Constant utis since self catherisation

Hi pepsan

We were with our consultant this morning and he suggested the low dosage antibiotic - to be honest while he did prescribe it, he kinda painted a doomsday set of scenarios which basically more or less ended In him saying that the bug will become eventually immune and then we will run out of antibiotics and then there’s nothing left to do.  Like I said before we find him very difficult to deal with and are looking to switch to some one more compassionate at least.  

Just wondered if you mind sharing your experience a bit more on why you too are on the long term antibiotic - and what if any advice or view your doctor gave you.  

To be honest my hubbie is at the stage (and only 6 weeks in) were he feels like stopping the whole thing and accepting his fate - certainly felt this morning that the neurogenic bladder rentention was a terminal illness

Apologies if I am unloading or being insensitive / trying to understand if this is a consultant negative outlook or a real one . 

Thanks 

The reason I get UTIs is that my prostate and bladder neck conspire to prevent full voiding of the bladder, so unless I self-catheterise, about 150 - 200 ml of urine remains in my bladder allowing bacteria (E-Coli) to multiply.

My urologist is reluctant to do unnecessary surgery and has prescribed Finasteride (since the Tamsulosin I previously had tended to make me dizzy and caused Retro-Ejaculation)

The hope is that the Finasteride will in turn shrink my prostate enough to reduce the blockage enough to come off the Nitrofurantoin. However, when I attempted this a few weeks ago the UTI symptoms returned again so I'm back on the prophylactic dose. After a month or two more of Finasteride, I'll try again, as my Urologist also doesn't advise long term use of the Nitrofurantoin. But my Prostate is apparently not greatly enlarged, and I do have some cancer cells (the mildest, least dangerous type) so there may be a stricture that won't be affected by the drugs. (During the day I pee normally, but do CIC at night so I have fewer night-time visits to the toilet, disturbing my and my wife's sleep.

I may ask whether more frequent CIC (Clean Intermittent Catherisation) would be worth trying. However, I won't do this without advice as the process (as you are aware) of CIC also brings risk of infection.

Catch 22 !

As I mentioned before, I think you have to see another urologist or two or three. I'm sure hundreds of thousands (maybe more) people self cath every year and most do quite well dealing with UTIs. Prophactive antibiotics is the LAST resort and your husband is nowhere near that. You need another doctor right away.

Jim

Thanks Jim James

Seems the urologists thinks that my hubbie will never be able to get rid of this bug while he self catherises because he keeps reintroducing the bug into his system -from his skin etc and has no resistance to it( opinion rather than fact) the 6 week antiobic was the option before he would recommend a Supra pubic catheter.  There isn’t any other solution he tells us cos my hubbie bladder is a nerogenic issue and there isn’t any operation or drug that can fix it.  My husband flatly refuses Suprapubic catheter - he came home today and wrote his will .

We have an appointment with another urologist end of July.  Thank you all for your support - I am clinging to the hope that the Uti will resolve despite what the urologist says.  

2 months ago he was a super fit 45 year old man and we only really happened upon the bladder issue because he had a mri/X-ray for rib pain and the bladder was enlarged on the scan. Since the initial diagnosis it’s been one disappointment after another and he is losing hope 

I had UTIs until I started using pre-lubricated catheters, if very careful the tip goes in without touching any skin.

My Urologist's PA, a woman, told me that contrary to what one would think correct use of catheter actually makes it less likely to get infections as the stale urine is flushed out quickly.

When you self cath most "UTI's" don't need treatment with antibiotics. How symptomatic is he? I can't say for sure from here if he is being over treated or not so good luck with your second appointment. Anyway you can get into see a uro earlier? If possible, try a major medical center and try to find out which uro's treat the SCI (spinal chord injury) community. Those uros have the most experience with self catherization and UTIs. Some uro's are clueless

Jim

In general that is grue, Mike. I had one or UTIs a year prior to CIC, and if you discount the UTIs I got the first few months learning, I've only had a couple in the last three years or so, and only one of them probably needed to be treated

Hi Jim,

Thanks to you I have the bladder scanner, I've actually taken a break from CIC for a while because I'm confident I never hold more than 135-200 PVR  and so far no UTI after stopping.

I want to see if my PSA goes down because I had a high reading of 9.5 and the PA told me it might be due to CIC. I know not everyone agrees that it has anything to do with PSA but I'm curious.

Regards,

Michael

Hi Mike,

Glad the scanner is working out and more important, glad your PVR is in a safe range.

