Types of bladder surgery

[Kip]

I have been advised by my uro that I have 3 options for surgery are;
1. Cystectomy
2. Cystoplasty
3.Otoaugumentation.

Complications I have to this are I have been neutropaenic for 5 years and I have Chron's disease, I also have chronic IGA glomerularnephritis, hydronephrosis, already had a urethrectomy.

Just wondered how others have got on and if anyone has had any of the above surgeries and could advise me on what additionally I should consider?

Many thanks

Kip

[DebbieD]

First I had a S2 Nerve Block. Where they go in the Lower Part of My Back and cut the 2 Main Nerves to the Bladder that Causces Pain. That did not work

Next I had 2 Cecum-cysto Plastic Bladers Made part Bowel and Part Bladder. Did not work. I was self cathing every 15 Minuites.

Nest Made My Ileo-conduit. But Left the Ureatha In. Did Not work

Had to Go BACK a Year Later and remove the Ureatha Cause is was forming another Bladder,

2 years Later I had a Revision done cause of a Blockage in the Loop

A year Later another revision later cause of Blockage

@ years later another revision cause of Blockage


2004 I had My Right Kidney removed.

1994 I had a Hysterectomy

2001 Had some Lung Surgery done.

2005 Had a Double J stent in and we change that every six Months. Cause the Left Urter is Blocked.

DebbieD

[Imustpee]

Hi Kip.....I had my bladder and urethra removed in Dec.....to make the whole story easier please read my story ( Link at the bottom of my post) than add to that that I went to Virginia Mason hospital in Seattle 2 weeks ago for a percutaneous nephrostomy procedure...

http://mhriweb.org/patient_informati..._CONTAINER.htm


I will have to have this tube in my back and leg bag until mid July and then fly back to L.A from Seattle where my dr will try to remove the blockage endoscopitly and if that doesn't work I will have to have another major surgery 3 days later where I will stay in the hospital for at least a week....

......even with all of this I would still have the surgery again in a second..I have no pain, frequency or urgency....I cath to empty my pouch every 5 hours....I did not make this choice lightly,,,this is a HUGE surgery, but I had suffered with I.C. for 40 years....good luck with whatever path you choose...

[Judith56]

Hi Kip,
My surgeries were as follows:
1. Augmentation cystoplasty- did not work since they left the base of the bladder the IC then spread to the newly augmented section, so 8 months later had
2.Cystectomy with an ileal conduit- they also removed my urethra(had it for 6 years)
3. I had a revision done on my stoma as it started to close off- called stenosis (this was done after 5 years)
4.Had it converted to an internal urostomy pouch similar to an Indiana pouch which I catheterize several times a day- I have had this now for 13 1/2 years and LOVE IT!
I have had other surgeries as well since getting my bladder out, such as gall bladder removal, hysterectomy, 2 surgeries for bowel obstructions, and angioplasty for blood clots in my chest. Some of these are related to my badder removal others were not
Knowing what I know now if I had to do it again I would opt for the internal pouch right off the bat as they create valves to help protect the kidneys so that there will be no reflux. This might be the best for you since you are having kidney trouble. Talk this option over with your surgeon. Judith

[Kip]

Thanks for all your replies, IC isn't the main problem I have with my bladder, it is severely trebaculated, overactive, as well as obstructed so I currently have to self catheterise between 15-20 times a day. I experience severe bladder spasms.

Currently I am in retention of urine most days as the spasms have become so severe it has been impossible to insert a catheter,and was diagnosed with vulvodynia last week and am finding it impossible to sit down as to add to this the skin in that area has completely broken down, however I have been doing lots of things to take my mind of the pain, gardening and decorating.

What is an indiana pouch? and where do they put the anastamosis for you to catheterise?

I have been ruled out for the spinal block as it has a poor success rate in the UK and the complications far outweigh the benefits for me.

i guess having to have a lot of urological procedures/surgeries already unfortunately because of my neutrapaenia and anaemia these have given me the most significant problems post operatively as I have ended up with life threatening infections following each surgery.

