Indiana Pouch - Leaking

formercakid · Post by **formercakid** » 2007-07-03 22:36:13

I am almost 9 months post surgery with an Indiana Pouch. I have progressively increased my voiding time, and am currently at 4 hours and 10 minutes. I continue to keep a voiding log as a point of reference. Initially I experienced leaking, which lessened with time, but in the past 12 to 15 days I seem to be experiencing an increase in leakage (4 -6 times per day). I've read that it can take a year before the pouch stabilizes and doesn't leak. Both before and after surgery my doctor assured me that leaking does not occur with the Indiana Pouch. On my last visit, he assured me that I am doing fine and healing well, but I am still leaking. He also told me that eventually I should only need to void every 5 - 6 hours. The situation is very stressful because the leaks are random. I'm feeling well, no infections or fevers. I've asked the doctor about irrigating the pouch, and he says it's not necessary. I've noticed that fatigue, stress and physical activity may trigger a leak. Any feedback would be much appreciated.

Lynne · Post by **Lynne** » 2007-07-04 09:03:08

There are a few folks here with Indiana Pouches, so I'm sure someone will be replying to your post soon.

sb · Post by sb » 2007-07-04 11:15:52

I was told to irrigate. For the first years I had tons of mucous. Over time the mucous became less and I irrigated less. Now I irrigate rarely (it's been 16 years). I know that I should irrigate more that I do and if I do leak it is because I have a piece of mucous that is ejected from the stoma, however this is infrequent.

What does your urine look like -- it is clear or is it full of mucous? Perhaps your pouch is different from mine (a different part of the intestine?), but I know that were I to not have irrigated the first years my bladder would be full of mucous.

Has anyone else here been told to not irrigate?

Maybe you should as your physician why he doesn't suggest you irrigate. I'm curious what his answer is.

jpotts · Post by **jpotts** » 2007-07-04 11:45:42

I believe irrigation is truly the answer here. I got very bad about not irrigating (or flushing) because it just became a pain in the tookas. However, with the last infection I had, my doc put me on a "topical" antibiotic where I have to insert a mix of saline and neosporin into my pouch via my cathetar. Rule one, flush first. Since I have started flushing my leaking and infections have decreased TREMENDOUSLY. I have been out of action the past 5-6 days with a back injury and again had not been able to flush. Within 3 days of not flushing, leaks ran rampant. I have also learned to listen to my pouch and can actually feel the difference between when I have not been flushing (lots of trapped mucous) and when I do (much cleaner urine)
I am by no means saying this will resolve all your issues, however, I do believe it will decrease significantly. Of course keep in contact with your doctor to let him know what is going on.
Another difference I noticed is with what I am drinking. When I limit myself to 2 non water drinks (soda, juice, alcohol whatever) and drink water regularly my mucous is thinner and therefore leak less.
I am just over one year post op and generally go 6-7 hours without voiding and can go all night. Please try the irrigation/flushing and see if that makes a difference!!! Good luck and please post to let us know how you are doing!

formercakid · Post by **formercakid** » 2007-07-04 12:34:18

Thank you for the replies.

Regarding the question concerning my urine - lately on most occasions my urine is very mucousy, kinda soupy flow out of the catheter. I notice that the pouch seems to go through a period of time (6 or 7 days) where it produces more mucous than normal.

Drinking only pure water versus soft drinks or juice definately seems to make a difference.

I will be talking to my Doctor's assistant next week and will ask about the irrigation.

I had my surgery at Cornell/New York Presbyterian, done by Dr. Douglas Scherr (highly recommended and I trust him). Part of my ilium was used to construct my pouch. I had carcinoma in situ which was difuse in my bladder and became highly aggressive and was BCG resistent. I was going to get a neo-bladder but in 2005 I had prostate cancer and had my prostate removed by a different urologist and had recurring urethra stricture problems so my current doctor did not feel I was a good candidate for the neo-bladder. I had no followup therapies after prostate removal cause the cancer was contained within the prostate. My PSA's continue to be zero, going on two years now. Also, I had no followup therapies after bladder removal because cancer had not spread to the muscle layer and was confined to the bladder but was abutting the muscle. I am really doing fantastic with the exception of this intermittent pouch leaking issue.

I wish you all a happy 4th of July! Will continue to post progress. Hearing from you folks that have the Indiana pouch really helps.

Rich...........

squid56 · Post by **squid56** » 2007-07-04 14:22:24

Hi Rich and welcome to the board

!
My pouch is now almost 16 years old. Irrigating is really important, so do ask the at the doctors office next week. Peoplle will leak more if there is a build up of mucus inside. Also keep drinking LOTS of water. Some pouches do leak, mine always has and sometimes it is worse than others. Over the years I have tried antispamodics for it and they seem to help. Some work better than others, but as you said it really takes a full year for the pouch to settle down. It is disconcerting though when you spring a leak, especially at work

. I have learned to compensate for it. I always shirts that go over where my stoma is so if I do leak, it can not be noticed and I always have extra coverings with me. When I first had mine done I leaked a lot, now when I do leak it is not too bad. I hope that with time yours stops leaking all together! Judith

formercakid · Post by **formercakid** » 2007-07-09 12:56:00

I talked to my Doctor and he now recommends that I irrigate once to twice a day. I have started irrigating but I will be talking to my doctor's assistent tomorrow to ensure I am following the proper irrigating technique. Since I have been irrigating I seem to have had less incidents of leaking, although today I had a couple of bad ones.