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Indiana pouch leakage options–question
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:). 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.
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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.
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011
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!
Hi, Cynthia.
Actually, I don’t recall seeing any pop-up, but it’s no real issue. I did a check on my profile and could see THERE that I had made one post–but then I cold not find the post. At any rate, it’s all visible now, and that’s what counts,Thanks so much for all the advice. I’ve been lurking around this site and a couple of others since my surgery. Almost no one around me knows I even had this surgery done–(3 people, to be exact–not counting medical personnel involved, of course)–I did not want (and still do not want) the constant questions, the looks, etc. Most people know I had female surgery–they just don’t know I had a couple of extra items removed and a couple new ones “sewn in.”
So my point is that I’ve learned a lot by lurking here and elsewhere and faintly decided to register so I could actually talk to some people.
I chuckled at your list of possible causes of pouchitis. Chocolate, if I’m not trying to lose a couple of pounds, is always high on my list of favorites. And caffeine–I ad gone completely decaf with my coffee a couple of years ago. Once my cancer was diagnosed, I even stopped decaf coffee and went with Pero coffee substitute, along with other changes meant to make my urine more alkaline. Now, of course, with the Indiana, I’m told that more acidic urine is better, so I’m back with the regular coffee–limited use.
Piggy-back anytime! :)
I went through a period when I faced that Sahara in the evening. I started chewing extremely citrus-y gum in the evenings, and after awhile, the thirst seemed to abate quite a bit, especially if I had enough fluid during the day.
I completely sympathize with the night-time bedclothes and nightgown changes–that’s the first thing that made me start using a stick-on urostomy bag at night. I still had to get up and cath, but at least the leakage I experienced was contained within that little bag and did not drench me. At this point, I feel comfortable sleeping six hours with that bag in place, and in the morning, it’s got about 50 cc or so in it–the rest I drain out. So I figure okay–that’s 50cc in the bag and then about 250-300 drained with the cath–a capacity of about 300 max before leaking starts.
Maybe this will get better; everyone here says that a 7-month old pouch is still “new.” And I’m totally grateful that I found the little pouches and can use them rather than get drenched. It just would be nice NOT to have to go to that extreme since it halfway defeats the purpose of a continent reservoir operation.
My surgeon said a foley COULD be used on a short-term basis, so I considered a foley–but they are so large if you get one that has a lumen size to handle the mucus, and there is debate on whether or not they contribute to infection if used for very long, though I had one for three months prior to my surgery (not the same catheter, though–there were changes due to biopsies, and then I had BCG and went on intermittent cath for awhile). I think also that the balloon that anchors a foley cannot possibly be good to have resting on the pouch/stoma inner connection. The other thing about trying a catheter is that wouldn’t it likely leak around that tube, too? And with almost any stoma location, I can’t see managing a connection to a collecting bag–especially if it were used anytime other than at night.
First off you should have gotten a popup when you posted telling you that your post would appear once a moderator had approved it. We have had to implement this policy due to the fact that we have gotten so many spammers. It is only for your first post and after that you should be able to post instantly. Could you please clink in the main menu on Contact us and let us know what you saw when you posted the first time please?
Many things can be going on if you have leakage. For some the answer has been multi layered. Check any of our suggestion out with your doctor as we do not know of any of your conditions that may be counter indicative to what worked for us.
Try going back to the beginning with training. Buy a few cheap alarm clocks and set them for every hour and a half for the first week. Then go to two for week two and three for week three and four for week four. Watch what you drink at night I used to always drink a cup of tea before bed in my favorite LARGE mug, not a good idea as we produce more urine at night to begin with. Drink when you are thirsty in the evening but do not push fluids. Follow the same daytime schedule’s you are at night.
I was told that the Indiana pouch should not hold over 400cc and never over 500cc Pat’s Urologist told her more but mine would have a heart attack if I stretched mine to that extent. Talk to your Urologist about what he feels should be your top capacity.
You may also have what is I call Pouchitis. That is when the pouch become irritated, this can happen for a variety of reasons and in some cases is only the trigger for that person. Some reasons for Pouchitis can be….
Infection
Food or food additives
Caffeine
Chocolate
Medications
Anything could adversely affect or stimulate your intestines
Some people have found that keeping a food diary helps. Some have had to go back to a very basic diet and add things one at a time to see what is the problem.
I use a product for leaks that was developed for incontinence in males. They are made by Tena and are called male guards. I am able to put them in the front of my undies as my stoma is in my naval you might need to tape them in place but they are very good at catching the rush that can happen.
Once you have Pouchitis it can take a while for it to settle down so it can take some patience.
Hope this helps please keep us updated
Cynthia Kinsella
T2 g3 CIS 8/04
Clinical Trial
Chemotherapy & Radiation 10/04-12/04
Chemotherapy 3/05-5/05
BCG 9/05-1-06
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer SocietyOK.thats what i thought. Listen to the doctor. The nurses are over zealous. Try drinking only when you’re thirsty. if you are getting 300cc’s at 2 hrs thats about a right capacity for 7 months and your bladder should be emptied. But i get that at 4 to 5 hrs. I’m over 8 yrs out with an Indiana. I have a navel stoma. If your stoma is lower you can try a thin maxi-pad stuck to your underwear..perhaps Spanx type pants that stay in place. I know some who do this.
