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Radical Cystectomy Options?

4 years 8 months ago #48299 by Lelly
Thank you, Cynthia, for responding to my questions. It really helps me as I think through this decision. Have a good weekend. I will let you know if I have other questions. Lelly

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4 years 8 months ago #48298 by Cynthia
Lelly,

I will see if I can answer a few of your questions.

Does it hurt to cath?- I remember being very apprehensive the first time I cathed I expected it to hurt. It did not and never has.

Training- After surgery when you are ready they will remove the tube that was used for the urine to drain into a bag while you have healed. They will have you start cauterizing on a schedule. My Urologist told me to do so every two hours for the first week. Then we added a half hour the next week and so on until I was up to four hours. It was like having a new baby for a few weeks but it was just something you had to do. Neos have to be trained also.

Can you tell you have to go? - Yes it takes time but now I can feel that my pouch is getting full. Mine will leak if I let it get to full. If I have leakage it is my own fault generally. You can once in a while get a irritable pouch and it can be a little more unpredictable and I will wear a mail guard in the front of my panties. I will also wear a guard over my stoma if I am in a situation I do not want any surprises such as when traveling. But other than that I do not need a bad aid or anything over my stoma my stoma once it healed looks like a little pucker. I have been told that people who have their stoma s on their abdomen usually put a covering over it. If you remember from before mine is in my naval.

How long does it take to cath?- It depends on how bad I need to go. There are times I will enter a stall in the ladies room with a friend and be done about the time they are. Please remember this is after much practice I literally can cath in my sleep I think. When I first started it took me longer practice makes perfect right?

Do you leak at night?-To keep from leaking at night I started by setting an alarm clock for four hours but I stopped when I would invariably wake up before it went off. I now wake up on my own once a night without fail.

How do you wash catheters when away from home?- I have used both reusable and disposable catheters. When using reusable you carry two baggies on with clean and one for dirties then you can just wash them at home. Normally when I travel I use disposable ones it is much easier and you just throw them away once they are used. They are more expensive but well worth it and many insurance companies will pay for so many a month, you would need to check. I carry a makeup pouch in my purse. Inside it is a small bottle of hand sanitizer, catheters, lube packets and small bags for disposal or for dirty catheters.

Will other ladies in the restroom notice you are facing the toilet to void?- You can either void standing or sitting I find I get a better cath standing but you can do either if need be. I personally feel that if anyone has nothing better to do than look under stall doors they deserve to see something. But to tell you the truth after all these years I have never had an incident where this has happened.

If you have more questions let me know I know this is a hard decision and I am trying to be honest in my answers. But don’t feel pressured by the fact I am happy with mine we all have our own needs and have to keep that in mind.

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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4 years 8 months ago #48283 by Alan
Lelly,

Here a quick site about the 3 basic diversions: http://my.clevelandclinic.org/health/treatments_and_procedures/hic_Urinary_Reconstruction_and_Diversion

DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
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4 years 8 months ago #48282 by Lelly
Thank you for sharing your story with me, Cynthia. You made me laugh out loud with your peeing in the snow. That is a talent that I just may enjoy! What do you mean when you said, "once it was trained"? When your Indiana pouch is getting full do you feel it or do you just know that on a regular basis (every four hours) you must cath? If you oversleep, does it just leak out? Sorry for so many questions, but this is very new for me. Do you keep your stoma covered with a bandaid? Does it hurt to cath? How long does it take to empty your pouch? I worry about finding a place to wash the catheter when at work. Is that ever awkward? Again, thank you for your honesty and willingness to help me with this decision. Lelly

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4 years 8 months ago #48281 by Cynthia
Lelly, I am sorry you are here but welcome.

I am ten years out of an invasive TCC bladder cancer diagnosis my case is a little different than yours but I do have an Indiana Pouch as a buddy. I had my chemo prior to surgery and also had pelvic radiation as part of a clinical trial trying to preserve my native bladder that failed. In May of 2006 I had my Radical Cystectomy at the University of Chicago Hospital done by Doctor Gary Steinberg.

The basic difference between the Neo and the Indiana as far as construction is the way the urine leaves the body. With the Neo they reattach to the urethra and with the Indiana they make a stoma on the abdomen. I have my stoma in my naval and no one would know it was there if I did not tell them.

I did not have a choice of what diversion to have as the cancer had spread to my urethra so a Neo was out. But having said that I think I would have gone with the Indiana as I already knew woman with both and it seemed to me that the Indiana was less problematic . For some woman the Neo works perfectly after time and training go into it for others they are either hypo continent of incontinent. I have read that up to a third or a quarter of woman have issues with the Neo. I have asked why men have fewer problems with the Neo than woman but have yet to get a firm answer, but one would think it has something to do with the female anatomy. I am not saying the Indiana is perfect, nothing is and both can have issues and take training.

For me the Indiana has worked well I was in my 40s when I had it done and didn’t want to wear an outside appliance, if that is vain so be it. I have hiked, danced, exercised and gone snorkeling with my Indiana. I can honestly say once it was trained and an issue with the stoma being too tight was taken care of the Indiana has not kept me from doing anything I wished. I cath about every 4 hours or so depending on how my tea I have drank, at night I get up once. As a matter of fact while hiking it is really great to be able to write your name in the snow so to speak just like the guys. I collect makeup bags but a baggy will do and I carry with me small packs of lubricant, a mini hand sanitizer and disposable catheters with me when I travel. It has become second nature to preplan what I will need to pack for a trip
.
I hope someone hops in and talks about the Ileal Conduit I can tell you the basics but do not have personal experience with it. I do know one of the pros is that the surgery is usually shorter when it is done. Statistics do show that the higher volume your surgeon does of the diversion you chose the better the outcome.

I hope this helps if you have any questions we here.

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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4 years 8 months ago #48276 by Lelly
Hi. I was diagnosed last month with adenocarcinoma of the bladder and am looking ahead to the radical cystectomy that is going to take place in the near future (either before or after chemo). My head was spinning after meeting with the surgeon. Of the three options, he said he wouldn't recommend a Neobladder. I would appreciate any experience you've had - either positive or negative related to either the Ileal Conduit or Indiana Pouch. I don't know anyone who has had this operation and would really value your first hand experience and thoughts. As you know it is a hard decision to make. I am a 54 year old female. I'm a busy sixth-grade teacher and someone who loves outdoor activities such as hiking, canoeing, biking, gardening, etc. Thanks!

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