New to this and facing RC

15 years 5 months ago #22639 by RAH
Replied by RAH on topic New to this and facing RC
I had an Illeal Conduit, and am happy with it.
There are many of us that have this oldest diversion. There are pros and cons to each diversion. What you will find is that most people are happy with the diversion that they received. Take your time to understand the advantages and disadvantages of each diversion.
Here is my description of the Illeal Conduit.
During surgery, after they remove the bladder, they take a section of the intestine and connect one end to the kidneys by the way of the ureters. Then they connect the other end outside the abdomen (this is called a stormo). The stormo is placed about 5” to the side of the belly button. My stormo sticks out from my abdomen 2 inches. Some doctors only have the stormo stick out a .25”. My doctor told me he has better results with leak prevention and less infection with a longer stormo.
The urine then flows directly from the kidneys through the ureters and out through the stormo. Since there is no reservoir for the urine to collect, there is a need for a bag to collect the urine. An adhesive pouch sticks to the abdomen and around the stormo. A bag connects to the pouch (like a tupperwear lid connects to a bowl). The pouch lasts without leaks for 3 - 9 days (depending on body type).
The convenience of this diversion is that there are very few leaks (once you get a pouch that fits to your body size). Also, I sleep throughout the night without getting up to relieve myself. I connect to a larger night bag that is next to my bed by a 6 foot hose. This allows me to toss and turn during the night.
I can not wear a belt because the stormo is at my belt line. When I wear a belt – standing and sitting sometimes causes the belt to burp the bag from the pouch (tupperwear lid reference of burping). When that happens there is leaking. All I have to do is reconnect the bag to the pouch, but urine already has leaked out by the time I notices the disconnect. So, I wear suspenders instead.

Good luck to you. There is a bunch of good information on this site. It helped me to make my decision 1 1/2 years ago.
Take Care
Rick

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15 years 5 months ago #22631 by Patricia
Replied by Patricia on topic New to this and facing RC
Wow...lots of questions. Your second Uro is right and how lucky you are to have gotten that second opinion and re-turb. Thats one of the biggest problems with this cancer...uro's who do not see a lot of bladder cancer sometimes do not get a sufficient sampling into the layer of the muscle for the pathologist to look at..and if margins are left you definately can have reseeding of the original tumor. USC/Norris is a great hospital specializing in bladder cancer....either one of the Dr. Skinners are both in best docs in the USA...and since they see so many bladder cancer patients they also will do nerve sparing surgery if you are a candidate for it..a lot depends on what they see when they get in there.
As for diversions..you can't compare the male to the female answers. And i don't care what they write or how hard they want to sell neobladders to women..women do not have the same results. Their urethra is much shorter and ineveitably they will have to cath to get out residual urine and are much more prone to UTI's than men. The neobladder seems to work out pretty good for the men depending on compliance and age and the skill of the surgeon.
Here is the bio of Eila Skinner at USC/Norris
www.doctorsofusc.com/doctor/bio/view/117
And here is Donald Skinner
www.doctorsofusc.com/doctor/bio/view/109
As for not being able to take the entire tumor away....not always true..depends on size and location and methods they use. On my Re-turb which was done by a first rate surgeon in NYC he removed all of the residual margins and tumor. An alful lot of results in my opinion is based on the single solitary skill of the surgeon...thats it! They are not created equal.
Most surgeons will not even let a male know there is another option to the neobladder besides the outside ilial conduit. There is also the Indiana Pouch which is what most women choose. Thats what i decided on for my personal reasons. I have a navel stoma which is quite accessable and the pouch lies just behind it. It does not bulge at all and my stomach looks normal believe it or not..All scars are gone. You do have to train it just like the neo but once it gets the idea that its a bladder and not a colon it behaves pretty well. I am over 5 yrs out and only have to cath during the day maybe 4 times and i sleep through the night. The downside is you do have to cath..but insurance will now pay for 200 catheters a month so you do not have to reuse. Medicare sets policy on that and they just made that revision.
You've been recommended to an excellent facility and should have a great
outcome. Once its invasive the bladder has to go..don't mess with it...get it out of there.
There are many men on this site with a neo who are very happy with their choice. Hope Tim and others will chime in.........Good luck........Pat

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15 years 5 months ago #22627 by Cynthia
New to this and facing RC was created by Cynthia
This is from a gentleman named Vince who is new to all of this and has questions. He asked me to post this for him as he finds his way around here.

A resection and biopsy 3 months ago showed a couple of tumors, and one was T1 superficial but high grade.cat scans, all tests showed no other cancers we tried BCG, but bleeding returned. Another URO did a "deeper surgery" and this time the biopsy showed muscle invasion. He said the other URO may not have gone deep enough. He said the only option was removal of the bladder. He would send me to USC

1) I asked if we could try intravesical chemo.He said this would not work any comments?

2) I guess there are 2 types of surgery: One is where they leave a hole in the bellybutton, and the other is where you can pee normally.
I've been in email touch with people who have had this removal. 2 men say they have had no problems with urination, etc after a couple of weeks of wearing a catheter... they had the type where you pee normally. They just have to use Viagra or a pump... but a woman says she has had leakage, has to use tubes, syringes, etc, and that a friend of hers has had 7 surgeries! I don’t know yet which type of surgery she had.
So, does it depend on the surgeon? or is it the type of surgery that may make a difference? i read the article where it said there was no real difference in complications between the two.
I would prefer the type where you can pee normally

3) i guess they have 2 different surgeries even for a resection.. The second URO aid his was a different kind of surgery than the first, where he went deeper?

4) An oncologist said that UROs cannot take the whole tumor out anyway, since they use a thin needle is that true?

Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society

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