Watch N’ Wait 2017. How relevant is Self Cathing today?

Men's health
1

What did they say, “it was the best of times, it was the worst of times”.  Sort of like that in 2017 regarding a watchful waiting strategy for BPH/LUTS.

It is the best of times in that newer procedures such as Urolift, REZUM, iTind, PAE and now FLA are offering relief without the high incidence of sexual side effects of the old guard TURP, GL and HOLEP. But it is also the worst of times since all these procedures are still relatively new and not yet fully proven, and in the case of PAE and FLA, not usually covered by insurance.

This makes watchful waiting a different decision today than it was let’s say three years ago when I joined this discussion group and offered self cathing (CIC) as an alternative to extend the watchful waiting period.

Because the newer procedures are promising, less invasive, and less risk of sexual side effects, it is quite reasonable for men to pull the trigger earlier on watchful waiting than when the only alternative was TURP.

On the other hand, the fact that these procedures are still new, some still not covered by insurance, and that hopefully other less invasive procedures are on the horizon -- it is also reasonable to conclude that there has never been a better time for watchful waiting.

There are different watchful waiting strategies including drugs and lifestyle changes. When these don’t work, there is also the self catherization (CIC) option that can safely extend the watchful waiting period indefinitely in most men if they so choose.

I choose watchful waiting over TURP many years ago and when the drugs and lifestyle changes didn’t  work, I choose CIC which has kept me out of surgery while protecting both my bladder and kidneys.

Self cathing is not for everyone but it has worked well for me and many others. Unfortunately, other than in the SCI (spinal chord injury) community, urologists rarely offer this option to extend watchful waiting, even though it’s mentioned as a viable alternative in the responsible medical literature.

For those unfamiliar with CIC, and want more information, there are several ongoing threads such as the main one here:

https://patient.info/forums/discuss/self-catherization-an-alternative-to-turp-greenlight-holep--336874

 Jim

2

Well said, Oh King of Cathing!   After an unsuccessful (other than in the short term) Urolift, I have chosen CIC as my wait-and-see mode.  I've been cathing since Sept 2014, before and then a few months after my Dec 2015 Urolift.  My original uro-doc never suggested doing so, but thanks to you and others on this forum, I saw it as a viable path.  

Thanks again for your sharing about your successful experiences with this under-usedapproach.  So I still can't pee unaided, but everything else still works.  No small thang, as they say!  

3

Thanks Jim.  I've been able to share the knowledge of this board to a frend who is in the watchful waiting mode after having indication of CA in one of 15 prostate cores last year.  (I think the type of CA was not greatly concerning to his doctor who agreed with the watchful waiting.)  I think he at least reads the board from time to time.

I would add some advice to anyone going to see a urologist for BPH.  Get an experienced urologist, but not TOO experienced.  I went to one somewhere in his 60's, great university undergrad and medical school, another great school/medical center for his fellowship training.   After being left totally incontinent  and moving to another doctor at a university connected center, I see now that the equiment used and the procedures in-office, such as cystscopies, are so much better with the new doctor who has around 14 years of experience.  The office, the setup, the large flat screen (30 inches?) positioned so the patient can see what the doctor is seeing is SO much better.  The flexible smaller gauge scope gave provided an image of the urethra that was totally clear.  And, I absolutely never felt the scope when it was inserted and removed.  By comparison, the 1st doctor has an old CRT schope, 10 or 15 inches at best, and positions it on a cart slightly above your head so that you only get a fleeting view by craining your neck to the limit.  Also, the was water with a lot of air bubbles that really distorted the view.

IF my stricture repair is holding, I'm scheduled to have the artificial sphincter implanted in 20 days.   After nearly 17 months of constant draining (as opposed to dripping or just leaking), I am very tired of living in Depends and condom catheters.

 

4

@Glen: Get an experienced urologist, but not TOO experienced.  

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A very good point and it's a conodrum of sorts. On one hand, the older uro's (too experienced) have a wealth of knowledge and experience that the younger docs don't. On the other, their training was often on older equiptment that many of them still hold on to, as per your experience. 

I was pretty happy with my older urologist until he wanted to put me asleep and do a rigid cystoscopy to check for bladder cancer. I ended up leaving him because of that because the younger docs all use the less invasive flexible cystocope which is what I wanted. 

