Neo After 3 Years and No Sleep

hi Silk -

Hope you can get cat naps in to help with the lack of sleep at night. I had my RC in July 2010 and thought I wanted a neo, and ended up with an indiana pouch. Now I wouldn't change it for the world! Still pouch training and getting up at night too, but it's very "doable" and I'm getting more used to it every day.

I'd love to have magic words to give you to help, but I can only comment from my own experiences. I won't say its all sunshine and roses, because even as I sit here typing to you, I've spring a leak!! Gotta go. I'll keep thinking of you...

Lynda

Silk
Sorry to hear of troubles --- I opted out for IC because I had friend who had NEO and he likewise was not one of the lucky ones and has catherizes frequently and has to use diapers at night. So am a 'Bag Man' since 9/11/10 and can now get 8 hours of sleep using foley bag and I was not able to do that when I had my own bladder. Not sure what you will do I have heard of several folks who had their NEO's taken out. You will be in thought and prayers and will journey with you if you walk this way. Take Care, Herb

Pat thank you so much for your message.

Yes Soloway did the neo here in Miami.

I was in the emergency room and admitted to hospital last week for very severe pain. All blood work, cat scans, sonograms were excellent. The surgeon seems to think it was a "back-up of mucus" that was causing the pain and me not being able to entirely empty the neo by cath. I must now "flush" the neo once a day. I am fine with having to cath, have accepted this and even at night, was just so hopeing someone had an idea how to get some sleep. (night time cath???)

I have a follow-up appointment with the surgeon and will ask again about nights.

I do not drink an excess of water, only when thirsty, but I am sure others out there, I read on this site that about 30% of female neo's are hypercontinent and could offer some advise.

My surgeon recommed this site to me in 2007 and maybe, just maybe, someone out-there has the same problem and will share their experience.

Thank you and any and all suggestions are so greatly appreciated.

Linda

Silk..do you have Soloway do your surgery in Miami?
MD Anderson in Houston
The Indiana is a internal pouch which needs to be catherized ..you eventually get it trained to empty every 4 hrs or so and gradually increase it to overnight...6 to 8 hrs. I can go 8 but i drink very little after dinner.
Do you drink a lot of liquids? Or does your neo just have a small capacity? You probably should go back to your original surgeon and check out what the capacity is?
I have no solutions ..wish i did.
pat

Hi Pat,

Thank you for your response.

I am in Miami, where is MD Anderson? Does Holly have a bag? Not sure what Indiana is?

Do not have a problem having to cat during the day, and I have to go down two flights of steps plus 2 long hallways to the bathroom, sure getting my exercise, BUT would love to get some sleep.

Any help will be so appreciated.

Silk

I also hope someone here can give me some advise, a good night sleep even once a week would even be fantastic.

Thank you for your prayers!
Silk