Neo After 3 Years and No Sleep - American Bladder Cancer Society

Women and Bladder Cancer

Neo After 3 Years and No Sleep

Posted by Silk on March 1, 2011 at 6:23 pm

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0 of 0 replies June 2018

Now

I always return to this helpfull site for advise, since June 2007!

I have had a neo for three years. The neo “flopped” and I need to cath ALL the time to void (every 2 1/2 hrs.)not a problem….

At night I am also up every two hours, any ideas what I can use to “get some much needed sleep”.

I work 9 hours a day, very active, but getting tired after three years and not much sleep.

Any suggestions??????

Thank you for any and all suggestions.

Silk

mznoregrets replied 13 years, 6 months ago 7 Members · 26 Replies
26 Replies

Mznoregrets

Member
March 15, 2011 at 1:41 pm

I sent an email back with my number – looking forward to talking with you :)
silk

Member
March 15, 2011 at 1:37 pm

I am at work and cannot chat.

I received your e mail and responded, thank you so very much, and I hope to hear from you soon via e mail.

Silk
Mznoregrets

Member
March 15, 2011 at 12:21 pm

I am online right now we can meet in the chat room if you want!
silk

Member
March 15, 2011 at 12:12 pm

Hi Holly,

I will check my span box today, Tuesday, March 15, if you do not hear from me please resend again and I will take extra care to check the “spam”.

I so hope to connect with you soon.

Where are you Holly, not sure if we are allowed to ask that!!

Silk
Mznoregrets

Member
March 14, 2011 at 12:42 pm

Christine check your spam box. I have sent a few emails. Your settings could direct unknown emails to the spam box. This has happened to me a few times. I sent my phone number.
Hope to connect with you soon! Holly
silk

Member
March 14, 2011 at 12:09 pm

Thank you Pat once again for your valuable info. I have learned after 3 years, and little sleep, to adjust, HOWEVER, a big part of cathing is preparing the cath before and after use. If we could only afford disposable catheters, but my health insurance does not pay for catheters and I am sure I am not alone in the problem.

This would be a very good post also, “maintenance of catheters” and how much easier being able to use disposables would be for hypercontinent (think it is the right spelling) for us that can only void using a cath.

Silk
silk

Member
March 14, 2011 at 12:01 pm

Hi Sylvia,

I thank you for you response. Any and all information on this site is so valuable.

Can you tell me of all the diversions that are available??? It can be so confusing.

Thanking you in advance.
Silk
silk

Member
March 14, 2011 at 11:55 am

Holly,

I never received an e mail from you but would love to receive one so that I may respond, my e mail is:

I look forward to hearing from you.

Silk
Guest
March 11, 2011 at 5:48 pm

No actually not many do them.. most major cancer centers do not…usc/norris does not……..#1 there is a ton of scar tissue in there. #2 if the original surgeon took more than 50cc’s of bowel it would not be a good idea as more ileum and the ileal cecal valve must be used. Too short an intestine creates all kinds of problems with absorbtion. O’Donnell does it on select patients and i do believe there is one female uro at MD Anderson who also has done it.
pat
sassy

Member
March 11, 2011 at 8:53 am

Silk,

I did not have a neo. I was talking about a woman who contacted me and was having the same problem you are having. However, I am sure there are places much closer to you that would do this. It seems as if there are several right here who have had various experiences with the neo. I am very satisfied with my Indiana. I hope you find the right answers, and someone that can help you with this problem. We have a good surgeon here in Augusta, GA who has been doing about 30-40 cystectomies a year. I don’t know if she has done any of the conversion surgeries or not. I really like her even if she is not my doctor. My surgery was done before she joined MCG. If you would like to have her name for contact purposes, I would be glad to give it to you.

Sylvia

Sylvia L. Ramsey
Mznoregrets

Member
March 10, 2011 at 6:02 pm

Hi Silk – I sent an email. I will send another with my phone number . If you want to talk to me, Pat has my number too.
Take care, Holly
silk

Member
March 10, 2011 at 1:15 pm

Holly,

I do not know your e mail and would very much like to ask you questions e.g. neo bladder, not sure if I can give you my e mail on this site, but here it is: miamilinda0007@yahoo.com.

Thank you Holly and I look forward, I hope, to hear from you.
Silk
silk

Member
March 4, 2011 at 11:54 am

Sylvia,

Thank you for your informatio. I am in Miami and very far from Iowa.

I do not know about going through another major surgery, can you tell me just a little about yours from converting a neo to a conduit.

Thanking you in advance.
Silk
silk

Member
March 4, 2011 at 11:44 am

Hi Holly,

Thank you so very much for your valuable info. I was not sure much could be done when you have a neo.

I do not know much about the ideal conduct but will do sone research on it and when I see the uro April 1 for 6 month check up I will discuss with him.

I just wish at night there was something I would do. I have no issues during the day, but gee I need some sleep.

Thank you Holly, also I am in Miami, very far from Iowa.

When I first found out about bladder cancer my surgeon highly recommended this site and has for years been so very helpfull.

Thank you all, it is nice to know you are not alone.

Silk
sassy

Member
March 3, 2011 at 10:12 pm

I know of several women who have had the same problem with neo bladders. I, also, know that Dr. O’Donnall at the Univeristy of Iowa has converted many of them to Indiana Pouches. That is what I have, and I am so glad that I do. I wore a bag on my leg for a while after my surgery. I am glad that I do not have to do that. It has been 16yrs. since my radical, and very, very few problems.

Sylvia L. Ramsey

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