Just diagnosed with stage 3 CIS

14 years 11 months ago #25008 by Stephany
Replied by Stephany on topic Just diagnosed with stage 3 CIS
Yes, it was funny after the fact. These navel stomas are a surprise to many of the staff in the hospitals. One story is not for now, but another one still makes me smile.

My husband was rather weak from an infection, and the nurse came in to cath him. Luckily, I was there, so that when she lifted up the sheet and reached for his penis, I was able to speak out, in a "perky sweet" voice, and tell her that his stoma was in his navel, and that she wouldn't get much from THAT.

I don't know who was more surprised, the nurse or my husband, but she did get the idea, and got the job done.

That idea of the circle around the navel is a GREAT idea, Pat. I wonder why I didn't think of that.

Whatever decision you make, Doug....just make sure you feel that you have all the information you need. Getting past the diagnosis is already a big hurdle. Give yourself some time with that, and then deal with the method after you have the time to ask all your questions.

And another point....if at some time during the recovery period you feel that you are not getting enough sleep, it is possible to place a catheter in the stoma, and leave it there for several hours, taped in place, attached to a night bag.

Stephany in Iowa
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14 years 11 months ago #25007 by Patricia
Replied by Patricia on topic Just diagnosed with stage 3 CIS
Doug......the tests are only as good as the person giving them and the pathologist who reads them.......see
www.aruplab.com/guides/ug/tests/8100600.jsp
If the Cleveland Clinic says you have CIS invasive i would tend to believe their pathologists. They have some of the best in the country.
As for the stoma for an Indiana Pouch...and mine is right where my navel was and looks exactly like a navel size wise and all except that it is red and trust me its of continual interest to all around here..doctors and nurses alike as they've never seen one before. Hard to believe huh. They don't know how to do them here. So i always carry a paper around with me which states what i have and where the stoma is located. If i ever had to go into the hospital i would draw a bullseye around my stoma with an arrow and instructions to "cath here".....Stephanie can tell you a funny story...well sort of funny if its not you.
I'm just glad you're at the right place to be right now.
Pat
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14 years 11 months ago #25006 by Blnmakerr
Replied by Blnmakerr on topic Just diagnosed with stage 3 CIS
Balihigh:
Thank you so much for that information. It is good to know that the YouTube video is NOT an accurate depiction of a stoma's length.

I hope to hear from Dr. Eric Klein, the Head of the Urology Dept. at The Cleveland Clinic tomorrow with his second opinion of my case and the proposed surgeries (total removal of the bladder and prostate).

I asked for a second opinion because there were so many conflicting tests results in my case. First of all there were NO cancer cells found in my first urinalysis and my FISH test was negative for cancer. A month ago our local urologist found the suspicious spot in my bladder and took two biopsies. They also were negative for cancer.

All I can do is hope for the best and seek out the best surgeon at The Cleveland Clinic should the second opinion agree with the first diagnosis.

Thank you again,
Doug
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14 years 11 months ago #25005 by balihigh
Replied by balihigh on topic Just diagnosed with stage 3 CIS
Yes, I have seen that video and it is NOT what my stoma is like. That scares everyone to death. My stoma is maybe an inch or a little more and it is actually larger than most. I think it is rather intersting to watch. It does move around and will squirt out urine every now and then. There is no feeling in the stoma itself. It is best to change your bag before you have had much to drink.

The night bag is the most wonderful part to me. You just plug it on the end of your regular bag and you can sleep all night. It had been so many years since I was able to sleep without getting up several times that this alone is worth the bag to me. Of course, as I said before, everyone has their own priorities and preferences. What maybe right for me, might be unacceptable to you. It is good that there are choices for most people at least. There is also a leg bag that can extend your daytime hours. When I was on my trip to India in February, I couldn't have done without it. Sometimes we would go 5 hours without a bathroom stop. That is a third world country and unusual circumstances.

You can also empty in unusual places. We were caught up in a cab in NYC on the way to my doctor's appointment. I went to Sloan Kettering for my surgery. It was UN Day and many of the main roads were blocked off. What should have been a 30 ride turned into more than 2 hours. I just used an empty water bottle and took care of my business. No one knew not even the cab driver.

Please don't let that video turn you away-other reasons, yes, but not the video.
Balihigh

female 60
1/08 dx 4 tumors TURB
T1 G3
12 BCG + interferon
5/08 another tumor/TURB
9/08 RC illieal conduit
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14 years 11 months ago #25004 by Blnmakerr
Replied by Blnmakerr on topic Just diagnosed with stage 3 CIS
Balihigh:
How do you handle nightime? I have read about the night bags that basically drain from the bag you are wearing....I am concerned because I have seen videos on youTube of a man changing his ileal bag and his stoma is several inches long.

I don't know how to deal with that!

Doug
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14 years 11 months ago #25003 by Blnmakerr
Replied by Blnmakerr on topic Just diagnosed with stage 3 CIS
Stephany:
Thank you for sharing the information on your husband's Indiana pouch; it will help me to make the "right" choice. So sorry your husband has passed, please accept my sympathies.

Doug
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