Jim

Hi Mike, please share how you brought your PVR down. FLA ? Meds ? Anything else ? Thanks. Hank

I think that initially we treated the first based on cloudy urine, the second one was cloudy ( but more like soup and foul smelling) with urge to pee every few mins, and third one similar.   The consultant said its our call and risk to see if cloudy urine leads to something more serious.

We live in Ireland so its a small community - to be fair the consultant has practiced in the Mayo clinic so assume he is knowledgeable.  We are trying to get a second opinion - my hubbys cousin is a nurse who looks after prostrate cancer patients so has some contacts and is trying to fasttrack given his mental state.

Its kinda ironic - 2 months we were devastated by the news of catherisation - now we are crossing out fingers that we can do it long term. .

Thanks again Jim James

 

I don't want to sound like a broken record but you need a new doctor. You do NOT treat anyone who self caths with cloudy urine. If that was the case I would have been on antibiotics for most of last year. Cloudy urine by itself usually means NOTHING. It's just leucocytes (white blood cells) usually  from normal inflammation from the CIC process. I don't care if your consultant practiced in Mayo or not, but it sounds like your husband may be  unnecessarily treated with antibiotics. Is this doctor a urologist or a GP? What are your husband's actual symtons? Again, I think the problem is not the self catherization but a doctor who is not as familiar with self catherization as he should be. This unfortunately is more common that it should be. Sorry to be harsh, but the message is really hopeful because based on what you said, I think your husband may be able to continue with CIC if he's under proper care and supervision. As to a new consult, it's imperative it's with a urologist who is experienced with CIC. A large, teaching hospital would be the place. Ideally, he would see a urologist who deals with the SCI (spinal chord injury) community, because those urologists have the most experience with CIC.

Jim

Thanks so much  jimjames - you aren't being harsh at all , I really appreciate your help.

 the consultant is a urologist - we are in the process of moving as we speak and I will keep going until we find one who is helpful.

So I can get my head around this ( sorry if I am being stupid)

Cloudy urine only - don't treat

Cloudy urine ( even if its soup like ) and foul smelling - ?????

Cloudy urine & either fever or pain or ill like symptoms - treat

Thanks

 

I am not a medical professional but the guidelines I was given by a medical professional are when you are self cathing you only treat if symptomatic even with a positive urine culture.

cloudy urine -- Normal. Not considered a symptom you treat. No antibiotics.

cloudy urine, soup like and even foul smelling -- No antibiotics. Try increasing fluid intake and cathing more often.

burning painful urination, fever, ill like symptons -- See your doctor. he will do a urine culture and may decide to treat with antibiotics.

Thanks JImjames - that is so helpful and so clear.

We have a new appointment with a new urologist on Tuesday - fingers crossed.

Whatever the outcome you have been very kind to reply to all my concerns,

 

Hi Hank,

I did FLA, I think it helped a bit but did not help with the large median lobe probably - I haven't had another cystoscopy since the FLA so hard to say for sure how much it helped - I was in retention when I had the FLA so it must have done something. So I take a combination of Tamsulosin and Cialis and that makes me kind of normal - if I stop after a few days the stream starts to get weaker and PVR increases - I haven't tested stopping meds indefinitely to see if I would basically go back to retention without CIC.

I did CIC for over a year, the last few months before I took the break I cut back to just before I go to bed and first thing in the morning. I believe my bladder has rehabbed a bit, but it's not scientific just seems to be better.

Having said all that I am not happy I'm taking the meds, so I'll probably go for more surgery at some point, now I'm not in a huge rush. Dr K offered to do another FLA and I'm considering that, as well as some of the other procedure such as Rezum. But right now after 2 FAILED PAEs in 2016 and the partial success of FLA in 2017 (Feb) I feel like holding off a bit.

Regards,

Michael

Whatever the problem is...IT IS TREATABLE....I have been self catheratizing for 9 years.......It is like cleaning your teeth to me.... Please tell your husband to not despair....it is not the end of the world.  I have been on cruises and foreign hoiidays and always take a supply of catheters with me with no problem. I have had two infections in 9 years...last one cleared up after 5 days antibiotics.  As previously stated hygiene is of paramount importance and once you get into a routine it becomes second nature.  It is surprising how many men out there are selfcathertizing. !! 

Thanks Mike for sharing. I am curious because I am in a similar situation, except I have not had any surgery yet. At one point I was very excited about FLA and would have had it done if my symptoms had worsened.