Being thirsty in the evening is pretty common and i also did the same thing and had to get up at 4 hrs to cath for about 8 months but the thirst began to subside after that. I do keep a glass of water by the bed and take sips if i get thirsty but it really doesn’t happen anymore.
There are some tricks to dislodge mucus..one is to cough when the cath is in…another is to move the cath around gently back and forth to find the little pockets it seems to hid in. I don’t have to do this all the time but certain foods will produce more mucus even now for me…dairy is my culprit. Yours might be something else. It takes a while for the pouch to accept that it is now a bladder so whatever upsets your bowels you can be sure your new bladder will also react. It will come around however. I’ve actually found muscles in my abdomen which i can contract to push more out but that might work more with the navel stoma?
The doc is right in his advise.
pat
OK, I’m with 1jungroth, its been about 8 months post-op and I am having recent MAJOR leaking at night and am getting up every 1.5 to 2 hours and I’m soaked!! What am I doing wrong? I try to watch what I’m drinking, but like Pavlovs dog, once I get to the time in the evening when I should be cutting back on fluids, I feel like I just ran a marathon thru the Sahara!! The last three nights have been multiple nightgown changes and pad changes (I use a depends style pad just in case….) I am also irrigating at night and getting at least the same amount out that I put in soI’m not sure whats going on. My output during the day is also down with leaking between.
I had my surgery in Grand Rapids MI and am really happy with everything as a whole, but getting thru the night would be a Godsend.
I know that the Experts out there can come up with a solution. Everyone has heros they look up to, mine are here (except for my mom). I hope I can help someone someday, like the people here have helped me. Thank YOU!!!!
Thanks 1jungroth, for letting me piggy back on your post.
Lynda3 years UTIs
Indiana Pouch – July 2010
Pulmonary Met. – May 2011
Chemo started June 2011
Hello!
Good to meet you, and thanks for the response. I wasn’t sure my post was actually “out there” since I could not see it anywhere as of yesterday.You mentioned the mucus–that amount varies. More right at first in the morning and then later in the evening when I cut back on fluids. In between, though, not a lot.
Surgeon was Richard Foster. He’s absolutely excellent, and the surgery and post-op stay went extremely well. But like you, I get conflicting advice between the surgeon and the nurses. Nurses say drink that 64 plus per day–surgeon says drink what you usually drink. Nurses say irrigate more than once a day if you drink less than 64; surgeon says irrigate once a day only. Nurses say work hard and reposition to make sure pouch is drained each time. Surgeon says it’s not that large a concern and that it is permissible to use gentle abdominal pressure and/or bearing down to help fully empty, as well as to aid in dislodging/pushing through any mucus that might semi-clog that catheter tip.
So of course I’ve tried all these things. I’m very fortunate that except for 4 hours a week, I work exclusively at home. That has been a huge blessing. BUT–when I’m out and about, or at work, or working out, or standing in front of people and running a meeting–the leakage is an issue of concern. At this point, I would not dream of leaving the house without using some sort of appliance so that if and when that leak comes, it’s contained. I really don’t have a lot of restroom time when I work on site–emptying fully is usually a slow 12-15 minute process with around 300 cc per. And it’s not like I leak tons–but it is enough that it comes quickly and therefore soaks through any standard “dressing” that I’ve found; hence the “Little Ones” urostomy bag.
I’ve read about fistulas and hope that is not an issue, but I just had my first routine post-op CT last week, so we’ll see how that turns out.
I suppose most of this may be just venting. If I could find some dressing method that would contain the leaks, I’d stop with the flange/bag routine in a heartbeat. At the moment, though, it seem the only thing I can do unless there is something else out there that more experienced post-op people know about.
Thanks for taking the time to read and respond. :)
Wow..IU is a major center for Indiana Pouches. Who was your surgeon?
Firstly how much fluid are you drinking? And what is your output at 3 hrs?
I also have an Indiana and the stoma nurses get a little nuts about drinking 8 8oz of water a day plus…i tried to do that and was squirting fluid on the hour. My doctor asked me how much was i drinking and have i always drunk that much…which was .NO. He said to drink when you’re thirsty. That solved my problem and my pouch was trained to 4 hrs within a month and eventually would go overnight if i held my fluids down after dinner. My pouch holds about 700 cc’s. and really thats the limit it should hold and i rarely let it go that far. Usually my output at 4to5 hrs is 250 to 400cc’s.
Sometimes a fistula can cause these problems but i’m assuming your surgeon has ruled out any underlying causes?
And just a thought…at 7 months you’re still producing a lot of mucus which can plug up the catheter and you may not be completely emptying? Do you use sterile saline to break it up?
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