new urostomy advice

[papertowel]

I posted this in the general forum and it was suggested I also post it here. I'm having urostomy surgery on Monday and I'm still deciding between the external or internal pouch. Does anyone have any input about how they decided, or how the internal worked out for them?
Original post:
http://www.uoaa.org/forum/viewtopic.php?f=2&t=13370

thanks

[peggy p]

I am a female with a Kock Pouch urinary diversion. I do not have to wear a urosotomy bag. I do have to empty my bladder 3-4 times a day with a catheter that is inserted into a suprapubic abdominal stoma. I am always dry. I carry a catheter around with me anytime I leave my house. I elected to have the Kock pouch after many years of incontinence due to a neurogenic bladder. I have never regretted my decision. The only downside is that very few urologists have any expertise with this type of a urinary diversion, and the majority or primary care physicians are clueless with regards to even understanding what it is. I have had my Kock Pouch for approximately 20 years. Dr. Carl Olssen at Columbia Presbyterian Medical Center, NY did my original surgery. Unfortunately, he has since retired.

I wish you luck with your decision.

The Bladder Cancer Web Cafe has some great information on urinary diversions:
http://blcwebcafe.org/content/view/126/ ... g,english/

Peggy P

[squid56]

I have had both types of urostomies. I started off with the ileal conduit, but due to problems with it I was given the option to convert to the internal pouch, so I did. When I first had my bladder taken out, the procedure was not yet perfected and I was encouraged to go for the standard urostomy. That was in 1986, unfortunately there were problems in the way they constructed it, so in 1990 I had it revised. It worked better, but some of the problems still persisted, so I was given the option from a different surgeon that the one who originally did my surgery. That was in 1992, and by then lots of the initial problems with them had been figured out. I have a version of what is called an Indiana pouch, which I love. I have a very tiny stoma in my lower right abdomen that I catheterize several times a day. I keep it covered with gauze and tape or sometimes I wear a special bandaid like covering made especially for stomas. I will tell you that the internal pouch surgery is longer and takes longer to recover from. You will have to train the pouch to hold increasing amounts of urine, but once it is trained, I feel it is as close to being "normal" as one can be without a bladder. The internal pouch is also good in that when they create it they put in valves to keep urine from refluxing back into your kidneys- the ileal conduit does reflux. The internal pouch is also more economical to care for- you will only need to buy catheters and things to cover the stoma. With the ileal conduit, you will need to buy pouches,an overnight collection jug, skin preps, and possibly other items to care for your ostomy. It depends on your insurance what will be covered and how much you will have to spend.
The surgery for the ileal conduit is pretty straight forward,almost all urologists can do them, not every uro can do the internal pouch. An ileal conduit is also a shorter time in the OR and the recovery is usually quicker too, though you will need to learn how to care for the new urostomy- it is pretty easy. In the end it comes down to several things- what your surgeon feels will be the best option for you, how your health is, why you are having the surgery, and the skill of the surgeon. If you do go with the internal pouch, just make sure that your surgeon does this surgery on a regular basis. Where will you be having this done? I wish you a smooth surgery and an easy recovery. Let us know what happens, ok? Feel free to ask more questions until you go in! Judith

[Wrinkles]

I have both colo and uro...I had no choice in the uro, I wear a pouch and have no problems with it...thebest part is not having to get up in the night to go to the bathroom.Wearing the pouch is not a bother, in fact if I was given the chance of getting rid of one of my ostomies I would get rid of the colostomy...uro is much less bother.
I do go pee with it about every two to three hours except at night when I hook up to the night container.
I don't even know the bag is there most days.
Tis personal choice...and what is best for you to have.

[barbinal]

I have had my uro pouch since February of this year. My great surgeon explained both external and internal pouching systems and I chose to do the pouch. I am like the other poster who stated that at times I even forget it's there. "Stanley the stoma" and I are doing quite nicely and getting along great.

One of the things that was mentioned in pre op discussions was the need to be sure that the internal pouch is emptied completely or the urine can stay in there and there'd be more of a chance for kidney infections than with the external pouch.

I'm a happy camper and getitng along great 10 months post op.

~Barb~