incontinent to continent urostomy

[uroman]

Hello everyone,

I am looking to find someone who has made the switch from incontinent urostomy to continent urostomy. 27 years ago I received my incontinent urostomy. This urostomy has caused me very little to no problems. I am just very interest in making the switch to continent. No bag is the major reason. What I want is to get others oppinions if they had made the switch. What are the pros and cons and was it worth it over all.

uroman

[Lynne]

uroman,
There are some others here who have continent urostomies. I do not. I'm hoping one will respond to you soon.

[squid56]

Hi uroman, I made the switch in 1992. I had my ileal conduit for 6 years and it had lots of problems. I had it revised once and it still had problems. When I was told it was still not working right they told me f I wanted they could switch it for me, so I went ahead and did it.It was what I wanted in the 1st place, but at the time they were not yet perfected,so I was given the standard urostomy. Anyway, I am loving my continent pouch. I guess the biggest con is the surgery itself- you are going through MAJOR surgery all over again and the recovery takes awhile. It does take time to train the pouch to hold increasing amounts of urine, you need to adhere to a strict schedule of cathing in the beginning to get the best result, but in the end it is well worth it. As for pros- I think there are loads of them- it is better on the kidneys, they build in valves so that urine does not reflux like it does in the standard urostomy. You save lots of money on supplies, all you need are catheters, and coverings for the stoma. When I wore a pouch, my skin had turned gray around the stoma, once I no longer wore a pouch the skin went back to normal color. It is as close to feeling normal as one can be without a bladder.You can sleep though the night and not have to hook up to night drainage once the pouch is trained and you are also freer to wear anything you want. Please feel free to ask me anything.

[Lynne]

Squid,
Thanks so much for responding to this post - I knew I could count on you !!!!

[uroman]

Thanks for the replies. With the cathing how often if ever do you get infections. how long does it take from start to finish to prep empty and clean when going to the restroom?

once again thanks for your reply.

uroman

[squid56]

As for emptying time- it really depends on how much is in there and what size catheter you use. For me it takes about 5 minutes, give or take. At this point I no longer need to use lubrication on the catheter, my stoma produces plenty of mucus so it tends to slide right in. As for infections they have gotten to be fewer- now it's about 2-3 times a year. I think it mainly happens when I don't drink enough and forget to empty, so the urine sits in there and bacteria starts to grow. For me it is no big deal, I would much rather it be that way than how it was when I had my bladder or when I wore a pouch. In fact when I wore a pouch I used to get them every couple of months. Also when I go out I always carry a clean sterile catheter with me so I don't have to worry about cleaning it before, plus afterwards I just wait to clean it when I get home.
Your welcome Lynne

[Harleyangel]

I have had my continent urostomy for almost five years now. I had in done do to trauma that distroied my bladder. The surgery went just fine, however it was major surgery. I would of course do it all over again since the alternative was two bags hanging out of my kidneys. It took about four months to get the neo bladder to expand to it’s current size. In the beginning I had to empty it every 2 to 3 hrs. Now I empty every 4 to 5 hrs depending on what I drink. Very rarely to I have to get up in the night. It does take about 5 mins to empty. I don’t need the lub anymore and I have never needed a stoma cover. The stoma is in my navel and even wearing a bikini no one would know it’s there. I do get bladder infections about every other month. I can tell when I get them because of color and order. I do not have to take anything for them. When I get one I drink an 8oz glass of cranberry juice every morning until the symtoms go away. This treatment was recommend by my urolgist. I use the cathers for about two to three weeks and order about 10 at a time. To keep them clean I rinse them out with cold water and anti-bacterial soap. I just carry a small bag with me in my purse or even jacket pocket. I leave one in my desk drawer but I don’t leave one in cars. They are plastic and extreme temps can break them down. Living in Minnesota, it would not be good to leave one in the car in the winter. I do ride a motorcycle and just put one in the saddle bags. My parents are in Florida now and I will be traveling down there. I sent two unwraped ones down with them so that they are there for me when I visit. I have never had a problem with airport security. If they ask I just tell them it is medical supplies and they move on. You just have to reminber to bring one with you where ever you go but it can a very postive thing.
Mollie

[uroman]

Thanks Molly for the reply. I take it these caths are flexible and can be carried in a small bag that would fit in my jeans? The lengths of these cathaters are about 12". Is that correct?
Well between you and Squid it sounds like there is not much of a reason to not make the switch to continent.

thank you,
uroman

[squid56]

Uroman- the catheters I use are 16"s. For me they need to be long to navigate the tract that leads into the pouch. They are bendable so yes, you can fold them up and keep one in your pants pocket. I have them squirreled away all over the place, I do keep them in the car for emergencies, I always have one in my coat pocket, in my purse, my backpack, and one at work. Years ago one my doctors told me that cowboys keep them inside of their cowboy hats! You can be very creative about where you hide them

[Harleyangel]

The ones that I use are 14 inchs long and flexable. I get them from www.continentostomystore.com along with anything else I might need. Squid, i've never heard about cowboys carrying them in thier hats. I might have to try that the next time I'm at the ranch. Would save having to put the saddle bags on for a short one or two hour ride.

[uroman]

Squid / Harleyangel,

do you get a feeling of fullness/ heaviness if you don't empty. I know if my bag gets full enough I can start to feel the pressure on my kidneys.

uroman

[uroman]

Another question. Why is there not an area here mainly for urostomates? Is there that few of us compared to our other fellow ostomates? That is the way i feel.

uroman

[Harleyangel]

Uroman,
I do get feeling of heaviness when I wait to long. I also get some mucus, from the stoma, if I wait to long. I'm not sure how many urostomates there are on the board. There might be quite a few but the don't post.
Mollie

[squid56]

I actually get a feeling of pressure when I need to cath, if wait too long then it will begin to hurt. I don't know there is not a separate thread for urostomates, that may be a good question for the people that run this board. It is true though that urostomates are in the minority.

[noaheema]

I have had my "continent" urostomy for five and a half years. to address removal of my blader due to bladder cancer). Not having had a bag I can't compare the experiences.

I have no feeling of pressure when my pouch is full so have to watch the clock to cath every 4-5 hrs. Because I am not a good clock-watcher, I have a sponge/gauze pad folded and taped over my stoma in case I start to leak. Usually I can feel a small "gush" if I have forgotten to void and can go immediately and cath with only the sponge getting wet. (The accidents shouldn't frighten you; actually means that I forget that I have to void through a stoma.)

I can get between seven and eight and half hours of sleep a night (my body cooperates when I am exhausted).

I have had no real infections - lab results do come back with presence of bacteria and I have to explain to the non-urology docs that that is now my "normal." I have had no other signs of infection, so the presence of the bacteria does not qualify as a UTI.

Occasionally, I will see tiny chunks of white matter in the urine so I will irrigate for a few days and that relieves the problem.

As to a separate thread, I can't judge how many urostomates there are, but gather that there are not many continent urostomates (very small number at the conventions) OR having one is such a breeze that most don't feel in the need of any support groups.