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
Greg123 jimjames
Posted
Hi JimJames and others,
Has anyone has something similar? Or do you have any thoughts?
Prior to the PAE I had a PSA of around 5 and a free PSA of around 27.
After the PAE my free PSA went way down and the PSA went up. The doctor who did the PAE told me to ignore those numbers for a few months.
One month after the PAE my free PSA was at 12% and my PSA went back to 5.2.
About 4 months post PAE, and about a month ago my test came back with my PSA rising to about 9, and my free PSA lowering significantly to about 9. I'm also having a small milky white discharge out of my penis, often when I get up in the morning, plus the doctor could see it when he examined me.
The PAE doctor was wondering if there's some asymptomatic prostatitis. I'm also wondering if there's infection or inflammation from self-cathing.
I went to a new urologist today who was suggesting cancer. She's taken a urine sample to see if there's infection. If there is we'll treat it and retest. Either way she's got me taking an MRI with contrast looking for cancer.
So what are your thoughts?
Thanks so much.
gipsy Greg123
Posted
jimjames Greg123
Posted
Hi Greg,
I've read that a number of things other than cancer can raise your PSA including prostatitis and self cathing. On a personal note, I self-cathed on a regular basis for over 2 years and had no change in PSA. I also suspect during this period that may have a mild case of prostatitis as well.
From the little I know about PSA and cancer, it's the changes that are sometimes of more diagnositic value than the actual number. In your case, there seem to be good reasons for the changes.
Depending on the results of the MRI, I'd probably get another opinion or two before doing anything else.
Jim
Jim
gipsy
Posted
Sorry damn self correcting... Meant Greg. 😁
Any Australians out there?
Howard31850 Greg123
Posted
Hi Greg - i don't mean to sound the alarm but there is a little dirty secret out there among IRs who do PAE that PAE can turn indolent tumors of the prostate, that otherwise would be no problem over your lifetime, into roaring aggressive tumors looking for blood supplyies that have been locally cutoff by the PAE procedure.
I had my PAE last August at UNC and though it was a great technical success I have not had any improvement in my BPH symptoms. So last October I insisted on a 3T-mpMRI with dynamic contrast to see why it failed. Well, instead I got a nice suprise that there was a lesion in the peripheral zone near the embolization sites that had a high probability of cancer!! So now I am waiting for my in-bore targeted biopsy to determine my next step. I do advise you to get your MRI asap and make sure it is a 3T-multiparametric MRI with dynamic contrast to show up any lesions. A TRUS-guided saturation biopsy at that is point is not useful until you have the MRI results.
Sorry to be so blunt but I am really scared and would not have had the PAE had I known about this risk.
Take care
Neil
Greg123 Howard31850
Posted
Howard31850 Greg123
Posted
I heard it from an interventional radiologist I trust. He told me it is talked about in IR circles but of course nothing is public or that would be the end of PAE. It makes sense though as a physiological process in a gland as vascular as the prostate. The rule of thumb is that our age indicates the probability that somewhere in our prostate there are benign tumor cells that will happily stay that way for a 100 years. So at 67 I have a 67% chance that if my prostate were removed (there are 2 uros that want to do that right now) and all the glandular tissue were examined then some cancer cells would be found.
These cells like all cells require blood supply. So if that supply is suddenly cut off by a local embolization then these cells will start the process of angiogenesis whereby they start growing blood vessels in search of the nearest arteries - and then we are in trouble.
But you won't find this in papers - it is just now coming to the attention of the IRs. It shows you that no medical procedure, no matter how non-invasive still has it risks. I used to think I would try another PAE next summer but forget it. Thanks to jimjames and others here I have learned to do CIC and that is it for me unless my biopsy has other ideas. I am really upset about this but want to warn you to get your 3T-mpMRI and pray it will be clear. The good thing is that these little tumors are fairly slow growing and can be targeted with FLA if necessary but even that procedure is now being shown to lack durability. Good lcuk to you. Neil
michael72708 Howard31850
Posted
Dr Baglas response to Neals suggestion that PAE causes non agressive cancers to become cancerous:
Completely wrong and not sure who would spread inaccurate info. It is unfounded, completely. You can post back that you spoke with me and this is ludicrous
Sandeep Bagla, MD
Vascular & Interventional Radiology
Vascular Institute of Virginia
Woodbridge, VA
MacMac7 jimjames
Posted
Hi JimJames and Others,
I am really glad I found this forum. As far as I know there is nothing else like it. I began CIC about six months ago due to a flaccid bladder—nothing too seriously wrong with me other than urine retention and the stage 3 kidney disease which came about because of the urine backing up. I can/could urinate but only after my bladder got really overfull. So I've adjusted okay to CIC four times a day and the kidney disease has stopped progressing for now. I could say much more about my condition if anyone is interested but for now I have a more specific question.
