Mary sorry to hear about the infections. I have an Indaiana Pouch it is like a Neobladder except I do not have a urethra but a stoma so I use a catheter to drain the pouch. Having said that please talk to your doctor about any suggestions I offer here. There are only two three things I can think to offer. Anything you can do to up your husband immune system as a whole is a good idea. Regular sleep, reduced stress and a balanced diet could help if they are needed. Talk to your Urologist about a referral to an infectious desease specialists. Now this one you really need to talk to your Urologist about please do not try this without doing so first. Some have found that irrigating thier Pouch is helpful, let me explain what that is in the case of a Neobladder. The pouch is made of is made of intestine and the intestine produces muchus to make thing keep moving along and that is a good thing while it is functioning as intestine but less so when it is a Neobladder. The Mucus is a good medium for infection to grow. Now as our pouches get older the thought is that they will produce less mucus and that is usually the case. But if for some reason I have found with mine if it gets upset it can start producing too much mucus again, if it does I go back to irrigating it once a day for a while. In my case that means while I have the catheter inserted I use a irrigation syringe loaded with 50cc’s of Normal Saline that I inject it into the pouch and then leaving the syringe in place pull back and aspirate the Normal Saline back out, bringing with it the Saline and any stray mucus. With a Neobladder you would have to first insert the catheter and follow the same procedure. I hope this give you something to talk to your doctors about and please give us a update and let us know what you find out.
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
You may find some helpful ideas by reading past threads on the subject. If you click on the SEARCH tab near the top of the screen and enter the term NEOBLADDER INFECTION you will be able to review more than 50 prior exchanges on the subject. Hopefully, that will provide some direct help, or at least help describe the range of possible issues.
I suspect that a member with a neobladder will reply to your query shortly, and may be able to help.
6/2015 HG Papillary & CIS
3 Years and 30 BCG/BCG+Inf
Tis CIS comes back.
BC clear as of 5/17 !
RCC found in my one & only kidney 10/17
Begin Chemo; Cisplatin and Gemzar
8/18 begin Chemo# 3
Begin year 4 with cis
2/19 Chemo #4
9/19 NED again
1/2020 CIS is back
Tried Keytruda, stopped by side effects
Workin on a new plan for 2021