New Indiana Pouch

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Mater
Posts: 7
Joined: 2009-03-26 20:22:53

New Indiana Pouch

Post by Mater »

Hello,
I am 8 weeks post Indiana pouch surgery. All is well except I have started experiencing some leakage. This occurs both overnight and also during the day. I generally do not go more than 3 hours between caths at night, and not over 2 hours during the day. It never appears to follow any pattern as to when or if I were moving or straining in a particular way. I believe I have read on this forum that this is not unusual, but I was hoping that someone may have some tips on how to minimize the leakage.

Thank you in advance for your help
Chuck
Bladder Extrophy-1963
Urostomy-1972
Indiana Pouch-2009
10french
Posts: 10
Joined: 2008-10-03 17:53:28

Re: New Indiana Pouch

Post by 10french »

Hello!
I've had my Indiana pouch for close to 15 years now. My pouch leaked in the beginning as well. Over time, as the pouch enlarged, I was able to wait much longer between, even at night. Now I drain between 2 to 4 hours during the day and 1 to 2 times during the night. I restrict my fluid intake in the evening as well. It's hard to tell if your leakage problem is due to the "newness" of the pouch or a mechanical issues (i.e. the valve/stoma has an issue) If the later, then I believe there is a way to correct the problem with some type of injection to tighten/seal the area around the valve. It's normal for the bladder to leak in the beginning as it will spasm, causing leakage. This should subside over time.

I used to tape gauze over the valve to keep myself dry and run to the bathroom ASAP before I completely wet myself.
In the beginning I always kept a change of clothes in my car and/or in my office.
i drained every hour while at work. It was a pain but eventually got better.
Be sure to irrigate every day.
You could ask for and use a Foley catheter and leg bag/drainage bag to wear at night.

Not related to leakage problems, here are other tips:
I use alcohol swabs /preps to clean my catheters for reuse (after cleaning with hot soapy water).
You can also sterilize catheters in the microwave (place in a ziplock bag with a samll amount of water, nuke for 10 minutes. Keep the catheter sealed in the ziplock bag until use.)
I keep catheters in all of my vehicles, at work, in my purse, and even at friends and families homes.
Always have enough supplies on hand (2 months or more) You never know what kind of insurance issues you'll have.
Find a supply house where you can purchase catheters directly. Again, you never know about insurance coverage. You'll need a Dr.'s prescrption for this.
I know this sounds obvious, but clean your valve/stoma opening each time you cath. i use an alcohol prep for this.
Wash your hands before you cath and then after
If you feel an infection, don't wait it out. Call your doctor.
Get on an email basis with your urologist.

I hope this has helped. Please feel free to email me if you have other questions.

Barbara
Bladder exstrophy 1969
Urinary diversion 1973
Indiana pouch 1994
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Re: New Indiana Pouch

Post by squid56 »

Barbara gave you some great advice. My pouch is going on 17 years. Yes it is not unusual to have this happening. One suggestion I might make is to irrigate the pouch at least once a day, maybe twice. Besides it being so new and not at its full size yet, in the beginning you will produce more mucus that later on its life. This mucus can be irritating to pouch and it will try to spit it out. By irrigating it will help cut down on this, plus make sure you are drinking enough fluids. I can't stress how important this is, it will also help to thin out any mucus you are forming. I always keep my stoma covered with either gauze and tape or AMPatches. Welcome to the club! Judith
jpotts
Posts: 52
Joined: 2006-07-25 20:06:23

Re: New Indiana Pouch

Post by jpotts »

Late late again. Sorry.
Barbara and Judith covered all of my thoughts! One great product I use is the 3m nexcare stomaseal cover. Very absorbent in case you leak and not too expensive. Where do you order your supplies from? If you have your choice, I would use Edgepark they are awesome and even follow up with you if you haven't ordered in a while. How are you doing?
Let go and let God... Jules
Indiana Poucher since May 06
Sheri
Posts: 5
Joined: 2009-05-23 13:50:31

Re: New Indiana Pouch

Post by Sheri »

I had my Indiana pouch surgery 15 years ago and also leak. It was much worse in the beginning, I had surgery to repair my ileocecal valve and also collagen injections several times around the valve. I still leak but not as bad unless I have an infection. I use nursing pads to cover my stoma, they are very absorbent, inexpensive and do not irritate my stoma. I now go about 4 hours between caths and just get up once at night. I would have this surgery again in a heartbeat, I now have a normal life instead of living in the bathroom. Sheri
Liudmila
Posts: 6
Joined: 2009-06-19 10:11:20

Re: New Indiana Pouch

Post by Liudmila »

Hello to all! I am new to the group, and actually I am new to my new life with my new bladder.
I have a Miami pouch, don't know if somebody else here has it but I was told that Indiana and Miami pouches are very much the same.
I am 7 weeks after the surgery, am back to work for 3 weeks already. Generally, I would say it's not that bad.

But..... I am suffering from constipation that as far as I realized causes leakage of my stoma. I am so much trying to keep a diet, practically live on fruit and vegerables, make fresh vegerable juice every morning, and add 2 tblspoons of olive oil into it. In my normal lfe that would cause me to spend the whole day emptying my colon but not now.

I would like to avoid lataxives, but I still take them- Milk of Mag works good. I was told that it's very easy to become dependable from them. The best thing for me ----enima. I am doing it every other day, and I need just about a tblspoon to make me go. Is it OK to do it? My docs say that I can do anything that helps, but I need somebody's experience.