Has anyone gone through airport check points with catheters in your luggage? I use a pretty normal catherter, 16 inch Cure Catheter and I'll be taking about 24 if those as well as about 12 Coloplast Compact Male Catheters (these are really great for doing the job away from home). I hope no fuss is caused at TSA checks since I will have my kids with me and they, at this point, don't know that I need to self-cath. I could always check my luggage, but I'd like not to, and I'll need at least one or two of the Compact Caths available to me. The lubricant I think I can handle just by putting in a small plastic bottle.
Any advice for me as I travel by air?
Thanks very much,
Bill
zdzislaw MacMac7
Posted
Hi! I have just travelled with my Speedicaths with no problems at all. The only thing I should mention is that I am in Europe, but I believe this shouldn't be different in the US, as European airports are very securised right now, in particular Paris, where I took 2 different flights.
jimjames zdzislaw
Posted
Hi Mac,
I only traveled air once (domestic USA) with my catheters and had a doctor's note with me that explained the need not only for the catheters but for the the supplies (lube, etc.). I was also careful about the fluid requirements and packed everything per whatever regulations I could find online. To make a long story short, I never needed to show the note and no one questioned the box of 30 catheters in my carry on. That said, I'd probably do the same again because you never know, and you don't want to be without the catheters.
I traveled by myself on that trip, but I do appreciate your privacy isssue, and might run into that myself next time. For that, I might contact the airline in advance and see how they can help.
I don't think you need to carry all the catheters with you on the plane, but I would carry at least a few days worth in case you someone get separated from your checked in luggage. If you're going to be away for some time, probably a good idea to let your catheter distributor know in advance with a heads up that you may need catheters shipped to your trip destination.
Motoman MacMac7
Posted
Mac,
I have traveled often with catheters, in the USA! Europe, and South America. I have never had a problem with taking them in my carry on. I normally carry the Speedicath compacts in my carry on, and pack the longer ones in my suitcase, to keep enough separate in case something happens with the luggage.
After I pass through security, I will put one or two compact catheters in my pants so I don't have to do this on the plane in the air. If I was ever questioned, I would just say these are medical supplies.
frank74205 Motoman
Posted
Hi Motoman, I have doing CIC 4 months,so i'm still new at this. Your info on travel was very interesting. Do you find that with the Speedicath compacts have enough lube?Do you use the BZK wipes?How about hand washing before?Thanks for this info,hope your having a great time?
frank,
MacMac7 frank74205
Posted
I just wanted to thank Frank, Motoman, Zdz, and Jim for responding to my request for information on traveling with catheters. I'm doing that now in the US and have had no trouble, though I got a note from my doctor just in case. As I think I said, I have two kids who don't know I'm doing CIC (I'll tell them eventually), so it's a little touch and go at airport bathrooms and the hotel room too but it's working fine. Going through TSA no mention was made of the Speedicath Compacts I had in my bookbag, or the Cure catheters I had in my carryon suitcase. The lubricant I just put in a regulation plastic bottle and then in the ziplock bag along with my shampoo and deoderant. One thing I sure wish is that Medicare would pay for the Compact Speedicath. They are very convenient to use. I get the Cure catheters at no cost, but the compact ones Medicare will pay nothing for unless there is some medical reason why they, and they alone I guess, must be used. Anyway, thanks to all who responded. Mac
jimjames MacMac7
Posted
Mac,
Glad things went well at the airports.
As to the Compacts, it was explained to me that they cost too much to make for standard Medicare reimbursement. That's why they pack a bag with the compact, whether you need it or not. The bag let's them charge Medicare more since it's not a closed system catheter.Following is the specific criteria you need in order to qualify for a closed system catheter and therefore the Compact. In addition to lab results, everything should be recorded in the doctor's notes including specific symptons that meet the criteria. The good news is that Coloplast is supposed to be coming out another Compact this Spring that will be covered by Medicare and will also be available in a Coude tip. Not sure if this is their "Flex" design or something else. Probably not as elegant as the Compact tubes, but unlike the Speedicath's (my favorite) they will bend well so as to fit into your pocket.
So here's the criteria you need to get Medicare to pay for your Compacts:
Medicare UTI documentation requirements for A4353 (advanced products):
- Patient has had distinct, recurrent urinary tract infections, while on a program of sterile intermittent catheterization with A4351/A4352 and sterile lubricant twice within the 12 months prior to the initiation of sterile intermittent catheter kits.
o The UTIs must be considered two separate infections (indicated with a two-week separation in collection date)
- A patient is considered to have a urinary tract infection if they have a urine culture greater than 10,000 colony forming units of a urinary pathogen AND concurrent presence of one or more of the following:
o Fever (greater than 100.4 F)
o Systemic leukocytosis (often not documented in this verbiage but rather a complete blood count (CBC) otherwise known as hematology report)
o Change in urinary frequency, urgency, or incontinence
o Appearance of new or increase in autonomic dysreflexia in spinal cord injury patients
o Physical signs of prostatitis, epididymitis, orchitis
o Increased muscle spasms
o Pyuria (greater than 5 white blood cells per high-powered field)
- The concurrent symptom must dated within one week of the urine collection date
jimjames
Posted
correction: third sentence, second paragraph should read:
"The bag let's them charge Medicare more since it IS a closed system."