Indiana pouch leakage options--question

Hi to all the Indiana Pouch Gals
I am 4 months out from my RC and also have problems with leaking and pouch pains.
I can also have leaking even after 1 or 2 hrs after cathing. Unfortunalty I must take Bactrim DS and then the leaking problems improves. My internist will start weaning me off in the next few weeks. I cath between 2 1/2 and 3 hrs day and night. I irrigate with saline twice a day (60 cc each time) I am going to ask my Surgeon about the amount my pouch should hold. I void about 200-350 cc during the day but at night I void from 300-650cc.(lots of urine at night) I was never told how much my pouch should hold.
Cynthia mentioned tena night guards THESE ARE GREAT!!!
I have tried everything baby cloth diapers, kotex, panty liners, stoma covers TENA IS THE BEST!!!these are alittle bulky but they soak up the big leaks!! I wear one everyday. and at night I wear tena night guard and a tri folded cloth diaper laid like a strip of cloth below the guard this has stopped all major leaks in the bed.
I am now on a month long trip in florida. I just was in Atlanta,
Jacksonville FL and St augustine FL now on to Sarasota and Naples. We have a minivan loaded with catheters and night guards it is quite the site(LOL) Life is good even with the leaks and occasional pouch pains I feel like I have my old self back and for this I am GRATEFUL!!!
Love to all
Julie

Hi, Sandie.
Three weeks out--how are you doing?

I just had the Indiana pouch surgery 3 weeks ago, so I can't really address the leakage issue except to say this: My surgeon, Dr. Steven Campbell at Cleveland Clinic, told me prior to the surgery that the ileocecal valve (used to make the pouch continent) just doesn't work right in 1-2% of women. I hope this is not the case for either of you having issues and I hope it's not the case for me down the road!

Pat and Lynda--

I re-use catheters. As often as I need to cath to avoid geisers, 200 a month would not do it. If I have to cath ten times in a day, the math says it all--that's 300 a month. I have also found that because I can't use latex red rubber catheters, mine cost more WITH insurance covering PART of the cost than if I order from Allegro medical and pay the full cost myself. Crazy.

I wash and rinse mine with anti-bacterial soap and water after each use and then store in 70% alcohol until the next use, and I rinse and clean with that same soap before using the alcohol-soaked/submerged ones. No, I'm not getting alcohol in the pouch or on the stoma. I clean the stoma opening with BZK (not alcohol) pad before and after cathing. These pads come individually wrapped.

Let me clarify. Some nodes were taken out to test in pathology, but they were clean, and so a large bunch of nodes being removed was not part of my surgery. No radiation, no chemo--surgeon felt it was not called for based on pathology.

Wish I could be out of the bathroom in three minutes! I don't get mucus clogs blocking the catheter, but I guess what I still get are spasms--I insert, get a good drain going, and then everything stops--clamps off. I move around, use a little gentle pressure on the abdominal area, pull out and get some more clear drainage. I reinsert two more times and always get some more clear drainage. Anyway, it's always a good 12-15 minutes per trip before I feel I'm well enough drained, Because there are some occasion out and about when this timeframe isn't feasible, I tend to time my fluid intake and drain schedule around my prospective "away from home" time. For example, my job entails working from home seven days a week, but I work AWAY from home four hours a week--on Mondays. I cath about twenty minutes before leaving for work. Because I really can't take two fifteen-minute potty breaks in that four-hour shift, I tend to drink nothing at all prior to going to work and nothing AT work--then I can get by with cathing just once while at work and not leaking. Now, if I have to do any running around after work, I cath again right after I clock out but won't drink anything till I get home, whenever that is. I do pretty much the same type of thing if I have a lodge meeting. I have to run the meeting and can't up and leave if I spring a leak or just feel "full" during the meeting. So--no fluids before going to a meeting. Also no fluids before going to workout--really un-cool to have to stop in the middle of aerobics to go potty--right when the aerobics lady is telling us "don't stop the routine and sit down right away!"

J..what do you mean they didn't take any lymph nodes out? aargh!
look at the discharge summary again. I've never heard of a surgeon who does not take lymph nodes at cystectomy.
Anyway ladies..be patient. Don't drink so much.....your baby bladder is like a new baby and frequently burps....mucus will thin out like egg nog soup in short order. It takes longer for some..but the natural tendency is to push it out. Talk gently to it......or you can actually swear at it as i did. I eventally had to let "Hal" know who was boss.
Hope some of the other gals will come on that have Indiana's.
Pat
PS...since Medicare has allowed 200 catheters a month...good, reputable insurance companies are also allowing 200 for those under medicare age. You just need a script from your doctor stating what you have and how many caths you need. I never have re-used and i've never had a UTI in 8 yrs and i'm out of the bathroom in 3 mins!
PSS..this is the letter from Medicare that gives you leverage on catheters and not re-using
www.bladdercancersupport.org/su/forum/16-american-bladder-cancer-society-news-and-updates/21837-a-letter-to-mds-regarding-catheters

My cancer was non-invasive, but almost invasive (another week and the Dr said we'd have had trouble). Lymph nodes were taken for biopsy only and all clear! YEAH!!

I agree with you on the time between cathing. I didn't go for 4-6 hours when "originally normal", so I'm not really minding every 2 hours (most of the time), 3-4 hours would be nice tho.

Since our "systems" are clean now vs. sterile, I do reuse cahteters, but clean them after every use (antibacterial soap and water) and start with new ones at the beginning of each month.

This kind of leaking has happened before and I need to get strict with my schedule and watch what I eat and drink. Hopefully this will pass. Last week I was up to 3+ hours between bathroom breaks and dry between ( even at night).

Knowing that there is a better side keeps me going most of the time. I will admit to a pity party once in a while. A wise woman told me I could have pity parties as long as I didn;t become a party planner!!