On the other hand, my older doc used an older but real time bladder scanner which gave similar pictures to what you get with in a hospital bladder/kidney study. The newer doc who ended up doing the flexible cystoscopy used a new digital portable scanner that only produces a number with no imaging to examine the bladder architecture. And this fellow was a bladder specialist no less, I was and still am somewhat speechless that he uses a less sophisticated scanner than my older doc and even the portable scanner I have at home.

FWIW there was a recently report in the medical and general literature that basically said if you want better care, see a younger doctor. It is a conondrum.

Can you share a little more about your history and symptons and why you ended up choosing an artificial sphincter.

Jim

5

Jim,

I was referred to the urologist by a cardiologist who was concerned about my sleep interruptions due to BPH.  (The ticker was fine.)  I'd had BPH for at least 15 years, tried one tablet of Flowmax that dropped my blood pressure to 65/30+ and unconsciousness.  Rescue squad took me to emergency where a few hours of fluids got the BP back up.  I never took another Flowmax and lived with BPH until the cardioglist referal.   The cardo said there were new meds that I should tolerate.  

I went to the urologist who did the IPSS assesment, and had technicians do a prostate scan (that involved a rectal probe as I recall.)  Then, another technician did a urodynamics test.  (And maybe a sonogram of bladder.)  

I don't recall the numbers (prostate size, PVR, etc., but the urologist said 1) medications were not an option and 2) if I didn't have surgery, I could end up with a stretched  and "dead" bladder, kidney damage and failure, and spend the rest of my life on a catheter.   He offered that my health otherwise was so good that I could live to 100 if I took care of the prostate.  (I was a very active 76 at the time.)   I had never had an accute retention event, never had a UTI, and my PSA was low.  I typically was up 3-5, sometimes 6 times at night, but would get right back to sleep.

I was concerned by what he said and scheduled TURP within the month.  I inquired through his nurse about Greenlight, as what I read said it had less bleeding and one could expect to be back on their feet quickly.  He agreed to do the GL, which I had in early March 2016.  I had the surgery on a Thursday, was released to go home and told to come in the next day to have Foley removed, which I did.  There was a lot of soreness in the perineum, and around midnight on Saturday, I couldn't pee.  Finally, I woke my wife and we went to the ER where I was in extreme agony with acute retention.   Even though the ER was not more than 200 ft, and in the same hospital where I had the GL, there was a wait and then the paperwork (insurance, etc.) and then they insisted on doing a bladder scan before doing the catheter.    (I'm sorry for being so long-winded... just doing a core dump.)

The Foley stayed in for a week, came out and I was incontinent, and have been ever since.  Two months later, the doctor did a cystoscopy, saw a lot of debris and inflammation, and scheded a Gyrus Turp a couple of weeks later.  That was done, things healed, but I was still incontinent, and remain so today.

I found a new doctor who is an assistant professor at a medical school in a city 30 miles away.  I saw him, and he was really upset with my story.  I had my  records transferred (I had to pay for that!), and surgery to implant the AMS 800 was scheduled this past December.  The surgery, and once I was "under", he did a cystoscopy and, unfortunately, found two strictures that was never mentioned by my first doctor in my records..  He did a balloon dilation but was unable to go ahead with the implant because of the strictures.    Since then, I've had a second procedure to relieve a thin stricture, and so far, it seems to be holding, so I hope the implant on 19 June is scheduled.

Why am I choosing the artificial sphincter?   Living in Depends (8 to 10 a day) was awful.   Really depressed kind of awful, and I was an upbeat person before.  The condom catheter with leg bag is better, but is still a real hassle.  Beause of the constant drainage of urine during the day, the last time my wife and I had sex was two nights before my GL procedure in early March of 1916. I sleep in the Depends, but sleeping on my back causes the bladder to get full enough (250-300 ml typically, and infrequently 400 if I am exhausted) to wake me 3-5 times per night.

I tired several months of PT at the 1st urology office, trying to regain continence to no avail.  That included weeks of using a STM device with an anal probe.  Nothing helped.  I suspect that the fact that one of the strictures was "right at the external sphincter" according to my new urologist.   I've talked by phone with two men who have had the AMS implant (one was with my new uro) and they both are highly satisfied with the result.  ( I believe one said they is a minor occasional drip requiring a light pad, and second is totally dry.  Both of these men had had their prostates removed because of cancer, and later became incontinent.

