Indiana pouch and excessive urine output

[Carole]

I have had an Indiana pouch for about 15 years. It was originally put in because I had both acute interstitial cystitis and bladder cancer. (I was 30 years old at the time.) I have had several surgical revisions to the pouch because it was leaking, and it still is. I am now having trouble with polyuria (excessive urine output.) Polyuria is defined by producing 3,000 cc of urine a day or more. I need to empty my pouch about every hour (I feel pressure to empty it and it HURTS and PRESSES and gets increasingly worse until I do.)

I have seen a kidney specialist and she performed all kinds of tests. They have determined that there has been some damage to the tubules in my kidneys. However, the doctor feels that there is nothing that can be done to treat it, or even to prevent it. I have an appointment with another kidney doctor for a second opinion on Dec. 18.

Is anyone else with an Indiana pouch experiencing polyuria? And, if so, is there anything that helps?

[squid56]

I too have an Indiana Pouch due to IC.I was also 30 when I had my bladder out. My pouch is over 16 yrs.old and it leaks too, but not all the time. I found out last year that I had IBS in my pouch so it goes into spasm and leaks. I started off with the ileal conduit, but after 6 years of many problems, infections, revisions etc, I switched over to the pouch. For me it is much better, even if it does leak at times.
I am sorry that you are having to cath every hour, I hope they can figure a way to help you. Have you thought about just putting a Foley catheter in, leave it there and hook yourself up to a leg bag?
How much does your pouch hold? I have to take diuretics so I know about the pressure and peeing large amounts!

[Carole]

Thanks for taking the time to reply. Wow -- another person who had his or her bladder out at 30 years of age! So there are at least two of us on the planet.

I am not sure if my pouch leaks from spasms or not; there is also a problem with the continent value.

I have thought about putting a catheter in and using a leg bag -- but I make sooooo much urine, I am afraid that the leg bag would be bulging full all the time. But I will discuss this with the doctor that I am seeking a second opinion from. There are no options that I am not considering.

Again, I thank you for your suggestion and your response. I don't feel quite so lonely and alone with the problem any more -- although I am certainly sorry to learn that you, too, have had a number of problems with your continent diversion.

[squid56]

I am glad you dont feel so alone now . Even though I have some problems I still would much rather deal with them than having my bladder back. That as you know is a nightmare! I wonder if they wil give you the option of going to the ileal conduit? If they do, ask about what will happen with your kidney function, since an ileal conduit has reflux to the kidneys, the pouch does not. Let me know,okay? Good luck at the doctors!