\"Flopped\" neobladder

Holly,

Thank you so much for your message to me re: neo and having to self cath. At times you feel you are the only one, and this site has been a God send for me and women answering regarding the "self cath".

I was never told I would have to do this, but it is OK, I have adjusted but I need to learn how to cath myself.

Please can you tell me your technique?? Do you stand over the toilet, etc.?? How often a day?

Thanking you in advance for your helping me understand this is common in women and I look forward to hearing from you.

Silk(Linda)

Holly!
Great to hear from you. Hope you are feeling better.
I have to say that, luckily, I have never had any pain from cathing just discomfort if the tube is not wet enough - only happened the once though and now I use pre-filled catheters!
I suppose it just goes to how how wonderfully unique we all are? Part of the build up to my op was that I was taught how to self cath beforehand. Perhaps I was being conditioned? I now like the control I have over the neobladder and the cathing has become routine. The main problem is remembering to cart an endless supply of catheters around which is especially tiresome when travelling! (Mind you I would have to do that with an Indie anyway.)
Anne

Hi,

I am also a member of this club - female neo needing to self cath. My neo is 2 years old and I have to self cath daily too.
When I was facing RC I brought up the fact I did not think I could handle having to self cath and was assured I would not have too. And for a while it was true. Personally I would rather have the Indiana pouch if I got a "do over".
I had a visiting nurse come to my home a few times with all kinds of supplies to teach me. As much as I despise having to do it, I have learned.
Odd as it is, I ended up in the hospital overnight 10 days ago...Dr did a scope on my neo and I got thru the procedure ok. But within 2 hours I was in great pain and couldn't even walk. Turns out there was an air bubble that got in my ureter that made it to my kidney. It resolved by the next morning but sure was scary. Felt like my kidney was backed up and going to burst. Anyway, the nurse needed to get a sterile urine sample so had to cath me for it. She had some difficulty and I had to tell her a few tricks to get us thru it. I can't imagine my hubby doing it for me on a reg basis - atleast I know what I am doing lol!
If I can be of help just let me know, Holly

Pat,

Thank you for again your answer to me. I do not remember the surgeon saying to me that there was a good chance that I would have to cath. for the rest of my life since I do not have female organs to hold the neo in place. I think I would have gone with the neo and it is not a problem to cath 4 times a day. I cath before work, at lunch I come home and cath, after work and before bed.

My husband does it for me, he is truly one in a million, but if you know of anyone that does cath. please ask them to e mail me. I tried once and found it very difficult.

Again I thank you for answering me, it sure helps to know you are not alone and to hear from others on this amazing site that has been so informative for me over the past year.

Again, many thanks to you and anyone that has sent me a message.
Silk

Here's one study

www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7XMT-4HHNW7C-1T&_user=10&_rdoc=1&_fmt=&_orig=search&_sort=d&view=c&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=f265d1ed1e43479097a4d8a8a931136a
and a good article over at web/cafe
blcwebcafe.org/neowomen.asp
My soap box is that most women when told of reconstruction are not given choices....we should have a say in that. And none of the choices is wrong providing you are willing to be complient with your selection. If you don't mind cathing through your urethra go for the neo.....personally too many nerves there for me so i knew i couldn't do it......
Choice......thats the key word here.
Pat

Pat,

Thank you so much for your message to me, it made me feel so much better "welcome to the dysfunctional neobladder womens club". Sometimes you feel it is only you, I am not happy that anyone has to go through this, but it helps to know I am not alone and I thank God, it could be worse.

Thank you.
Silk