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Bag or no bag??

mnerad
Posts: 5
Joined: Mar 2010

My wife just had a transurethal resection and the pathology came back that she has a high grade invasive cancer that will require the bladder to be removed. She is 59 and in excellent shape. Her surgery will be in a week and a half. I have a couple of questions:
1) She is leaning and I support the ostomy with the bag. She is not a candidate for the neobladder because of the size of the tumor and its location. We don't like the navel with catheder as it seems to have to many other complications. This will be a tough psychological adjustment for her. I hope that it is the right decision but it seems least complicated with fewer side risks...2) what is the recovery like for the surgery? Doc say in hospital 7 days but is guessing it will be less for her. Can she go and up and down stairs when released? Will she be in much pain when she gets home? Is the ostomy difficult and painful to get use to? Any help with information is greatly appreciated. Thank you.

dukers101
Posts: 14
Joined: Jan 2010

My husband had the surgery 1-26 and chose no bag as he wanted to be able to urinate as he always has. He has a few catherters, one they just removed theother day and other drains coming out of him on either side of his stomach area. The thing to be watchful about is when these catherters are in you for a while, you are prone to infections. He has had 2 that has landed him in the hospital twice, just got out theother day after being there for 7 days- he almost didnt make it because the infection went into the blood stream.Make sure the doctors do give her antibiotics to be on!when he first got home,he was in a lot of pain for the first 2 days. The trick is to take the pain meds before it starts like every 3 hrs, he was on Oxicoten (sp?)After the first few days, no more pain. I also suggest after the catherter use, you buy adult diapers as she may need them. I know this is a lot of information but if there is anything else you need to know, send me a message.He also had a high grade non invasive cancer- they treated it first with BCG and sometimes it worked and no it wasnt so this was theonly option left. He was in the hospital the first time 7 days.Its not a picnic but just be supportive....its very hard. Take care

mnerad
Posts: 5
Joined: Mar 2010

Thank you...all information any insight is helpful at this point...greatly appreciated

mnerad
Posts: 5
Joined: Mar 2010

I don't know why you were the only one kind enough to answer. Maybe my question was not clear. My wife is inclined to go along with her doc and get the bag on the outside. I am afraid that we would eventually end up there any ways and I think we might as well bite the bullet and get it done without all the pain and suffering in between. That is what her doc said, as bad as it is. thank you

dukers101
Posts: 14
Joined: Jan 2010

Have you gotton a second opinion and also "talked" with folks who have the bag on the outside? All I can say is my husbands doctors said many people have the bag on the outside for many many years and there is no issue, no one knows and they go on with their daily lives. In my husbands case, he did not want the bag for his own personal reasons. He is still dealing with catherter issues where he has to self catherized himself for the next 30 days once a day and he has a bag on the outside. As I said before buy adult diapers with extra pads- this can be purchased at Costco- not sure where you live. I just hope you checked for a second opinion-very critical!

NP101
Posts: 3
Joined: Jul 2010

I wasn't clear on what type of surgery your husband had. You said that he did not want the bag on the outside. Did he have the "neobladder"?

Ndos
Posts: 1
Joined: Jul 2010

A close friend of mine has the neobladder (from part of small intestine) surgery scheduled and I'm trying to figure out what he will go through during his postop period - stage IV cancer. Aside from the period where there isn't much in the way of bladder control, I'm wondering what he will immediately have to prepare for. One of the doctors mentioned something about a colostomy...is it commonplace for a person to have a temporary colostomy after this surgery?

neeni
Posts: 4
Joined: Mar 2010

My husband was diagnosed with stage 4 cancer in August. His left kidney was enlarged because it was retaining urine. The cancerous tumor had been compromising his ureter making total elimination impossible. It was determined that a nephrostomy tube be placed in his back draining the left kidney. The tubing went from his back to a bag secured with a belt at his waist. Having the first order of business being, beating cancer, he willfully accepted the bag. There were absolutely no problems. It was 100% successful.

Now, after four months of chemo therapy we have the choice of the neobladder or what your wife is facing the "ostomy". We have been told that the "ostomy" is far less restricting than the "nephorostomy tube" and that complications are almost non-existent. We are seriously considering that procedure over the neobladder even having the choice. There are so many possible complications from the neobladder and potentially more maintenance issues. We are still considering our options.

Best wishes to you and your wife. Believe me when I say, having experienced even the far more cumbersome "nephrostomy tube" via my husband, a bag becomes just another appendage easily tolerated especially when it is a bridge to living and enjoying life.

u4art
Posts: 44
Joined: Nov 2005

your research is correct ...the urostomy has the least compications and is the easiest of the 3 types of ostomies to care for ... I have had the bag for 21 years .
There should be no pain after surgery..ever .... if there is ...your surgeon should be sued
and his testicals cut off.