Has anyone developed problems with anaemia or recurrent infections following their surgery involving their bowel?

[Kip]

Hi IMUSTPEE,

I tried your link but it is currently unavailable.

Kip

[KKG]

Originally Posted by Imustpee

Hi Kip.....I had my bladder and urethra removed in Dec.....to make the whole story easier please read my story ( Link at the bottom of my post) than add to that that I went to Virginia Mason hospital in Seattle 2 weeks ago for a percutaneous nephrostomy procedure...

http://mhriweb.org/patient_informati..._CONTAINER.htm


I will have to have this tube in my back and leg bag until mid July and then fly back to L.A from Seattle where my dr will try to remove the blockage endoscopitly and if that doesn't work I will have to have another major surgery 3 days later where I will stay in the hospital for at least a week....

......even with all of this I would still have the surgery again in a second..I have no pain, frequency or urgency....I cath to empty my pouch every 5 hours....I did not make this choice lightly,,,this is a HUGE surgery, but I had suffered with I.C. for 40 years....good luck with whatever path you choose...

OMG when I read this it frightens me. They told my sister last year that she was having reflux and was seriouly looking to have surgery. I want the best procedure done the first time....I want the Dr to get it right the first time. They spoke about the leaving the pouch of the bladder and rebuilding ..I thought to myself then the bladder is diseased for heaven sakes why are we rebuilding on sinking sand???? Please anybody..everybody tell me the route to go....outside pouch...inside pouch...what roll does this play on her kidney since I was told the reflux could blow out her kidneys...in the long hail are we going to be need a recipent for a kidney transplant....anyone know these answers...It's my only sister and I have to know the best info I can get and be real with me...THANK GOD for this sight...KKG

[KKG]

Did all these other problems generate from IC or have you always had some health issues? First I thought all I needed to be concerned with was a bladder extration and now I'm reading urethrectomoy...what is that all about and what SX occurred to know this procedure needed to happen? I'm sorry I'm so stupied with all this new stuff but I have to learn from you folks so I don't make to many mistakes along the way... Anything at all you can tell me will be so appreciated. KKG It is a disease from hell and it's driving my sister crazy.

Thank you do much KKG




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[quote=Kip;239219]I have been advised by my uro that I have 3 options for surgery are;
1. Cystectomy
2. Cystoplasty
3.Otoaugumentation.

Complications I have to this are I have been neutropaenic for 5 years and I have Chron's disease, I also have chronic IGA glomerularnephritis, hydronephrosis, already had a urethrectomy.

Just wondered how others have got on and if anyone has had any of the above surgeries and could advise me on what additionally I should consider?

Many thanks

Kip


[size="5"][b]Kip,

[Judith56]

KKG,
First of all, this post was from 3 years ago. The person who wrote about having the tube in her back etc, is fine now, in fact she went back to school and now works in the medical field. Hopefully she will respond and tell you herself.
As for the answers to your questions, I am not a doctor, BUT I can tell that the rate of recurrence in the new pouch/bladder if any part of the bladder is still left in is very high. That is what happened to me and others that I have known over the years. If it was me, I would go for the internal pouch as when they create it they make valves so that there is no reflux to the kidneys. When they do an ileal conduit, that is where you wear an external pouch, there is reflux to the kidneys. So since your sister already has reflux the best thing would be to go with the internal, and maybe her kidneys will not have any more damage. Her doctor is the best one to advise her on that.
As for having her urethra out, I would ask them to do that since she no longer will have a bladder why does she need the urethra? I had mine taken out when they took out my bladder. Many patients have to go back at a later date and have the urethra taken out when they leave it in, because of continuing symptoms such as pain, etc. How old is your sister and where is she going to have this done? I want to stress that everyone is different and not everyonme has the same problems or any problems after surgery. I can tell you that the majority of people are very happy with the outcome.