6

Sorry, at end of 6th paragraph, it should read "the surgery is scheduled for June 19."   And as a post script, I'm flying out to California tomorrow to celebrate  graduation of my granddaughter from college and our grandson from high school.   It's my first trip in 2 years, and I hope the catheter and legbag are not a problem at securtiy.  

7

Hi Glenn,

Sorry about what you had to go through. You're not alone in what happened and it's just such a shame.  Don't know a lot about the AMS implant but I wish you all the luck and hope it will bring back more quality to your life. I am sure your experience will help both your friend and others reading your story to seek proper guidance from the beginning.

Jim

 

8

Jim,

Google AMS 800 for information.  The design is over 40 years old, with improvements along the way.  Being mechanical, it's subject to failures and wearing out as could be expected.

9

I read the Mayo report and some others and it appears to have a very good patient satisfaction index. 

I am assuming that you have been tested for and have no retention, because certain cases of incontinence can be secondary to retention. 

Jim

10

Just make sure you empty your bag before getting into the line at Security, to be sure you have less than 4 oz of the Golden Fluid in your bag...     I offer this in jest, but only partially.  TSA  can be a real pain.  Really.

11

There was the urodynamics at the beginning of the saga with Dr. #1.   Then, there were some voiding tests along the way where they would fill the bladder to see how the flow was.  But, there have been no subsequent scans to see if there was post void retention.  Since I seem to drain to the point of being empty if I'm on my feet during the day (can't push anymore out so there's a steady drip.   I took various meds when they were guessing at OAB as cause, and they didn't help.

Since Doc #2 said there was a stricture "right at the sphincter", I am guessing some damage to the integrity of the sphincter occurred.  Sure, I would love to have natural function return.  Being 78.5 years old now, I'm desperate to be able get out of bed in the morning and not spend a long time cleaning, applying 2 or 3 layers of skin prep so that the condom will come off at night.  While I stand on a mat waiting for the prep to dry,  before putting on the condom cath, it's continual leaking.

I asked Doc #2 whether there was any chance that getting the strictures cleared and stable would cause me to regain natural continence, and he said he didn't think so.  (I suggested going back to all the Kegels and related exercises.)  I'm guessing he suspects, or even knows about damage to the sphincter from the GL, Gyrus Turp, or something else, but doesn't want to say so.   So if I have have the AMS implanted on 19 June, 6 weeks later I can have the device activated.  I plan to put on some shorts and go for a long walk when that happens.

12

Fer sure, I'll do that!  There's a restroom right before security.  If the line is less than 5 minutes, i'm good.

13

Your the best Jim  Way to go  Ken

14

It is also "the best of times and the worst of times" in terms of the near-infinite access to information which is unprecedented in human history. But the problem is that much of it is "fake news" and is not just limited to politics but also science and medicine.

So how do we sift through all the information thrown at us regarding BPH/LUTS by doctors, patients, drug companies annd advertisers? It takes a lot of patience and a clear mind to assess what is real and what is hype. Forums like this one can be  a double-edged sword and we must be careful to do our due diligence as we only have one urogenital system.

This thread should have 500 followers - not 5 - as it speaks to the plethora of information out there. The fact that only 5 men thought it important enough to follow it already tells volumes about the need for patients to analyse critically and not just accept what their doctors or friends promote. This is no place for superficial thinking!!

Neil

15

Well said Neil. With so much information out there, often in conflict, it can sometimes take years before one reaches some clarity. And yet, many men seem pressured into making a decision not in years, but often minutes, hours, days or weeks. Be it doctor pressure, family pressure, peer pressure, or even pressure from well meaning individuals on forums like this.

Watch n' Wait therefore -- be it drugs, CIC, whatever -- therefore not only serves a medical purpose, but a mental purpose. Because these types of procedures and surgeries should not be gotten into lighly or hastily.  It's not taking the word of one doctor. Nor just reading one study. Or hearing a few success stories from this procedure or that. It's really studying up on the whole picture until you're comfortable with the decision you're making. 

Of course, this is just one man's opinion, and it may not work for everyone. In fact, it might not even work for me with some future medical problem where I may not have the time and/or resources to Watch n' Wait.

But fortunately, unlike say a cardiac event, BPH/LUTS in general.comes on slowly and in stages, giving us a little time to make the right decisions.

Jim