I have not had a urinary tract infection in 22 years and I have had my transplanted kidney
attached to the same ostomy 8 years ago.

the flange and bag are changed once a week ...takes about 1/2 hour ...then forget it
..except when peeing at a urinal you must remmeber to take the bag out of your fly and not the other.

I think the risk of infections and muscle training complications related to the neobladder are not worth it..... I have not not heard of anyone that does not pee themselves when they cough ...... wearing a diaper has even more complications
I would definitely recommend the ileal conduit Urostomy ...it is the safest and least
intrusive in your lifestyle. There are no physical restrictions.

I do know the man who played NFL football with teh San Diego Chargers ...hehad an ostomy for the 7 years in which he sett the team scoring records

NP101
Posts: 3
Joined: Jul 2010

Just a couple quick questions concerning the bag. Does the bag feel flimsy or weak like it could bust easily? I am up for a neobladder surgery in a month and was weighing my options prior to having the surgery done. Can I wear the bag with my shirt tucked in?

u4art
Posts: 44
Joined: Nov 2005

Everything will feel as it did before.

I suggest you buy, beg, borrow or steal a flange and urostomy pouch .... fill it 1/3

with water and stick it onto your belly to your right of center,

so the flange's top edge is at waist level

and the left edge is just shy of your mid line.

Wear this for a day and you will know how it feels and how your clothes will fit

When the pouch gets 1/3 full it is approx time to drain it and this correspond to the times

you would pee before. There is no pain...ever

silver_kate
Posts: 1
Joined: Jan 2011

Where can I get the book? My husband was diagnosed with bladder cancer last Thursday.
We are in another town getting Surgical consults on Monday. I am trying to make sence
of all of this sence he had no symtoms and the cancer was found during a bladder stone
removal surgery. He had a fistula between his bladder and colon undiagnosed for about 8
weeks. This we did have symptoms of but were told they were bladder stone symtoms
I didnt belive it and I was right. Oh well. Lets get it fixed.

WorryRosey
Posts: 1
Joined: Jul 2011

I assume you had the survey last year, which way did you go neobladder or bag? How are you doing? I am were you were at last year, but my surgery is next week and I still have not decided on which way to go. Any suggestions and/or feedback would be greatly appreciated.
Hope you are doing well.

Conchal's picture
Conchal
Posts: 42
Joined: Apr 2011

in April (3 months ago now) and went with the urostomy. Prior to surgery, we discussed the bag vs the neobladder approach with the urologist and she decided on the bag after weighing the options. Other than a few initial problems, she thinks it was the right decision.

We have experienced minor leakage (at the first, as we were getting used to all the necessary changes) and experimented with one and two piece devices, with barrier rings, and with other things (skin prep, stoma paste, etc). We have finally settled on some best practices (for us) and are now taking it all in stride.

Our urologist told us that the neobladder could leak for the first 6 months, may become infected and could lead to another surgery. Faced with already overwhelming cancer surgery, my wife said "Give me the bag." No regrets here, WorryRosey.

Our very best wishes to you and we hope you have a successful surgery.

Con

bjstubbings
Posts: 2
Joined: Jun 2012

Hi, just chiming in with my input. I'm a 43 yo female and will be having by cystestomy August 15th. There was never any doubt in my mind I would go with the Indiana Pouch (continent cutaneous pouch). I don't think that's what they technically call a neobladder-- but it's made from your large intestine and goes under your abdominal wall.

I know I'll have to train my new bladder, but there are many I've spoken with who live perfectly normal lives with IP-- no adult diapers, no leaks, no getting up all night to pee. Bear in mind, my original bladder hasn't performed to factory specs, so maybe I have more realistic expectations than people with no history of bladder problems!

As a woman-- and this is nothing but my opinion, for what it's worth-- there is just no way I'm going through life with an ostomy if i can help it. Vanity? Sure, why not. But I have two little kids and a long life ahead of me with a lot of running around on the beach-- no bags, here!

Good luck with whatever you decide!

BJS

frank63
Posts: 2
Joined: Nov 2013

I am a 63 year old very active male. I have to get a Radical cystectomy. My wife and I live on a boat and travel. (now on stand by do to condition) I also love the sun and beach. Vanity yes. The continent diversion is different then the neobladder. seems to be alot of problems with neo. Do you have the continent diversion? Any problems? Only have 2 weeks to decide. Need all the help I can get. 11-22-13.  For any males out there. They also want to remove my prostate. At this time the Doc says this is normal act of prevention to stop the cancer. No reports show the bug is in the prostate. I would like to make the desion to keep my prostate,and take the gamble. I so much enjoy my active sex life. This is so hard to except that I may lose it. Yes, I do want to stay alive but giving up sex is very hard to deal with. I am having a very hard time mentaly dealing with this. Any and all info will most be helpful. We are located in Palmetto,FL.

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