Just diagnosed with stage 3 CIS

14 years 11 months ago #25002 by balihigh
Replied by balihigh on topic Just diagnosed with stage 3 CIS
Doug,
You are on the other side of the state from us. Waynesville is near Asheville which is in the mountains. I lived in Florida all my life so I had plenty of beach there. We have lots of second homes in our area so that is why I asked. About 3/4 of our subdivision is second homes but we are permanent.

I have the illeal conduit so if you have any questions about it, please ask.
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
The topic has been locked.
14 years 11 months ago #24998 by Stephany
Replied by Stephany on topic Just diagnosed with stage 3 CIS
I am trying to remember that far back, Doug :laugh: I remember that when you are sent home, I believe there are some tubes left, to help with drainage and such, but once that's all done, you forget about them.

Unfortunately, my husband was one of the unlucky bladder cancer patients, and had a metastasis, and died last November. I would like to address some of your questions, however, as I feel an educated patient is a prepared one.

He started out cathing every four hours, or less, but ended up being able to go double that, if he slept really well. His complication was that a ureter was stretched too much during surgery, and closed up, so he had to have it resectioned. This happened while he was on chemo, and so they had to put off the surgery for several months.

All that aside, he was happy with the choice he made, and it was possible to even forget the surgery once in a while (well, I lied.....he did leak, but only if he forgot he was getting full!)

At the end of his life, I would have traded the Indiana pouch for an illieal conduit, but only because he was having other health problems and it would have made it easier in the hospital and home hospice settings to have a bag to change instead of cathing.

Anything else I can answer, just let me know.

Stephany in Iowa
The topic has been locked.
14 years 11 months ago #24997 by Blnmakerr
Replied by Blnmakerr on topic Just diagnosed with stage 3 CIS
Balihigh:
Our second home is in Carolina Shores, NC (just beside Calabash, NC) whch is just two miles from Little River, SC. We are just two miles from the ocean and in a community called The Farm At Brunswick. Not sure where Waynesville is?

Doug
The topic has been locked.
14 years 11 months ago #24996 by balihigh
Replied by balihigh on topic Just diagnosed with stage 3 CIS
Hi Doug,
Just noticed that you have a second home in NC. My husband and I retired to Waynesville in 2001 from Florida. Wondered if you are close by.
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
The topic has been locked.
14 years 11 months ago #24995 by Blnmakerr
Replied by Blnmakerr on topic Just diagnosed with stage 3 CIS
Stephany:
I am 66 years old and prior to a couple weeks ago lead a very active life. I am President of a latex balloon company and drove 75 miles each way to my office.

We have a second home in North Carolina and I golf whenever possible.

My health is good for someone my age. I had my aortic valve replaced at The Cleveland Clinic in September 2007 and at the same time they did a double bypass (saying the valve would probably last 20 years but the coronary arteries would probably not).

I was leaning toward the ileal conduit simply because it is a shorter surgery, less potential for operative and post-op complications and my "internal plumbing" can be left intact.

However I shutter at the thought of wearing a bag (body image I guess) and am trying to find out as much as possible about the Indiana Pouch as it seems to be a good option for me.

May I ask some questions? Did your husband have to return back to the hospital for stent removal and was he cathed leaving the hospital? How often does he have to cath himself? Any problem with infections?

Thank you for your help in preparing me to make these important decisions?

Douglas Kerr
Blnmakerr
The topic has been locked.
14 years 11 months ago #24993 by Stephany
Replied by Stephany on topic Just diagnosed with stage 3 CIS
Welcome, Blnmakerr, to the wonderful world of "but that brings up another question!" You have come to a great site for the questions you are asking. Many on this site will have differing opinions on the surgeries, and you'll get a chance to read about all of them.

My husband had the Indiana pouch, and was very happy with the results of the surgery, once he got past the side effects of the surgery itself. He had several hernias that needed repairing during the initial surgery, so his recovery was a little longer than normal.

However, once he got past that, he was very happy with the surgery results. He was able to return to work, and just cathed himself during the day and night when he felt the pressure of a full bladder. That said, the pressure was different from the pressure you feel at present from a full bladder. It just took educating his body.

He carried the catheters with him. I remember lots of talk on the site about the best way to carry/store catheters, and we came up with some good ideas. As long as you are able to use a fresh catheters every time, you'll avoid problems with infections. His stoma was in his navel, and did not cause problems with his clothing. And there was no leakage, and he could sleep nearly through the night most nights, up until he had other health problems.

I'd be happy to answer any questions you might have about the Indiana pouch. I'll start with some questions for you......How old are you? And how active?

Stephany in Iowa
The topic has been locked.
Moderators: Cynthiaeddieksara.anne