New Indiana Pouch

For discussion of intestinal and urinary diversions that avoid wearing an external waste collecting device.
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LisaB
Posts: 12
Joined: 2009-09-25 20:19:07

Re: New Indiana Pouch

Post by LisaB »

Thanks so much for the welcome. My doctor gave me some Levsin, for IBS, to see if that would help. I'm not so sure it's done anything really. I am irrigating about 4X a day right now and trying to keep up the fluids. I'm trying to be patient and it is getting a little better. Lisa
jacksmimi
Posts: 4
Joined: 2009-09-26 19:48:20

Re: New Indiana Pouch

Post by jacksmimi »

Hello..I also am a new Indiana Pouch recipient. I am now 7 weeks post surgery. My leakage problem seems to be a little different than those I read. My pouch itself is leaking into the vaginal flap. I have been put back on a continuous flow bag to see if the pouch will seal itself. We will do this for three weeks, and if not, will have to have surgery to fix it. My RC went very well. I do have to have chemo, but can't until the leak is resolved as it would give me a toxic dose of drugs. I am curious if anyone else has experienced this problem?
LisaB
Posts: 12
Joined: 2009-09-25 20:19:07

Re: New Indiana Pouch

Post by LisaB »

How did you know you were leaking??
jacksmimi
Posts: 4
Joined: 2009-09-26 19:48:20

Re: New Indiana Pouch

Post by jacksmimi »

Urine was flowing out of the vaginal area. We did a test with a pad and a tampon to see for sure where it was coming from (urethra or vagina) It leaks whenever we irrigate and sometimes just whenever. I had a pouch gram (with dye) and the leak was very evident..also had the IVP with dye to check for blockages in kidneys, ureters etc. and there were none. The pouch is leaking from a small fistula right above the vaginal flap. Now I am on a continuous flow bag (the SP tube was still in) to see if the pouch will shrink up and heal itself..the surgeon said we would give it three weeks.
LisaB
Posts: 12
Joined: 2009-09-25 20:19:07

Re: New Indiana Pouch

Post by LisaB »

Hey you guys. Has anyone had trouble with bleeding? I've had some bloody mucous flecks which I think is normal but today there's been alot. I tried to call the dr. but got the voicemail. I don't think I've done anything wrong, make sure I irrigate well and up'd my fluids a bit. Any other thoughts. Thanks, Lisa
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Re: New Indiana Pouch

Post by squid56 »

If you are seeing bloody flecks in the mucus in your urine that is ok. I get that all the time, it is because the blood vessels are very close to the surface, so when you cath is not unusual to nick them. If you see alot of blood, or the urine starts to smell nasty, get it checked to make sure you not have an infection. The next time you cath if it is more, then try calling them again tomorrow. If you still have blood, but is now dark then that means it is old blood, if the blood is bright red, then it is fresh. You can also take your temp to make sure you do not have a fever. Let us know how you are doing. Judith
Livinnlaughin27
Posts: 1
Joined: 2011-07-14 12:45:09

Re: New Indiana Pouch

Post by Livinnlaughin27 »

I'm scheduled to undergo this procedure after a long battle with a nuerogenic bladder but I am wondering about the recovery time n as well as this leaking issue?? Someone had mentioned this is not uncommon?? Currently I have a sp tube n leg bag, n deal with severe bouts of pain almost daily. Is the Indiana pouch more problematic??
squid56
Posts: 796
Joined: 2005-10-20 23:48:34

Re: New Indiana Pouch

Post by squid56 »

An Indiana pouch as opposed to the standard ileal conduit in which you wear an external pouch are both very different. The ileal conduit is a shorter surgery and usually a shorter recovery as well. It is a pretty straight forward operation that all urologists learn to do. The Indiana pouch is more specialized in that the surgeon must create an internal pouch using bowel, put anti- reflux valves in and also make a stoma that will not leak. It is linger and partly due to that the recovery can take longer because the body is under a longer period of stress during the surgery. As far as recovery everyone is f=different but with the ileal conduit basically you get the surgery, are taught how to care for your ostomy and then you are pretty much good to go. With the internal pouch you must go through a period of training the pouch to hold increasing a=mounts of urine. You will be taught how to catheterize it as well as care for it and learn how to irrigate it. Even though this is more involved I have to say having had both types that I LOVE my Indiana pouch and would gladly go through the process all over again in a heart beat knowing all that I know as far as recovery and potential issues.
KJP
Posts: 1
Joined: 2011-07-29 19:14:41

Re: New Indiana Pouch

Post by KJP »

Livinnlaughin27 wrote:I'm scheduled to undergo this procedure after a long battle with a nuerogenic bladder but I am wondering about the recovery time n as well as this leaking issue?? Someone had mentioned this is not uncommon?? Currently I have a sp tube n leg bag, n deal with severe bouts of pain almost daily. Is the Indiana pouch more problematic??

I had this Indiana pouch procedure done over 22 years ago. I was about 42 at the time. It was a rather extensive surgery (about 9 hours) but I'm glad I went this route rather than an external bag. As I recall, the 1st month was a bit rough-going but recovery time went pretty quick after that. I have a stoma in my belly button and it does leak a little so I keep it covered with a small gauze pad. I use "McKesson 2" x 2" non-wowen sponges." Hold it on with a piece of surgical tape that doesn't rip your skin.

There hasn't been any pain involved with the pouch over the years. It's a bit of a pain to deal with but once you get used to it it becomes secon nature.
carriegarrity
Posts: 1
Joined: 2016-05-29 00:12:16

Re: New Indiana Pouch

Post by carriegarrity »

Hi Avis,
I have had the Indiana Pouch for over 20 years. When I first had the surgery I would get blocked up with the mucus and not be able to pee for 15 hours. My Dr. told me to irrigate it which basically made it worse. Eventually they put me on zantac and that helped a lot. I think I was on it for a year and since then I haven't had to take it or had any problems with getting blocked up.
Lissa +
Posts: 1
Joined: 2020-10-17 21:32:22

Re: New Indiana Pouch

Post by Lissa + »

I am new to this. At 8 weeks post Op I have had some problems. I was unable to Cath for a couple of days and urine got trapped and an emergency room visit was necessary. Since then my urologist inserted an emergency valve to help if the situation arises again while I become more comfortable cathing. I should be getting it out this Wednesday.
My question is this. I am told to irrigate my pouch once a day but for the past 5 days I have not been able to irrigate. No mucus comes out. In fact my catheter clamps up.i have been flushing with 30-50cc of saline. Does anyone have any suggestions? I would appreciate any advise.
pri_marie
Posts: 1
Joined: 2023-01-06 09:34:19

Re: New Indiana Pouch

Post by pri_marie »

I've just an Indiana Pouch over Thanksgiving break. I was sent home with my, (is it called a stoma?), capped and directed to use the flush tube until December. I acquired an infection at the end of December and wasn't able to have the flush tube removed and begin self carrying again until yesterday. But as soon as I began self cathing yesterday, the catheter kept clogging with mucus. I flushed it, or I think y'all say irrigate. My doctor says flush it, lol. So I flushed/irrigated it like 4 times and went through like 5 catheters trying to get some output but the mucus kept stopping it up. I do use the water based lubricant, but I'm thinking maybe my catheters are to small and that's why they get so easily clogged. I currently use the 14' French's soft rubber ones. I don't use the hard plastic catheters because they're painful and irritate my pouch. Any suggestions to get an easier flow when draining? I saw the tip about drinking more water, I'll incorporate that as well!
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