a neurogenic bladder and self catheterise at the moment.
Kirst - that's the first time I've seen that video and it brings it all back to me - I can't imagine how we coped during that terrible time including those years of great suffering before the surgery... hope you are keeping well - Phil x
Its now 9 weeks since i had my cystectomy and illeal conduit and am now the proud owner of a stoma and dodgy bags. Its been crap and ive had no end of trouble and im really hoping that im on the way up now. The surgery i breezed but got septic afterwards and have had in total over six weeks in hospital with other complications too. Would never have dreamed that it would be this hard. Recovery has been very hard!!
Im sorry you have had such a rough time! Nine weeks is very early and it can take 6-9 months to fully recover in all ways. Once you physically recover you may find then you deal with a change in body image and other issues related to a serious surgery. Im now two years post op and it hasnt been a breeze but it does get easier, i dont regret the surgery as infection symptoms are more tolerable now.
Take it easy, dont push yourself , there is a light at the end of the tunnel :)
How long was your tunnel!!! I have so many questions!!! Ive been given the option that i could have it the continent diversion at a later date but after this experience i think i would definately definately think twice. Thankyou so much for all your stories and advice. Its people like you that can make others understand a bit better. I have an amazing consultant and stoma nurse and theyre great but your real and its not just words if you see what i mean. x
I had a continent urinary diversion done first when I had my bladder removed in 2001, it was a major surgery, and in the end it failed. I now have a urostomy, even though i am a 28 year old guy, I would rather have the urostomy than the problems I incurred with my continent urinary diversion. However, it works well for some.
sorry to hear things havent went great so far. dont despair!! Im a 28 year old male, I had a neo bladder made in 2001, and it failed, I had a cystectomy and urostomy put in situ in 2005 when I was 23. It takes a while after having a stoma formed to find the right appliance (Bag). I have been through it all, if you would like to talk some more, or if I can be of any help, message me on youtube and I will give you my email. Keep positive, it will become a breeze!
Hi im confused :) U had a neobladder first and they left your native bladder then they gave u a cystectomy and an ileal conduit? Can I ask how ur neobladder failed and did u hav the catheterisable channel also or urethral? Was it a leaking issue and did u wear a bag with the leaking> sorri :)
Ok, in 2001 I had a cystectomy, they made a neo bladder which was attached to my urethra and I was able to urinate normally. In 2005 I had severe complications and the neo bladder was removed and I had an ileal conduit/urostomy done. I didnt have a catheterisable bladder, thats a mitrofanof.
Ok thanks deckywash:) This is what they call it here
I had the cystectomy with a neobladder formed and a catheterisable channel into the neobladder.
Yes it should be called a mitrofanoff as its the appendix, but the docs here reserve that for people with a native bladder and a catheterisable channel formed for emptying.
I had exactly the same thing the call it a mirtrofanof were its a little hole but i have to have it permently and i had a bladder inlargement as well im glad it went ok did they out 2 cathiters in after da op for the first month?.. well im 13 i had this when i wa about 7 and luckly it went ok the first year was hard with washouts ect but i manged which hospital performed this for you ?? thanks Thomas
Hi Thomas, I had my bladder removed and a new one made from my small intestine. The mitroffanoff is the appendix that I use to catheterise my new bladder. yes I had multiple catheters in for a month and two small ureter tubes going from my kidneys to my new bladder for two weeks. They usually fall out afer 10 days but they removed mine in the second surgery. I had the surgery at a Hospital here in NewZealand.
I am glad everything has gone so well for you!!! :)
theres two types of continent urinary diversion. The mitrofanof if i am not mistaken has to be catheterised to be emptied? my neo-bladder was reattached to my urethra, and I was able to void normally as before. However I now have a urostomy.
Hi, ive just been told i need what youve just had done. Be honest... i had a hysterectomy that was a walk i the park but this gonna hurt somewhat isnt it!!! I have fabulous surgeons but its after that fills me with dread!!
Glad your surgery went well. My husband found he had bladder, prostate and kidney cancer via heart attack in Feb09. He's 75. Radical cystectomy completed 9 April...needed difibulator/pacemaker the next week. He's tough and home and trying to gain weight. Left kidney, bladder, prostate and urethra removed..and some lymph nodes. Cancer did not invade other organs.
Enjoyed watching your journey and glad you are recovering! Best of luck to you!
I had mine done 21 months ago and have to say from what I've seen and read on the net mine went really well, I can only say to anyone who's going through this or has been through it is to stay positive. The end results can certainly be worth it and life does get back to normality.
Thanks for posting this video and I hope all is going well for you
Thank you for your comment. I hope your surgery goes well. :) Everyone responds differently to these procedures, Just stay positive as its a challenging journey.
aaaah aaaah very love
sukito600 10 months ago
Thank you for sharing your story. I hope that you are well!!!
elenacerasela 1 year ago
Hi,
I'm hoping my urologist will look into this as an option for me! I have Bacterial Cystitis (I think) I've been on antibiotics most of the time for about 18months and I feel horrendous alot of the time. I have a neurogenic bladder and self catheterise at the moment.
Any advice is appreciated.
I hope you're doing better now x
sparklyAli 1 year ago
Beautiful woman you are.
