Self Catherization. An alternative to Turp, Greenlight, HoLEP...?
Posted , 82 users are following.
Since I posted a thread about self-catherization -- more formally called Clean Intermittent Catherization (CIC) -- there have been a few different discussions on the topic in various threads. I thought it might make sense to bring those discussions over to a dedicated thread. With that in mind, I will summarize and/or copy and paste some of what was said before into this thread for better continuity.
My story in a nutshell. 68 years old with BPH probably since my late 20’s. Watch n’Wait strategy with on-and-off trials of Tamsulosin (Flomax) with poor results. Symptoms were the normal retention issues resulting in frequent urination with incomplete emptying, urgency, and having to go to the bathroom at night in increasing frequencies. Near the end, two or three uti’s per year often accompanied by gross hematuria (bleeding).
Two years ago things got significantly worse and I couldn’t urinate on my own without physically pushing against my bladder (Crede Maneuver). That led to another trip to the urologist where ultrasound showed significant retention and hydronephrosis (water in the kidneys). I was told I needed an operation (this facility primarily did Turps) but first I had to rehabilitate my bladder because at the time it was too flaccid (stretched) for a good surgical outcome. I was given the choice of wearing a Foley Catheter for six weeks, or a program of self-catherization (CIC) in order to decompress the bladder. I chose CIC so I didn’t have to wear a Foley 24/7, and also because I felt it put me more in control.
Six weeks later my bladder was rehabilitated to the extent they could do a Turp, and the hydronephrosis was gone. After doing some research and a lot of thinking I decided to put off the Turp due to the potential of irreversible side effects, primarily retrograde ejaculation. Two years later, I am still doing CIC while waiting for newer procedures with better outcomes and fewer side effects.
I will detail my experiences with CIC in following posts -- but to summarize, once mastered, it’s a painless five minute procedure that allows you to empty your bladder completely any time you want. With CIC, I therefore have no retention issues, no urgency, and in most cases sleep 6-8 hours through the night without having to get up and go to the bathroom. No UTI’s in over 18 months. And because my bladder has been partially rehabilitated, I can urinate normally about 50% of the time without using the Crede maneuver. My IPSS Score (International Prostate Symptom Score) would be Zero (the best), albeit with a little mechanical assist.
As of now, nothing that I have read about the various current procedures has tempted me to have an operation. That could, or could not change, in the future, but the nice thing about CIC is that you can stop it any time you want with no repercussions. The caveat is that CIC should be done under the supervision of a doctor who will monitor your BPH as required. Similar to seeing a doctor on a regular basis during a Watch n’ Wait BPH strategy.
I know many of you here have already had operations like Turp, and in most cases people seem pleased with the outcomes. CIC certainly isn’t’ for everyone, and I can understand why someone does not want to carry around a urinary “tool box” with them. On the other hand, with practice, it’s not the traumatic and scary procedure some think. I can honestly say right now that for me it’s about as traumatic as brushing my teeth.
I’m offering my experiences and thoughts on CIC for any of those who haven’t yet made up their mind on an operation. It even can make sense for those of you who don’t need an operation yet, but want to increase their IPSS quality of life score. In fact, wish I had done CIC earlier while on Watchful Waiting. Didn’t realize how much BPH had been affecting me for most of my adult life until I was able to empty my bladder completely.
CIC doesn’t have to be a permanent solution, it could just part of a waiting strategy like I’m on, until better surgical operations are developed with better outcomes and fewer permanent side effects.
For any number of reasons, the majority of urologists don’t seem to offer CIC as an alternative to surgery. My current urologist doesn’t as far as I know, but he’s OK with what I’m doing because it works for me. So, either you have to find a urologist you can convince to go along, or go to some of the major teaching hospitals where CIC is probably more in use and better understood. That is where I was taught, albeit not very well, but that is another story.
