UOAA Discussion Board

Rainidaze- I had mine converted over at Lahey Clinic in Burlington Ma. Where are you located? I originally had mine done for IC too- that was in 1986.

Rainidaze,

I just went to have a second doc to look at doing my surgery. He did sound very thrilled at all about doing it. Although he said he would I feel he did not want to do it. He also told me that more of the pediatric urologist do the take downs. Have you spoke to any pediatric urologist? Don't give up on your search.

uoman

I was born with vesicular exstrophy and epispadies and because of that I was incontinent for more than 27 years.

3 years ago I went to surgery to do a continent urostomy but something went wrong and my urostomy turned incontinent, so I have to use an external bag. I still got lots of never used catheters stored, I only used one after surgery and then went to use pouch and wafer because my stoma doesn't keep the urine inside my internal pouch.

Hello again,

Another question about the cathing. Do you wash out the cath after every use? Or is it just at the end/start of every day? If it is after every use how is that done? Also when pulling the cath out of the stoma do you get mucus sticking the the cath.

thanks everyone.

I rinse my catheter after use, wrap it in paper towel and store it in a sandwich size zip-lock bag. (when I'm out-in-the-world). Then I wash a bunch by soaking in hot water and dish-washing soap,rinsing and placing between folded towels to dry. Occasionally I have had to reuse a "rinsed-only" catheter when I didn't take enough for the day and didn't have any bad results but I always worry that I will.

Yes, there is usually mucus on the cath.

does anyone use baby wipes (anti-bacterial) to wipe off the cath instead of washing. What about disposible caths.
I'm most likely making more of an issue than the cathing really is. I just get concerned about the privacy aspect of everything: washing cleaning ect. I want to get rid of the bag after 27 years. But these new unknowns keep my thinking about everything positive and negitive.

uroman

I do not use baby wipes as most of them have aloe in them and I am highly allergic to aloe. If you are concerned about washing them out in public, just bring several sterile ones with you, that way you should be set. I suppose you could get alcohol wipes too and use them to clean them. I usually have mucus in the catheter but sometimes I do not if my urine is very dilute.

squid,

Do you have mucus sticking to the outside of the cath? Is a wipe, towel of some sort, needed when pulling the cath out of the stoma to prevent getting mucus everywhere?

thank you,
uroman

Yeah, sometimes it is on the outside of the catheter as well as some inside.I cath sitting down so I just wipe it off with toilet paper and then I wash the catheter out. Running water through it makes any mucus inside come out of the catheter. It isn't very much though, more like a very thin coating, it is not a big deal.

Hey about washing out in public restrooms. Does anyone ever make any comments about doing that: rude, gross, unsanitary? Then I'm sure there are the ones that find it interesting who ask questions?

6 days until surgery.

excited and nervous all at the same time.

uroman

Uroman -

When I travel or am out, I take what I think are enought catheters for the time I'll be gone from home and keep the "dirty" ones in a zip lock baggie and clean them when I get home or back to the hotel. Saves the odd looks and time in the bathroom. Also, I don't use the soap (since I don't know what kind it is, or if I'll have a bad reaction to it when I reuse that catheter) on the catheter. Once you get to the point where you're cathing yourself, check out a few med supply places, I've found pricing on a 18Fr foley vary from $50.00 to $13.00 each. AND I'm self insured so every penny counts.

Good Luck on your surgery. You'll do great ! I had my Indiana pouch surgery on July 15 this year and am still a bit sore/achy, but moving around and doing well. There is light at the end of the tunnel.

Lynda Kay

I am like Lynda, I do not wash my caths out in public either. I tend to make sure I ahve at least two with me at all times. I tend to keep them squirreled away in the car, my backpack, jacket pockets, etc.Good luck with the surgery!

Lynda Kay,

Did you make the switch from incontinent to continent? Or did you go straight to the continent? If you did make the switch what was the major reason?

Thanks to everyone for answering all my questions. I'm sure I'll post another one...........

I've had no experience with an incontinent urostomy. My original uro was going to go this route(it was the only option he could perform), but he referred me to another uro just to explore other options and I'm happy with the indiana pouch. It means more thinking about it with regard to cathing and being aware of your body and what it's doing, but I'm glad not to have an outside bag (no offense to those that do - to each his own).

I did a lot of research on the internet and thru the American Cancer Society. Unfortunately there is no local group with anyone that has an IP, so that was frustrating. If your uro can do the IP, it is a longer surgery and longer recovery and that will be hard, but the pay off, I believe, is well worth it. You'll need your family to help you, there will be days when you doubt your decision and curse the uro and anyone who helped, but every day will get better. I didn't see alot of progress in my own recovery, but I was lucky to have a husband and family that kept helping and encouraging, and one day I could finally see progress. This group has been fantastic, I've learned things here that I couldn't find anywhere else. YOu're lucky to have foud this before your surgery, forewarned is forearmed. Keep us in the loop, we'll be here for you.

LK

LK,

thanks for your response. I have had my urostomy for what 27 years now. I have had this for well over half my life. There are those days that I tell myself just do it (make the switch.) But then theres the part of me that fears the unknown ,dealing with the cathaters. But from talking with everyone on this board, it does not sound very bad. I tell myself that if I could get use to the external pouch that I can get use to the internal.

Thanks again,
Uroman