Clickgirl 1 year ago
Hey its you phil, I just checked out your site and realized who it was :)
Hey you just live with it and get on don't you, no other choice. It would be nice if i had some sei decent care here, but I would have to leave nz :)
How are you doing now? everything ok with you?
kdfb35 1 year ago
Kirst - that's the first time I've seen that video and it brings it all back to me - I can't imagine how we coped during that terrible time including those years of great suffering before the surgery... hope you are keeping well - Phil x
westcell 1 year ago
Its now 9 weeks since i had my cystectomy and illeal conduit and am now the proud owner of a stoma and dodgy bags. Its been crap and ive had no end of trouble and im really hoping that im on the way up now. The surgery i breezed but got septic afterwards and have had in total over six weeks in hospital with other complications too. Would never have dreamed that it would be this hard. Recovery has been very hard!!
nancyreynard 2 years ago
Im sorry you have had such a rough time! Nine weeks is very early and it can take 6-9 months to fully recover in all ways. Once you physically recover you may find then you deal with a change in body image and other issues related to a serious surgery. Im now two years post op and it hasnt been a breeze but it does get easier, i dont regret the surgery as infection symptoms are more tolerable now.
Take it easy, dont push yourself , there is a light at the end of the tunnel :)
kdfb35 2 years ago
How long was your tunnel!!! I have so many questions!!! Ive been given the option that i could have it the continent diversion at a later date but after this experience i think i would definately definately think twice. Thankyou so much for all your stories and advice. Its people like you that can make others understand a bit better. I have an amazing consultant and stoma nurse and theyre great but your real and its not just words if you see what i mean. x
nancyreynard 2 years ago
I had a continent urinary diversion done first when I had my bladder removed in 2001, it was a major surgery, and in the end it failed. I now have a urostomy, even though i am a 28 year old guy, I would rather have the urostomy than the problems I incurred with my continent urinary diversion. However, it works well for some.
deckywalsh1 2 years ago
sorry to hear things havent went great so far. dont despair!! Im a 28 year old male, I had a neo bladder made in 2001, and it failed, I had a cystectomy and urostomy put in situ in 2005 when I was 23. It takes a while after having a stoma formed to find the right appliance (Bag). I have been through it all, if you would like to talk some more, or if I can be of any help, message me on youtube and I will give you my email. Keep positive, it will become a breeze!
deckywalsh1 2 years ago
Hi im confused :) U had a neobladder first and they left your native bladder then they gave u a cystectomy and an ileal conduit? Can I ask how ur neobladder failed and did u hav the catheterisable channel also or urethral? Was it a leaking issue and did u wear a bag with the leaking> sorri :)
kdfb35 2 years ago
Ok, in 2001 I had a cystectomy, they made a neo bladder which was attached to my urethra and I was able to urinate normally. In 2005 I had severe complications and the neo bladder was removed and I had an ileal conduit/urostomy done. I didnt have a catheterisable bladder, thats a mitrofanof.
deckywalsh1 2 years ago
Ok thanks deckywash:) This is what they call it here
I had the cystectomy with a neobladder formed and a catheterisable channel into the neobladder.
Yes it should be called a mitrofanoff as its the appendix, but the docs here reserve that for people with a native bladder and a catheterisable channel formed for emptying.
kdfb35 2 years ago
I had exactly the same thing the call it a mirtrofanof were its a little hole but i have to have it permently and i had a bladder inlargement as well im glad it went ok did they out 2 cathiters in after da op for the first month?.. well im 13 i had this when i wa about 7 and luckly it went ok the first year was hard with washouts ect but i manged which hospital performed this for you ?? thanks Thomas
thomas887 2 years ago
Hi Thomas, I had my bladder removed and a new one made from my small intestine. The mitroffanoff is the appendix that I use to catheterise my new bladder. yes I had multiple catheters in for a month and two small ureter tubes going from my kidneys to my new bladder for two weeks. They usually fall out afer 10 days but they removed mine in the second surgery. I had the surgery at a Hospital here in NewZealand.
I am glad everything has gone so well for you!!! :)
kdfb35 2 years ago
theres two types of continent urinary diversion. The mitrofanof if i am not mistaken has to be catheterised to be emptied? my neo-bladder was reattached to my urethra, and I was able to void normally as before. However I now have a urostomy.
deckywalsh1 2 years ago
Good Video
henndri 2 years ago
Good Video
henndri 2 years ago
Hi, ive just been told i need what youve just had done. Be honest... i had a hysterectomy that was a walk i the park but this gonna hurt somewhat isnt it!!! I have fabulous surgeons but its after that fills me with dread!!
nancyreynard 2 years ago
Glad your surgery went well. My husband found he had bladder, prostate and kidney cancer via heart attack in Feb09. He's 75. Radical cystectomy completed 9 April...needed difibulator/pacemaker the next week. He's tough and home and trying to gain weight. Left kidney, bladder, prostate and urethra removed..and some lymph nodes. Cancer did not invade other organs.
Enjoyed watching your journey and glad you are recovering! Best of luck to you!
abbeydoo 2 years ago
I dont know how I missed this comment? Thank you for it:) I hope your husband is recovering and things have gone well.
Best of luck
Kind regards
Kirst
kdfb35 2 years ago
I had mine done 21 months ago and have to say from what I've seen and read on the net mine went really well, I can only say to anyone who's going through this or has been through it is to stay positive. The end results can certainly be worth it and life does get back to normality.
Thanks for posting this video and I hope all is going well for you
daniisouth 3 years ago
Hi Danii
Thanks for your comment. I'm glad things have gone so well for you!! It good to hear from someone else who has had it done here.
Kind regards Kirst
kdfb35 3 years ago
Thank you for your comment. I hope your surgery goes well. :) Everyone responds differently to these procedures, Just stay positive as its a challenging journey.
kdfb35 3 years ago
This video has just shown me what I am about to go through....I am concerned but I know that I can trust my surgeon. My op will be in August 2008
sugarplumhellspawn 3 years ago