I don't know why but sometimes I can make it 4,5 hours during the day without cath, and practically sleep the whole night. But the other day the stoma starts leaking in 2 hours, and even at night it leaks in 3-4 hours. Do you know what it depends on? I know that coffee makes you gooooooo often, so I am trying to avoid it, am drinking practically only water even though that don't like it.
Leakage became like a paranoya, am checking on it every time, even though that even when it leaks it's not very heavy and I can make it to the bathroom. I don't think that leakageis related to a small pouch. I measured once, and it contained around 750 ml which I believe even a natural bladder can hardly contain.
I also have a lot of pressure in my belly and also in my back, am always having a feeling that my anus is full( I still make everything possible to have some stool at least once a day).

Any of your advise is appreciated.
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Re: New Indiana Pouch

Post by squid56 »

Welcome Liudmila, as far as your bowels it does take awhile for things get back to nromal after the surgery. Just remember they also operated on your bowels as well. If your docs know about the enemas and are okay with them then its fine. I think adding the fiber is good, as well as drinking LOTS of water. The water should help with your bowels as well keeping your kidneys flushed so that you will be less likely to get an infection in your pouch. Sounds like you are doing GREAT with the pouch. One thing to consider is irrigating it, for some that helps to cut down on leaks. Some people leak because mucus collects in the pouch and if it is not flushed out it causes irritation and then the pouch will leak. The other thing is that your surgery was not long ago so things may change. Judith
avis
Posts: 1
Joined: 2009-07-08 13:20:02

Re: Indiana Pouch

Post by avis »

Hey everyone

I need some help. My Mother is 75 and has had the Indiana pouch for about 7 years. She has just been told she has liver disease from the medications she took before she got her pouch. Since she got out of the hospital she has had alot of mucous. She went fro a 14 french to a 20 and it is still getting blocked. Can anyone give me there feedback. She does irrigate and that is also hard. Thanks
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Re: New Indiana Pouch

Post by squid56 »

Hi Avis,
Sorry about all the troubles your mom is having. Besides irrigating (how often?) is she drinkiing pleanty of water to keep her urine thin? I would also advise her to watch her intake of dairy products as they form mucus. If I can think of anything else I will post it. Judith
empj58
Posts: 7
Joined: 2009-08-20 21:10:54

Re: New Indiana Pouch

Post by empj58 »

First of all, all posts contain valuable information. I'm have a new Indiana pouch, 8 weeks since surgery. I'm experiencing many of the same issues for a "newbie". During the day, I'm able to last between 2-2.5 hrs between draining and now have reached 3 hours during the night. Occasional leakage experienced.

However, everyone mentions about irrigation on a daily basis. My doctor never mentioned anything about irrigating. I'm afraid I may not be doing something that may be hurting me. I do have an appointment tomorrow and plan on discussing with the doctor. I still would like to hear anyone's advice.

Thanks for all the help!! :)
Harleyangel
Posts: 25
Joined: 2009-07-13 15:56:56

Re: New Indiana Pouch

Post by Harleyangel »

I have an Indiana pouch for over four years now. It took over 8 weeks for the pouch to reach it's current size. Which holds about 500 to 600ml in comfort. In the begining I would have to cath every 3 to 4 hrs during the day and at least twice a night. Now I cath every 5 to 6 hrs during the day and never at night unless I have dairy (Milk goes right through me :lol: ). Then I have to get up once. If the pouch is very full then I do leak but only a few drops. I do have mucas every day but not a lot and I have never put any kind of cover over the stoma nor do I have to irrigate. Seems I have been very lucky. I do get UTI often but 8oz of Cranberry juice every morning for a week takes care of it. Only once did I have to get meds for one. My stoma is in my navel and unless I point it out no one knows it's there. Even in a two piece swimsuit. Love my surgen, he did an awsome goob for me.
Mollie
Mollie


Adhesions to small intestine
Ileo Apr. 2009
Take down Aug. 2009
cupcake53
Posts: 4
Joined: 2008-02-10 22:01:09

Re: New Indiana Pouch

Post by cupcake53 »

I have had my pouch since Jan 08 and loving almost every minute. I just had a large herina (7.5 inches) repair which my stoma was in the very center of it. So they relocated my pouch and stoma and now I am having a problem with mucas forming causing retention and my pouch is holding up to 1600cc of urine at a time before I can finally get the plug out. In the past (before surgery on Aug 24) I never had a problem with mucas the doctor did mention something about muca-mist but has not given me any. Has anybody ever heard of this? I will mention something about leaking that I had a real problem since my first surgery and the urologist found out that I have severe IBS in my pouch and was given enablex for the spasams and it worked great and stopped the leaking with one week after starting the enablex. I have not taken it since the surgery since now I am going in the opposite direction and am unable to empty. With all of the problems I am still pleased that I no longer have my bladder.
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Re: New Indiana Pouch

Post by squid56 »

I have not heard of mucamist, but will look it up. You will always have some mucus because the bowel naturally forms it and even though that section is now your bladder it still performs bowel actions. Dairy tends to make you form more mucus so if you take in alot of dairy try cutting back on it and see if that makes any difference. I also have IBS in my pouch and I take dicyclomine for it. I love my pouch too :D
LisaB
Posts: 12
Joined: 2009-09-25 20:19:07

Re: New Indiana Pouch

Post by LisaB »

Hi All. I'm new to this. I've had my pouch for 5 weeks now and things are ok. I have little leaking but seem to have alot of spasms, at least I think that's what they are, in my pouch. It almost feels like uterine contractions. I'm hoping this is just because it's new and stretching. I just got rid of a horrible spastic bladder, I wasn't expecting this. Any thoughts or ideas???
Lisa
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Re: New Indiana Pouch

Post by squid56 »

First off Lisa, WELCOME to the board. As for the spasms, it may be because it is so new. Hvae you talked to your doctor about them? Hopefully with time they will lessen. You might want to keep a diary of some sort to track them and see if there is something that sets them off. Are you irrigating? It could be that mucus build up in the pouch is irritating it and making it spasm. Judith
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