I havent been on here for a while, so I just saw your post now. I was wondering how you were doing as you hadnt posted for a while. I am really sorry to hear of the problems you are having. I hope this all clears up for you soon. After reading Jims post, I would think your neo will go back to normal size like his did. Anyway, hang in there and know that we are all pulling for you.
Wishing you ther best,
DX Jan 2006 - T1B G3
RC - Neobladder June 2006
Ed, I had a retention infection about a year ago as well.
I spent 5 days in the hospital on every antibiotic known to man.
At one time they cathed out 1000 cc as well. Since then I have been able to void OK. I have a stricture (scar tissue at Neo to Urethra connection) that requires me to cath every other day. I was worried about a floppy stretched out Neo as well. My Neo seems to be fine, and after voiding my cath amounts are under 100 cc, which is where you want to be. Usually about 40-50cc.
If you are having trouble going, maybe you have a stricture as well.
As far as cathing, use what is comfortable. FR14, 16, what ever works best for you. Lube them up good. It is much easier if you don't have a prostate as well. Baird French tip 14 works best for me. I have a prescription for four a month, so like Mike after a week (3 uses) they are tossed. Good luck, and yes, seek help from your professional.
Just a minor set back. Keep the big picture in mind.
T1NOMX,Grade 3 Urothelial CIS (Carcinoma in Situ)
Prostate Capsule Sparing
U of M Hospital, Ann Arbor, Michigan
9 years 2 months ago - 9 years 2 months ago#33150by mmc
By the way, if I was you I wouldn't cancel my vacation unless the doctor says to.
To be on the safe side, you should probably self cath. Here is how to tell. Go all you can normally. When your sure you can't get any more out, use the catheter. I use a 16 French. It has bigger holes and a larger diameter so mucous can pass and so you don't spend 10 minutes doing it. I found a 14 to be just too small for me. Took too long.
If your infection is gone now, you should be ok.
Depending on the water and sanitary conditions you are in, you can wash the red rubber catheters with soap and water. I use mine for a week and then toss them in the trash.
Other people only use them once and toss them. If I were camping or something I would toss each one but usually I am at home, a client's office or in a hotel where soap sanitary conditions are fine.
Always carry spares just in case. I usually have a couple in my briefcase and I carry my 'in use' catheter in a little half-sandwich size zip log bag with the litte 3 gram gel pack.
So sorry Ed...the symptoms you had are classic with the neobladder for retention. Someone should have recognised it..but i'm glad you did and thanks to Mike.
The mechanism of incontinence and retention after orthotopic neobladder diversion can vary. Carefully performed urodynamic and endoscopic assessments can define the underlying etiology and may serve as a guide for proper treatment selection.
So you do need a follow up with your surgeon to determine what the problem is.
Holding 1100 cc's is really a lot and one would hope you now don't have a "floppy" bladder.
Having the foley in 48 hrs doesn't help with bacteria..i don't know why they didn't just have you self cath? There are new guidelines on the use of catheters in hospitals due to the high infection rates.
Hopefully your surgeon is a good one and can figure this out.
I am happy you have posted I wondered how you are doing. There is a difference between complaining and sharing the situation we are in. The fact that I am much better off than many has helped me keep perspective but having said that don't stop posting. We have to remember that our posts are read by thousands and are learnt from.
I would put a call into my Urologist if I were you and run the situation by them. Something is going on with you and they are the only one that can tell you what your next move should be.
Please keep us updated we are here for you.
T2 g3 CIS 8/04
Chemotherapy & Radiation 10/04-12/04
RC w/umbilical Indiana pouch 5/06
Left Nephrectomy 1/09
President American Bladder Cancer Society