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
GInAndPlatnic46 jimjames
Posted
So sorry most of that post was cut and I really dont know why. When I have patience I will return and finish it.
jimjames
Edited
Hi Patrick,
Have you tried the no-touch "dive bomb" technique described earlier in this thread? It pretty much eliminates any contamination by your hands. Have you
had a UTI yet? I had a number early on in the process mostly due to I think
the trauma of my body adjusting, although from what I've read, your body has adjusted very quickly to the catheter. Later on my uti's became less and less frequent, and haven't had one in over a year. Some here have issues with UTIs and CIC but just as many hardly every have them.
Jim
patrick45945 jimjames
Posted
Jim,
You will be happy to know that I have used your "dive-bomb" technique almost exclusively and from the very first lesson with my cath nurse. Yes, I have adapted quickly and am very grateful for that after reading here of others having a rough go of it, including you! I remember being SO happy after my very first self-cath was so easy, I wanted to do a Snoopy Happy Dance!
Knock on wood, I haven't yet had a UTI and am very mindful when doing CIC. I have forgotten to use the MED NAP a few times but so far have escaped unscathed, and have ordered D-Mannose as has been recommended here. Do you use it?
Thanks again for your encouragement and support with my CIC journey...I hope to pay it forward with others going forward!
Patrick
patrick45945 jimjames
Posted
Also, FWIW, this will come as no surprise to those of us who are committed to using CIC as an alternative to more intrusive surgery which is likely to have undesirable, irreversible side effects with little chance of success.
Today I made my semi-annual trip down to the VA Medical Center at Bay Pines, Florida to see my VA cardiologist to renew my prescription since I now get my AFib meds from the VA (the Medicare donut hole was killing me!). Anyhow, when he asked if I had any changes since last visit, I told him about my urinary retention diagnosis and how I was treating it with CIC. He looked at me like I was crazy after I had to explain what CIC was and asked why I didn't let the VA take care of this for me, obviously inferring that surgery and prescriptions are the only way to fix what's wrong with me.
It didn't take long for me to realize that I was talking to a doctor deeply indoctrinated in traditional medicine who had little faith in alternatives to standard resolutions to specified medical conditions. I just sat and smiled as he shrugged his shoulders and said "It's your decision..." Right on, doc, now please renew my prescription and let me get out of here.
What is the term for the current trend where doctors share decision-making with patients? Today was another example of the importance and value of being your own #1 health advocate!
Patrick
jimjames patrick45945
Posted
Patrick: "What is the term for the current trend where doctors share decision-making"
It's called shared medical decision making or simply shared decision making. It's part of what is termed a tient centric approach to medicine as opposed to the traditional physician centric approach. The physician centric approach is where we talk and they don't listen 😃
As physician's like to describe it, shared decision making is bringing the patient into the decision making fold by educating and then discussing options. But as we know, and as your example points out, it's often the opposite, with the patient educating the physician and then guiding them to a shared decision 😃 In the end, it's our body and the decision should be ours.
Curious, how moist are the med naps you use? I used to use the bzk brand of antiseptic towlettes but found that many of them were dryer than I preferred.
Currently I just use a bottle of providone idodine with either a small gauze pad or a piece of toilet paper but have thought about swtiching
to using a bottle of benzalkonium chloride which is the active ingredient in both med naps and bzk brand towlettes. That said, the towlettes are
more convenient for out of the house, assuming they are moist enough.
Jim
jimjames
Posted
in second paragraph... should be "patient centric approach"
patrick45945 jimjames
Posted
Jim: Curious, how moist are the med naps you use? I used to use the bzk brand of antiseptic towlettes but found that many of them were dryer than I preferred.
Jim, I do use the BZK ANTISEPTIC TOWELETTE made in nearby Brooksville, Florida and find them quite moist and satisfactory. In over 3 months of use, I do remember ONE TIME opening one to find it totally dry, but discarded it, grabbed another from the same batch, and carried on. Since they are provided with my SpeediCath shipments, I use them at home and on the road.
Patrick
jimjames patrick45945
Posted
Patrick,
You use the Med Nap brand, is that correct? I used to use the Dynarex brand which had the drying out issues depending on the batch.
Jim
Howard31850 patrick45945
Posted
I use Dynarex Obstetrical Towelettes. They open to 5 in by 7 in but I leave them folded as they come for a good wipe. I've never had a problem with them being too dry or too moist.
Howard
patrick45945 jimjames
Posted
Jim,
Yes, I use the MED NAP brand which are included with each shipment of SpeediCaths. Very convenient. My supplier is excellent, keeps in touch, calls when I am running low to make sure I don't run out. They also provided the cath nurse that came to my house to teach me how to CIC which made the transition immeasureably much easier!
Patrick
george29339 jimjames
Edited
I am not sure how to navigate this site so I will post a couple of times to see if I get a reply.
I am interested in the possibility of a self-treatment to open up the urethra in the prostate with a balloon dilation. Ideally this will result in relief of BPH symptoms for more than a very short time. My goal is to determine a dilation which will not cause any damage, scaring or stricture. Maybe the answer will look like a % increase along with a rate of increase (for myself I am considering starting with 14FR and ending up with 24FR in 4 or 5 hours). The methods I am considering are a dual balloon catheter or just a Foley. I would need to figure out how to insure that the balloon is safely past the outer sphincter.
I have seen reports that balloon dilation for BPH is done on a regular basis in other countries like China. I also found results of 5 year follow-up of a trial treatment for BPH called Optilume. The treatment has been approved by the FDA for urethral strictures and consists of a balloon dilation with a follow up application of Paclitaxel (a chemo drug). The method of treatment includes a dilation and the drug is used to keep scar tissue and stricture from developing. I also read that there were better results with a smaller size balloon (but could not find the size) and more success for men who had lower PVR to begin with. I wonder if there is a risk of the one-time use of this chemo drug.
So I read here that Fred has been using a 30FR for CIC. So this is 10mm (3/8 inch diameter) I am not sure if this is done by using the large catheter along the entire length of the urethra or by inflating a Foley to 30FR in the prostate area. There are so many pages of discussion.
Here is what I have gleaned from reading, CIC Benefits:
Emptying of bladder
Reduced effort and trabeculation (thickening) of bladder walls
Risks:
False passage
Damage from the tip of the catheter to the wall of the bladder
Scarring and recurring stricture
UTI (upper tract infection)
Balloon Dilation risk:
Scarring and stricture
Damage to the outer sphincter and incontinence
Possibly very short term benefit
graham46099 george29339
Posted
*"Risks:
False passage
Damage from the tip of the catheter to the wall of the bladder
Scarring and recurring stricture
UTI (upper tract infection)"
My uro mentioned that false passages are only really likely to happen if they use the metal versions of selt caths, which I don't even think are available anymore?? Also, it would have to be severe force to do so, and you would be in extreme pain before you even got there. Have you ever pressed a cath tip at the end of your bladder? Wow that is a gentle reminder that you have gone in too far but that in itself, is not a false passge.
UTI - this is mainly down to bad hygiene but wash hands before and after, always!
Scarring and reccuring stricture, again I think this is more about forcing the cath in. If you relax and don't put too much pressure on the insert, you should avoid the majority of these.