Indiana pouch leakage options--question

I've had some times when I drained and sprung a leak an hour later--I get it, for sure. While I'm trying to resolve the frequent leak issue, at least I've managed a way to avoid the constant clothing and linen changes, and for that, I'm thankful.

Your surgery differed from mine. I had no lymph node involvement or any accessory involvement--thank God--so my lymph nodes weren't touched. However, the appendix pretty much always goes with abdominal surgery these days, and my surgeon routinely takes all the female organs when he does an Indiana pouch--and that's okay--mine were post-menopausal anyway; I don't miss a thing. So I lost ovaries, fallopian tubes, uterus, cervix, and most of the vagina--plus bladder and urethra. Like you, bowel parts used to construct the IP and "channel."

I sometimes wonder if this "detubularization" they do to the bowel parts used for the IP and channel doesn't always work--or if the pouch sometimes just does not grow. As I understand the surgical report, they detubularize the bowel segment--they slice it longwise like you'd do a hot dog to put in on bread--and then make the pouch by sewing it up the opposite way--supposedly, this process reduces the natural tendency of the bowel to contract.

I also read on some site somewhere that this bowel segment tends to try to push out the mucus--odd, really, since it produces that mucus in the first place--and that mucus-push can cause urine leaks that would not occur otherwise. So of course I've tried to cut down the mucus as much as possible, but I really don't seem to get that much anyway except in the morning and late in the evening.

One of my nurses said that if I can't manage to drink 64 plus ounces a day, just irrigate more often to break up the mucus. I don't know...it seems like the more times we enter that pouch means the more times we open it up for potential infection. And that may be why the surgeons want us to "grow" the pouch. If I think about it, I NEVER EVER went four, five, six hours pre-surgery without peeing--except at night while asleep. How many of us did wait that long? I imagine almost none. So it shouldn't be a big issue to void every three hours or so with a pouch. But the inadvertent voiding--the leaking--that's not cool.

The output is with fluid. I had 3 years if UTIs before the RC so my "normal" was lots of water. I'm trying to ween down, but you know how that goes.

I had the pain pump, and thank you for that. one bladder, one appendix, one ovary and 27 lymph nodes removed, plus the "recycling" of parts for the IP and stoma. My stoma is at my belly button (originally thought that this was a sick joke by all male surgeons, but it actually works pretty well there).

My big wrench in recovery was the cute little phys. therapy girls (they looked about 12 years old I swear), thinking I could just jump out of bed and skip down the hall...

This is the first I've heard that my output may be higer than usual? Drained the IP at 5 pm and at 6pm had a leak (full clothes change too). This is not my usual schedule. I have found that if I back off too much on water, I get thicker output and more mucus, so I haven't found happy medium yet.

That was an excellent read. Thanks, Pat!

. I had no "No Visitor" signs--I signed legal a non-disclosure.
I did not want any visitors, and had none. My surgery was not done in my hometown anyway, so visiting would have been a hardship on people, and frankly--what could they do for me. My daughter took me to the hospital, stayed till surgery was over, and went back home; at my request, she did NOT come to recovery or to the room. I talked to her everyday, and she came and got me when I was released. I never had a stint in ICU, thankfully--went right to a regular room with no NG tube, but still, I had to heal, get bowel sounds back, learn what to do with my new anatomy--walk--and get OFF that pain med pump. Worst thing in the world--for me, anyway. I never really had anything excruciating as far as pain goes, but I just kept following nurses' advice and pushing that stupid button for a day and a half. The first time they wanted me up to walk, I felt faint AND the worst nausea of my life. I could do noting but sit still with my eyes closed. That ended the dilaudid drip, and I never needed anything other than a plain Tylenol.

200-33 cc every two hours seems like a lot. That means your kidneys are putting out that much--right?--so we're looking at a rate of 100 ccs per hour. Is that WITH fluid intake or with none? I thought the average rate with no fluid intake was 50-70 cc per hour.

I have been getting between 200-300 cc every two hours!! It seems OK, and I don't have any other problems. I'm thinking I need to get back to a rigid schedule. My alarm clock has two alarms, but I'm investigating kitchen timers (and won't that be something to look forward to at 3 AM!). Some good ones on the market are reasonalbe $$ and can go from seconds to 99 hours. One even starts a clock when the alarm sounds and then counts the time past the alarm. Might be good for "stretching". I keep thinking about the leaking and I keep coming back to the scenario of two guys from the DPW, (talking with NY accents) "Hey, Joey, let's show her who's in charge. She's not in charge - let 'er rip!!!"(begin leaking) (My husband says I have a sick sense of humor - I thought it was funnny... oh well.)

I had the opposite of you with regard to imforming people. My MIL decided that everyone I know and everyone she knows needed to be in the loop and visit me in the hospital! I had great nurses and they were happy to put up the DND/No visitors signs for me. I even had the minister of a church one of MILs friends goes to try to visit me on day 2 in ICU! I did'nt know him, so had the nurse send him on his way. No one should ever be held accountable while under pain meds.

I do hope you have some close people who can be there for you in a pinch.

Hi, Pat.
So many have navel stomas. Mine is lower right, and I think I'm glad, really, that it is not in the navel. That would have been right at the waistband for me; not everything I wear is modern or low waisted, and there are more things in my wardrobe than not that fall at the regular waistline. However, the location DOES make dressing attachment something more of a challenge, especially when I get skin reactions to things. Am Patches are the most comfortable of all, but after a few changes, I start getting a red outline of the patch--plus, they don't hold for a sudden or forceful leak. Micropore tape does the same thing--yes, I have a latex allergy.

Fortunately, until and unless I can get the leaking issue cleared up, I have NOT had any adverse skin reaction to skin prep wipes or to the Convatec Little Ones pediatric stomahesive flange/barriers to which I attach a 5-inch pediatric drainable urostomy bag. I am hoping hoping hoping to be able to forgo this routine someday, but hey--at least for now, it's saved me. I can work, sleep, workout--etc.

First post-op CT scan results back today. Everything is clear, and nothing mentioned about any fistula. Yes!