Hi
My hubbie has been diagnosed with urinary retention - reason unknown but assumed to be neurological given other bladder tests. He is 45 years old
He has been told to self Catherize which he has been doing for about a month now - apart from first 4 days he has had a Uti . Pattern is as soon as he finishes the antibiotic the infection returns.
He is catherizing 4 tines a day with output of less than 400ml , taking d mannoise and doing all the hygienic protocols
Is this normal ? For the beginning or is he facing a lifetime of infections ?
The consultant is useless when it comes to practical help - seems too busy to talk to us properly about what to expect and even then he’s vague on his email re
Sorry posted too soon
Ctd.
We are going out of our minds with worry and I’m worried about my hubbie mental health.
Can anyone help me understand what’s normal to expect on the Uti side and how do people cope ?
Thanks
Ask about prophylactic dosage of antibiotic. I have similar problem and have one tablet per day for 3 months.
How many times a day does he self cath (CIC)? Does he do a normal void each time just before he self caths? Are you saying his self cath output is under 400ml each time or are you talking about total output? He should probably start a void log noting the time and amount of each void (natural and CIC). It could include fluid intake if he wants to be ambitious.
It is not unusual for complications early on in the CIC process including some pain, blood, false urgencies and UTIs. He should be near the end of that period now. I had two persistent UTIs the first six weeks of CIC and I blame it partly on the process itself and partly on my doctor not treating it quickly and agressively enough. I've been doing CIC for around 4 years now and my last UTI was well over a year ago, so "no" your husband is not facing a lifetime of UTIs but in all probably just experiencing a rough patch in the beginning as both he and his body gets used to CIC.
One thing that helped me was switching to a hydrophilic catheter. Does your husband have an obstructive prostate or just a neurological issue? If he has an enlarged and obstructive prostate I recommend starting with something like Coloplast's Hydrophilic Speedicath 14F with the Coude Tip. If he doesn't have an obstructive prostate then the straight tip is fine.
Technique also helps and if you do a little reading in this thread, find the "no touch, dive bomb" method. It's a way to use a hydrophillic catheter without touching the part of the catheter that enters the urethra.
Lastly, and perhaps most importantly, when you say "he has a UTI", does he have a SYMPTOMATIC uti or does his urine culture just come up positive? When you CIC, you only treat symptomatic UTIs and that symptomatic means something like real burning when urination, fever, etc. You leave asymptomatic UTIs alone.
D-Mannose is only of limited help and only for certain types of bacteria.
Again, the first month or two can be difficult for many who do CIC but it should start getting better soon.
Jim
I respectively and strongly disagree with Pepasan's advice about prophalactive antibiiotics. I am not familiar with his case and it might be right for him, but much too soon to even start thinking about it in your husband's case. You want to take as few antibiotics as possible and daily, prohphactive antibiotics is sort of the last resort.
Jim
Thanks for the replies - it’s super to get others experience. His issue is neurological.
He voids 4 times a day less than 400ml each time. He is using the speedicath compact.
We have just a sent away a sample today for culture - prior to that he had cloudy urine and stinging and was treated firstly with augementim and then ceflex.
I am hoping that it’s just teething problems - but we have been on a rollercoaster since diagnosis and so far it feels all a bit daunting and hopeless
I know we should be grateful That it’s not a more serious issue
Thanks for the replies - it’s super to get others experience. His issue is neurological.
He voids 4 times a day less than 400ml each time. He is using the speedicath compact.
We have just a sent away a sample today for culture - prior to that he had cloudy and smelly urine and stinging (is that symptomatic or asymptomatic ) and was treated firstly with augementim and then ceflex.
I am hoping that it’s just teething problems - but we have been on a rollercoaster since diagnosis and so far it feels all a bit daunting and hopeless
I know we should be grateful That it’s not a more serious issue
I had UTIs until I started using the lubricated ones like Jim states and since then I've been OK. Also I think he needs to drink a lot to flush out stale urine, and maybe 4 times in 24 hours is not enough in that case.
Make sure that he is not prescribed Cipro or Quinolones.
The European medicines agency (google and all five hours of it is available on Youtube. Miriam who posts here was one of the speakers ) had a conference in London today with patients from around Europe and enlightened doctors warning of their toxicity and long term side effects when prescribed for UTI's and prostate infections. It looks like their use will be kept for life threatening infections when their report is published.
Cloudy urine and some stinging are do not necessarily indicate antibiotic treatment with CIC. You really need a urologist very familiar with CIC or you run the risk of having your husband either over treated which is just as bad as being under treated. Remember, a positive urine culture does not mean he needs to be treated with antibiotics if he's basically asymptomatic, and again cloudy urine is not a sympton to be concerned about and some stinging is quite normal for the first month or two.
Jim
Jim
I could never self catherterize ....I would just faint !
I had a PAE ( Prostate Artery Embolization ) as my prostate was enlarged (100 ml)
The procedure is done without anesthetic and is painless.Its been very effective ....and would recommend having it done!
I have been self catheterizing for nine years...two uti's..... I think your husband should drink more water and be catheterizing 5/6 times a day. I know it is a pain sometimes but if you have an infection it is lingering in your bladder for a long time if you only catheratize four times a day. That gives it a chance to multiply..
I almost fainted the first time but it becomes second nature very fast. Glad your PAE worked out.
Jim
Thanks Again to everyone who replied. We are waiting on culture results to see what’s going on. And we are in the process of Finding another consultant who will answer our calls !!! Or even emails
It’s encouraging to hear that it doesn’t have to be Uti after Uti /- fingers crossed we will get there soon
Nine years ? Wow ! Have you even considered any procedures ? Hank
No, when I was first diagnosed with bhp....urologist just put me on catheters. no mention of anything else. Having said that, I have no problem with catheters and it has just been part of my daily life which I have learned to live with. Don't think I want procedures which may leave you incontinent or more ..Why fix it when its not broken....
How much has you prostate grown in nine years ? My one was 35 grms when diagnosed in 1995 and 75 grms by 2004 when I had GL .We have had posters on here with 200 grm prostates when they have been allowed to grow.
When mine regrew to 135 grms by 2012 and hospital staff tried to insert a catheter prior to my heart surgery they could not get the catheter past my prostate and had to use a supra pubic one.
I dont know. Never been checked since first diagnostic ... my catheter inserts very easy and always has done so it doesnt affect me ....yet ! will ask doctor when I next see him re size !
It is usually size that matters but someone I know had quite a small prostate and was having to self cath until he had GL. All depends on where it is pressing.
Good for you ! Very strong conviction on your part to stay with catheters for 9 years, without contemplating on surgeries. I've read on another forum of a man finally seeked surgery after 11 years, claiming he about had it.
Was there a reason that you were not offered surgeries ? I saw 2 uros, and the first thing they both offered was surgery, without any diagnosis, other than knowing that I had urinary retention. Hank