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Indiana or ideal conduit?Need fast feedback!

2 years 3 months ago #56012 by Anne1989
Thank you cynthia and so sorry for late response. I have posted this same post 3x by accident so my apologies. I thank you so much for taking the time to answer so thoughtfully. This seems like a gamble since my mom has the x on her given she is not cookie cutter material for this:
A. She has an artificial aortic heart valve
B. Abdominal STUMP mass (being removed same time)
C. 84 snd 14 percent kidney function
D. 77 a month shy of 78
E. An existing hernia which to me should make sense not to have external due to hernias in same place.
The only thing doc mentioned to me as a complication is this mass snd the fact that she is older and doesnt seem "motivated "
I'm reading some other posts in other forums of people going from conduit to indiana. Csn that be done?

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2 years 3 months ago #56000 by Cynthia

I am not surprised I have never talked to a Urological surgeon who didn’t prefer one diversion over the other. One told me he preferred the conduit due to the fact that the surgery does not take as long as other diversions. One liked it because he felt they had fewer post op complications and fewer UTI’‘s. One told me he did not do The Indiana Pouch because he worried how someone would deal with it as one aged. Stroke, arthritis or anything that effected dexterity could be complicated and a long term indwelling catheter is an infection incubator.

Your post brought up these questions for me.

Will one diversion or the other lengthen time in surgery?And if so since they are also removing an abdominal mass is the time difference significant? (My RC took 8 hrs.).

Do one or the other diversions have a higher rate of complication post surgery?

You mentioned your mothers kidney panel wasn’t the best. So I wonder if he feels one or the other diversions is easier on the kidneys?

I have a navel stoma with an Indiana Pouch and it works well for me. For four or five weeks after surgery I had a tube and catheter bag set up. Once you heal enough they remove the indwelling catheter and I started “training” my pouch. I set an alarm for every two hours for the first week and added a half hour a week and as time went by my pouch now will go from three to five hours between caths depending on how much I drink. When I first started I was given red rubber catheters and I had to clean and dry them after use, I had several UTI’s and was given a prescription for disposable catheter my insurance pays for a portion of the cost. I some times get what is called pouchitis that is the term for when my pouch is not feeling well. At those times it might leak and I will have excessive mucus in my urine. But I have learned to deal with its picadillos and we get along fine. This was my experience but again ask your medical team what to expect.

I do not have a conduit but doing what I do I know a lot of people with them. The biggest issue’s seem to be stoma placement and finding the right appliance. Unless you favor very close fitting clothing that would not be an issue.

There are pros and cons you just have to concentrate on your mothers unique needs as she makes her choice. The good news is that people adapt and do well with all the diversions.

Good luck.

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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2 years 3 months ago #55999 by Anne1989
As you can see as a daughter, I'm still really angry at this doctor and I try not to show in front of my mom. I'm just so mad that I didn't personally know the warning signs sooner. I was to afraid to look them up. Thank you for your responses. This forum makes it all easier.

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2 years 3 months ago #55998 by Anne1989
The doctor didn't really go into detail about it, but did say to rememeber that she does have this added complication etc. It's a mass or neoplasm of uncertain maligiant potential. However, it's big and it needs to come out. It's unrelated and wouldn't have even known it was there if had not been for the CT scan that Nurse practicioner ordered. My mother's Gyno/Uro ignored her concerns for months as she slowly bled. My mother first saw blood in April 2017. Wasn't diagnosed till Sept. The doctor even gave her a business card to return in Sept! This doc looked great on paper and we trusted her. Thank goodness we left that hospital and went straight to MSK!

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2 years 3 months ago #55995 by Alan
That may be the defining part. An abdominal mass could easily preclude using the part of the intestines that they make the pouch out of.

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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2 years 3 months ago #55994 by Anne1989
Thanks Alan. My mother also has an abdominal mass that they are removing same time as RC, so it may complicate things

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