Jim
19 likes, 2092 replies
glenn77 jimjames
Posted
I recently had contrast images done. Here's the first one when partial filling had been done. http://www.brinkleys.org/users/tsl/Files/RUG.JPG (I'll post the filled bladder next.)
jimjames glenn77
Posted
Nice images! Are we looking at ultrasounds? MRI's? Was this just an imaging study or part of urodynamics? I noticed what looked like a syringe barrel at the bottom left of the first image. Were you catheterized at the time? Also a little background on why you had the imaging and a summary of the report would be great. Wish I got that kind of contrast on my home unit!
glenn77 jimjames
Posted
Jim,
They are x-ray images. I saw a specialist in California who concentrates on reconstructive surgery, thinking I might be able to have my strictures repaired by him. The strictures were (are?) right at the external sphincter. The complexity and location, and the risk and very long recovery time for that urethroplasty procedure is such that I decided against going that route. (Recall that the strictures developed after GL for BPH, and led to a high level of incontinence for me.) I came back to my NC doctor (not the one who did the GL), he did another urethrotomy, this time using the Olympus plasma loop, and the results have been excellent. When I went back in for a cystoscopy, the urethra was found to be clear and smooth. A week from today, I'm finally having the AUS implant, so I should be able to be free the Depends and condom catheters around Christmas when the healing is complete and the device is activated.
After the last urethrotomy with the plasma loop, i've measured the flow rate when I get up a night. (It doesn't all leak out when I'm on my back.) My average flow rate is around 28 cc/second, and has been as high as 32 a few times.
jimjames glenn77
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Thanks for the explanation and glad the urethrotomy went well. Good luck with the AUS.
Jim
hank1953 glenn77
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Glenn:".. My average flow rate is around 28 cc/second, and has been as high as 32 a few times."
How I envy you Glenn. 😀Hank
zdzislaw glenn77
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glenn77 hank1953
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Hank, .. if it isn't one thing, it's another. For me, it's been 20 months of either Depends or condom catheters and a bag strapped to the leg, not to mention an abrupt end to the sex life. And five procedures already requiring anesthesia. I'm hoping next weeks surgery will help me regain some semblance of normality.
hank1953 glenn77
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glenn77 hank1953
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Don't know... I noticed it had disappeared . I did another upload for you. FYI, this is how it was done. I was lying on a table, on my side but tilted at 45 degrees. A large x-ray plate was slid under me and an x-ray machine positioned over me. The doctor came in in a lead apron, long leaded gloves for the arm and with some gauze impregnated with contrast solution looped it around the glans of the penis and used it to apply slight traction. With the syringe, with some sort of adapter that he said he had a patent on, a short tube was inserted through the meatus. He then slowly injected a 100 or so cc of a contrast fluid up the urethra and into the bladder. (He commented on the lack of resistance at the sphincter as he did this.) While he was still applying slight pressure to the syringe, he had his assistant expose the xray. RUG stands for retrograde urethrogram, meaning that the contrast liquid is flowing upstream. Here is the link to the RUG image: http://www.brinkleys.org/users/tsl/Files/RUG.JPG
I only have copies of the images (RUG, Full Bladder, and VCUG) because I asked, and he invited me to used my cell phone to capture the large format images while he put them up on the lighted wall fixture, whatever then call that. The quality is excellent, so I can magnify the area of the urethra with the strictures for viewing. The image I've unloaded is a lower quality screen capture that doesn't give my name, etc.
hank1953 glenn77
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Glenn: " .Recall that the strictures developed after GL for BPH, and led to a high level of incontinence for me...
Hi Glenn, are you saying that your strictures caused incontinence ? Can you explain how ? Hank
glenn77 hank1953
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hank1953 glenn77
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glenn77 hank1953
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I assume the GL procedure that was done for BPH, or the cleanup procedure 6 weeks later did something to it. I had median lobe enlargement, so that probably did something to the bladder mouth. With the first urologist I had, there's no telling what happend.
glenn77 jimjames
Posted
Here's the second one with the filled baldder for comparison.
http://www.brinkleys.org/users/tsl/Files/Full.JPG
dennis47445 jimjames
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Jimjames, thank you for the update. Hopefully, I'll get there myself one day!