incontinent to continent urostomy

[uroman]

noahseema

thanks for the info. Once again it sounds like everyone deals with the same issues. Non of which are very difficult. As far as infecions go every time I have a UA done it comes back with blood in the urine. I have to tell my docs its normal with a stoma. I'm amazed at how few docs deal with these issues (urostomies.) It seams that I am the only urostomate with most of my docs. I must say that I only two docs that i see on a regular basis (primary and neurologist.)

Do you find it that easy to take care of the urostomy / neobladdere? Wearing a bad sucks. But i must say it is easy to take care of. I empty it all the time. I can not tell you how many time a day i empty. The main reason being that I dont want it to show.

Thanks again for all the responses.

uroman

[squid56]

I have also seen too may doctors that don't even have a clue about urostomies. I am fortunate though in that my PCP took the time to talk with my urologist and learn about what I have. He is the one who takes care of me when I get infections- my uro is 2 hours away. The local urologists are not interested in taking care of me.

[noaheema]

To answer your question about the "care" of the stoma --- it requires NO care (after the first month or so - when it may still be healing and swab to kill germs. It is sort of just like (in my case) another belly-button. [My is on my lower right abdomen - some are actually in the navel.] It really requires no attention - one of my biggest thrills was to go swimming for the first time after surgery - nothing was visible to detract from my "slick-swim-suit" look (That was said with my tongue firmly in my cheek as my "sleek-swim-suit look left long before the surgery ). but there really is nothing to be visible.

The "neoblaader - which, I was told, by my surgeon, is actually only used when your lower pipes are still intact and you void "normally", is buried in my body slightly to the right of where my original bladder was; I don't know nothing from it except that it works. Joy! Joy!

[Mater]

Uroman,
i had my continent pouch surgery about 12 months ago. I thought long and hard about it, and it is the best ostomy decision I ever made. I would do it all over again in a second. I had a couple complications right after surgery, but as others have said, it is major surgery. I have had one kidney infection. Aside from that, nothing negative to report. Hello to everyone else.

Chuck

[barbinal]

Yes, I too wish there was an area for just "we" urostimates.

I have an ileal conduit, but we could all help each other like the colostomates do.

If you are out there, board moderators, please consider doing this for us. We know we're in the minority, but still have needs and concerns too.

~Barb~

[uroman]

Chuck,

So you went from incontinent to continent? It's a lot better than what you had before? If you did make the switch was the reason just wanted to get rid of the bag? I have the surgery scheduled in less than one month. Just want to be sure I am making the right decission in making the switch. Lately I have been thinking a lot about being able to go swimming with no shirt. Makes me smie.

Thanks a uroman

[Mater]

Uroman;
I made the decision to have this surgery for several reasons. Freedom from appliances that had become unreliable and would leak frequently was the biggest reason. Not always having to have an escape route when the appliance would leak has been a huge weight off my shoulders. Looking back, it is amazing how the urostomy controlled so many of the things I did and did not do, on a daily basis. I was ready for the freedom that the surgery would give me.

Good Luck on your surgery, and if you have any other questions, feel free to ask.

[uroman]

Mater,

I know what you mean when you say it controlled your life. If mine has not controlled my life it definetly affected it. Thanks for answering my questions.

uroman

[mrsjt]

hello uroman,
yes i had a urostomy for about, boy over 20 years, about maybe 7-8 years ago i changed to urinary koch pouch because i was getting too many bladder infection and it was not good for my kidneys, so i made decision to change. i cath about 4-5 times a day depending on beverage intake. i use to have bladder infections all the time before the koch pouch. yes i do prefer this over the urostomy bags .that was a long journey with those bags, but i am thankful for new and old. making changes is something to think about. do not rush in making your decision because it could be something you have to deal with for the rest of your life. i have a permanent ileostomy and koch pouch for duration, but i have had to make some descisions and i am happy with it in spite of little complications her and there. nothing to big, just having problems with strong urine ordor, but i have gotten suggestion for discussion board, which i will follow up on.
mrsjt

[squid56]

I had the same experience as mrsjt as far as infections. With my conduit I was getting them almost every month, now it is down to about 2 times a year! Another plus for the internal pouch. Plus with the pouch it will protect the kidneys by eliminating reflux. With the conduit, urine naturally refluxes back into the kidneys. With the continent pouch they put one valves in so that urine will not reflux anymore.

[uroman]

Hello everyone,

Still thinking about making the switch. When removing the cath from the stoma is there a lot of mucus that comes out on the cath? Also do you have to clean the cath after every use? Can you just wipe of the outside with a clean wipe? Do you have to flush out the indsie.

uroman

[noaheema]

The mucus that's comes out in my catheter is relatively "thin" but some remains in the tip - I do a quick flush out of the inside (just put the lower end under the faucet for a few seconds.) When I'm out of the house, I wrap the cath in a paper towel & stick into into a sandwich or snack size baggie.

I only use a cath once before putting it with other used ones - now have a stock large enough to my my "cath laundry" about once every two weeks (for me 70 catheters). Cleaning the caths is a "clean" not sterile process.

[jrickard]

I've had my "Indiana Pouch" since 20007. I lost my bladder to cancer in 2005 and had nothing but trouble with the urostomy bag. I am so glad I went with the internal resevoir! I have had problems with infections, but I think that is from reusing catheters. Even though I wash them with antibacterial soap and use hand sanitizer before cathing, it's not a very sanitary environment. Thankfully, I found the website]www.180medical.com. They have contacted my insurance company and have me set up for single use catheter kits to be shipped to me on a monthly basis. I'm a new customer and am just beginning the process, but am looking forward to lessening my infections! Overall, even with infections, I am so glad I had the Indiana Pouch! I highly recommend it to anyone considering the procedure.

[rainidaze]

Is anyone still looking at this topic - I notice it's several months old. I'm new here so hope I'm not breaking any rules.

I really want to find out who is doing the incontinent-to-continent urostomy procedures. Someone told me the Cleveland Clinic (Weston) did. My husband called them, and they confirmed that they did the procedure. So he made the appt. for me and I drove 200+ miles to go there. But when I went for my appointment, the doctor emphatically told me NO! he would NOT do it blahblahblah and "go to the doctor who did the original procedure" (who isn't practicing anymore).

I have had my ostomy for over 15 years and still grateful I had it done (IC) - but it is making life a living hell at work. Thank you for any information you can give.

[rainidaze]

Overall, even with infections, I am so glad I had the Indiana Pouch! I highly recommend it to anyone considering the procedure.

I'm sorry I did not see this before I posted which hasn't appeared yet. I would LOVE to switch to Indiana Pouch, but can't find anyone to do it.

A couple of posts wondered why there is no separate area for urostomates - I think it is because there aren't many of us. We used to have an ostomy support group here in town - years ago - and I went once to get more info and just meet people like me since I don't know anyone - and I was told that the support group was for ileostomates and colostomates, not really for urostomates.