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  • Indiana pouch leakage options–question

    Posted by 1jungroth on February 27, 2011 at 1:25 am

    Greetings.
    New here. Received my Indiana pouch at IU Med Center (Indiana) in July 2010–over 7 months ago. So here’s my issue.

    Despite all the “training” over these past 7 months, my pouch still won’t hold more than three hours–less if fluid intake is up. In order to ever sleep more than three hours in a row, I’ve taken to using a pediatric flange and tiny urostomy bag at night; lately, I’ve tended to use that flange and little drainable bag almost all the time. Why? So I don’t leak at work–so I don’t leak while exercising–so I don’t leak at night–etc., etc. I’ve used all manner of pads, dressings, bandaids, AmPatches,–none of them will hold the leaks. When the urine comes, it’s always more than any sort of dressing can handle–or the leak comes at a time when I can’t just get up and go to the restroom. At least, with the pediatric urostomy bag, any leakage goes into that drainable pouch and not onto underwear, clothes, etc.

    Trust me–I’m thrilled the Indiana pouch option was available for the cancer; I don’t mean to come across as ungrateful or too complaintive. But it is so frustrating to still be having this leak issue and to resort to using urostomy bags in order to make sure the leaks don’t get out of control.

    So–my question–is there ANY other method or idea I can try? Given that this particular surgery was meant to avoid using an appliance, it would be nice not to have to use one. :)

    mamatrausch replied 13 years, 11 months ago 6 Members · 26 Replies
  • 26 Replies
  • mamatrausch's avatar

    mamatrausch

    Member
    March 6, 2011 at 8:40 pm

    Hi
    Sorry the pads are called Tena MEN guards. I also have used crib pads for my bed at night. I am currently using a $5.00 oil cloth table cloth from walmart. It fits great under my mattress pad and protects the whole bed. No shifting around and it lets me sleep anywhere on our king bed. Put the flannel side down on matress and plastic side up. Like I said we are traveling and I bring this tablecloth along. I also am so grateful for this site it has helped me get through so much. Lots of smart people on here with lots of great ideas.
    Julie


    T1/G3-CIS 10-01-2010
    10-27-2010-Indiana Pouch
  • lynda's avatar

    lynda

    Member
    March 6, 2011 at 7:45 pm

    Thanks Patricia! I never thought I’d have these issues, but it sure beats cancer by a mile. I did have OJ this morning (LOVE the stuff) so we’ll see what happens tonight.

    FYI – for nighttime I have a couple of pads that you’d use for a childs bed when they are potty training. It keeps my bedding clean and I can easily change it if I have a leak and not wake my husband. Also use a tena pad stuck to a folded hand towel across my stoma to catch leaks(tucked in underwear). (daytime is a nursing pad and micropore tape)

    It’s amazing how inventive you have to be to outsmart Ms. Leaky :P

    Lynda


    Lynda

    3 years UTIs
    Indiana Pouch – July 2010
    Pulmonary Met. – May 2011
    Chemo started June 2011

  • 's avatar

    Guest
    March 6, 2011 at 7:21 pm

    Good for you Linda..i always tell people to make a list of what they’re eating or drinking and see if it coincides with pouch irritation and its different with everyone it seems. Mine would spit with dairy..especially ice cream….made lots of mucus…but over time it does get used to it if added in small amounts. I can’t drink orange juice at all either to this day.
    pat

  • lynda's avatar

    lynda

    Member
    March 6, 2011 at 7:17 pm

    hi Sandie! Been thinking about you and glad to hear that you’re on the mend.

    My leaking is getting better. I’ve done some “experimenting” and found that I may have a Indiana pouch sensitivity to citrus and carbonation (orange juice and soda). So I’ve cut out both and what do you know, back to 2 1/2 to 3 hours between bathroom breaks! And if I drink water with dinner and cut out liquids by 8pm I have a much better night. (Went last night for 5 HOURS!!!! Yippee!) So the “experiment” goes on…

    Lynda


    Lynda

    3 years UTIs
    Indiana Pouch – July 2010
    Pulmonary Met. – May 2011
    Chemo started June 2011

  • 1jungroth's avatar

    1jungroth

    Member
    March 6, 2011 at 6:17 pm

    Amazing! Just goes to show how much difference there is among surgeons.

    My in-pouch foley was removed on day five after surgery; I went home on day 6 with a malecot tube connected to a bag (interestingly, this never leaked or plugged up). On day 17, after an IVP, the malecot tube was removed and I had cath training in the office. Started right then on the “training schedule.”

  • Sandie's avatar

    Sandie

    Member
    March 6, 2011 at 3:36 pm

    I am 3 weeks and 2 days out from surgery and doing surprisingly well. The nausea and bowel issues seem to have calmed down so I can eat (hooray). I’m walking around, doing some light physical therapy exercises. I’ve had a lot of household help and support. The pouch is draining into a bag through the cecotomy tube and the stoma in my navel has a foley (I think) which is capped. Four times this week the cecotomy tube has plugged with mucus and the urine started leaking out the stoma. But it hasn’t happened in 3 days now. But I’m going to pick up some of those Tena night guard pads!! What a great forum….so helpful to people like me who need to know what to expect and how to deal with things. March 14 is my next appt when, if all looks well, I may start cathing. I am enjoying my sleep now while I can!!

  • mamatrausch's avatar

    mamatrausch

    Member
    March 6, 2011 at 2:33 pm

    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


    T1/G3-CIS 10-01-2010
    10-27-2010-Indiana Pouch
  • 1jungroth's avatar

    1jungroth

    Member
    March 5, 2011 at 1:58 pm

    Hi, Sandie.
    Three weeks out–how are you doing? :)

  • Sandie's avatar

    Sandie

    Member
    March 5, 2011 at 12:27 pm

    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!

  • 1jungroth's avatar

    1jungroth

    Member
    February 28, 2011 at 11:32 pm

    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!”:)

  • 's avatar

    Guest
    February 28, 2011 at 11:01 pm

    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
    http://www.bladdercancersupport.org/su/forum/16-american-bladder-cancer-society-news-and-updates/21837-a-letter-to-mds-regarding-catheters

  • lynda's avatar

    lynda

    Member
    February 28, 2011 at 10:58 pm

    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!!


    Lynda

    3 years UTIs
    Indiana Pouch – July 2010
    Pulmonary Met. – May 2011
    Chemo started June 2011

  • 1jungroth's avatar

    1jungroth

    Member
    February 28, 2011 at 10:39 pm

    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.

  • lynda's avatar

    lynda

    Member
    February 28, 2011 at 10:13 pm

    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.


    Lynda

    3 years UTIs
    Indiana Pouch – July 2010
    Pulmonary Met. – May 2011
    Chemo started June 2011

  • 1jungroth's avatar

    1jungroth

    Member
    February 28, 2011 at 9:33 pm

    That was an excellent read. Thanks, Pat!

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