I am currently on Doxazosin and self cath just once a day before bedtime, with PVR around 200ml. During the day my PVR is around 100ml. Hank

@Hank: At one point I was very excited about FLA and would have had it done if my symptoms had worsened.

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I think everyone was excited after the first three people reported successful results without sexual side effects. Hopefully we've all learned a lesson that a few anecdotes are not representative of larger populations and certainly no substitute for Phase 3 peer reviewed trials.

Jim

Hi Jim, FLA still looked very good after 8 or 9 results reported. Actually, if not for you putting on that skeptic hat questioning its insufficient long term data, I might have joined the Dr K bandwagon already. For that, I feel I owe you mucho sardines. 😀 Hank

I could very well stopping CIC by upping the dosage of doxazosin and/or by walking around the block just before bedtime to lower my bedtime PVR. However, I like the mental assurance that my bladder is empty at least once a day and CIC is still easy for me currently. Hank

At least a case I was as hopeful as everyone else but the overreaction and overblown implied results based on a just few patients raised all kinds of red flags. And btw Dr. K. never made such claims, he was quite conservative in his expectations per what he posted over a year ago on another web site, but you would never know that from what was posted here.

Jim

Jim I haven't kept count, I know of one guy who had unfortunate complications, and I think Motoman who originally was really happy is looking to do something.

My feeling is FLA is a the best try if you don't want sexual side effects, Dr K and whoever else does it surely are getting more proficient. I suspect that it must be very hard for surgeon to determine how aggressive to be with FLA. Less aggressive and not enough is taken off.

Turps and the like are a more sure way to open the passage, and probably longer lasting. Of course chances for Retro then go up quite a bit.

Rezum seems like an interesting idea but sounds like it has very mixed results. PAE might be a good try but I after two failed ones don't believe the surgeons really know what they are doing. Just hope that the correct portion of the prostate gets embolized, like throwing the dice.

Hi Mike, did you have large median lobe ? If you did, do you know the size of it, in term of IPP measured in mm ? From the very same reasons you described above, I am still interested in FLA, above all others, except now with more realistic expectations.

Hank

Hank,

Why? The results aren't any better than Rezum. The sexual side effect profile seems similar or worse. It costs a ton of money. And because there is no clinical data we not only don't know the durability but we don't know if there can be any consequences that have not come up yet. The appeal of FLA to me was the MRI guided precision, but for whatever reason that hasn't translated into any better results than other procedures. And as nice and caring as Dr. K. seems to be, he's not a urologist so he's stepped outside his training to do this procedure and may not be able to analyze the entire situation as well as a urologist.

Jim

Hi Mike,

I couldn't find the post of mine you are answering, so not sure what "I haven't kept count" is referring to.

As to the rest, I respectfully disagree that FLA is the best try. It's a reasonable try, but the results I've loosely compiled seem no better than some of the other less invasive procedures like Rezum, and that includes sexual side effects. Sexual side effects with Rezum seem to run around 10% and FLA based on the small sampling here isn't doing any better. I'm not so sure about PAE either, so my first choices now would be Rezum or Urolift depending on the situation probably with a nod to Rezum because not crazy about stuff being left in my body. My opinion could change if there was more FLA data but even Dr. K's study, still unpublished, is very small and I don't believe is blinded or peer reviewed.

Jim

Hi Jim, sexual side effects vs rezum is about the same, I think. There are 2 things that I like more about FLA, still. One is not going through the uretha. Two is it doesn't hurt as much as rezum. Some people described resum as 'hurt as h!!!'. Of course there is the money issue, but one can always cut down on sardines. 😀

I believe that jay111 connected the bad outcomes of FLA with small prostates, which doesn't bode well for me. This bothers me more than anything else. Now

I just wonder if those with failed FLA have large median lobes, or not. Hank

The pain reported with Rezum was only in the cases where twilight was not used. As to not going through the urethra, the only advantage I can see is if it cut down on sexual side effects, which it didn't. At this point I still see only disadvantages for FLA vesrus Rezum. Save your money and buy me some sardines instead.

Jim

Thanks Jim. However, I have seen many reports from Rezum patients of bad post-op pain and suffering, one is currently happening in another discussion. As for FLA, no one has reported such thing that I can remember out of the 20 or so cases. Sure, some FLAs did fail, but they were not obvious until months afterwards. Hank

Hank,

I read some difficult and painful recoveries from FLA and again, I think you will find most of the Rezum pain stories were when it was done without twilight. Hopefully, anyone considering either will carefully read the threads for themselves.

Jim