Choosing Between Ileal Conduit and Indiana Pouch for Urostomy

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292
NotDoneYet99
Aug 10, 2025 8:31 pm

Hi, I have a cystectomy with ileal conduit scheduled for 8/19/25, but I just learned about an Indiana Pouch option. I just turned 60 and have always been healthy and active. I found out in March that I have stage 2 MIBC. One of the tumors is in the bladder neck, so a neobladder is not an option. Thoughts? I live near Indianapolis, so I am thinking a robotic cystectomy plus robotic IC might be a great option, but I have to decide this week.

SusanT
Aug 11, 2025 1:45 am

I have a standard ileal conduit as a result of rectal cancer that invaded the bladder and did so much damage that the bladder could not be saved.

I had to look up the Indiana pouch. I assume that was not a possibility for me because of the concerns with the recurrence of the cancer in the colon.

In general, it looks like a much more complicated surgery. But it's a fair choice if you are a candidate.

I can only say that I do not find the ileal conduit to be overly burdensome. It is not nearly as bad as I imagined it would be before I had my surgery.

I'm happy to answer any questions about the ileal conduit. We don't have a lot of people with continent diversions like the Indiana pouch, but maybe someone will speak up.

Posted by: HungryHamster

Hi,

Not blowing my own trumpet or anything, but I was at the healthiest I had ever been prior to getting UC symptoms. I was eating very healthy and exercising 6/7 days. I'd love to know if any lifestyle factors affect UC, but I suppose I'll have to wait until they figure out what causes it.

I've been trying to occupy myself by being in contact with friends often, but some days I am really not in the mood and find it hard to drag my mind away from what ends up being a mountain of thoughts. I suppose it's all part of the learning process and I'm sure it'll happen less with time. This website has been great so far. It's great to be able to write this sort of stuff down and chat with people that understand what's going on. For that, I thank everyone on this website.

Thanks,

Hamish.

Bryce
Aug 11, 2025 6:53 pm

Hi - I was never offered the Indiana Pouch Option, so my comments relate to the Ileal Conduit I received 17 years ago. I was active and in reasonable health, so after the first 3 months post-op, I was fly-fishing in Utah/Montana. The key is a positive mental attitude and getting a reliable supplier - I have had great luck with Coloplast - but there are plenty of good ones around. I had to give up golf (core strength), but I wasn't that good a player anyway. I slowed down a little in the last couple of years, but that has more to do with having both hips replaced from playing 'Boilermaker Ball' at university. I have had a few odor problems and am still active enough to hit Patagonia for trout and New Brunswick for salmon. Whatever you choose..... Good luck!

NotDoneYet99
Aug 11, 2025 11:55 pm

Thanks for your reply. Having a bag seems like it would be such a big change. Good to hear that it becomes manageable.

NotDoneYet99
Aug 11, 2025 11:57 pm

Thanks for the reply. Great to hear that you've continued to be so active. Hoping it can be that way for me as well.

 

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