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
patrick45945 jimjames
Posted
Hi Jim and all,
Newbie to this thread but have been active on the afib group on this website for awhile now. Since this thread is 4 years old, just wanted to make sure it was still active before posting.
In a nutshell, I recently had a spill off my bicycle and ended up in the ER. CT scans discovered a "massively distended bladder" as well as an aortic aneurysm, neither of which were caused by the fall from my bike. I have followed up with a thoracic surgeon for the aortic aneurysm and a urologist for the distended bladder. I raised some eyebrows in the ER when they drained 5300 mls of bloody urine from my bladder and they were amazed I was not in excruciating pain. I was not.
A Foley catheter was put in (which I still wear 4+ weeks later), and this past Thursday I completed urodynamic testing during which I was unable to void, so I left with another Foley and a followup visit with the urologist in 2 weeks. The LPN performing the urodynamic testing advised IF the urologist recommends CIC, to go that route.
Which brings me to this thread. I have read with great interest some of the comments on your OP and have questions about self-cathing. Of course I am a bit apprehensive of this process but am comforted by your posts. Although I am not certain that CIC will be recommended, reading between the lines of the nurse's comments, it seems quite likely.
Since I am not sure this thread is still active, I will limit my questions to just a couple of my main concerns.
As stated earlier, I am active on the ATRIAL FIBRILLATION group of this website as I was diagnosed with paroxysmal afib in January 2018. I currently take Pradaxa, a blood thinner, and Dofetilide, an anti-arrhythmic, to manage my afib. Several of the comments on this thread mentioned bleeding while self-cathing and I am concerned about excessive bleeding being on a blood thinner and would be interested in any feedback from those doing CIC while taking a blood thinner.
Also, what are the options or alternatives to CIC? While my prostate is "mildly enlarged", my main problem seems to be my distended bladder and not my prostate. Are there surgical options that would help me avoid long-term CIC?
No doubt I will have more questions and concerns going forward, but wanted to take this opportunity to introduce myself and ensure this thread is still active. I am a happily-retired 70 year old living in Florida and ride my bike 25-30 miles a day and am in otherwise good health.
Improved health to all and thanks for reading and any responses.
Patrick
stebrunner patrick45945
Posted
Hi, Patrick,
Your story is similar to mine in several ways, though I don't have experience with Afib or blood thinners. About 3 1/2 years ago, I was hospitalized with acute urinary retention. And like you I was still peeing normally, except for a slightly slower stream. I was not in pain. In the hospital, they drained 7,000 mls out! I almost lost my kidneys. The urologists told me that I'd never be able to void again on my own. I had a Foley catheter in for 3 months because I was fearing the pain of CIC. When they put the Foley in at the hospital, the pain was the worst I had ever experienced.
Urologists are basically surgeons, and the ones whom I've dealt with have all proposed surgery. However, my problem is twofold. My prostate is enlarged, partially blocking the pipe, and my bladder is weak, creating a pump problem. The urologists are eager to fix the pipe, but when I've asked them how to rehab the pump, they have no answer. I've seen 7 urologists over the years, and none have been supportive of CIC, nor have they been all that knowledgeable about it. My current uro is baffled that I haven't had a UTI in over a year and a half.
I'm currently using Jimjames's plan for rehabbing my bladder. I was making progress until I had bladder stones removed about 2 years ago. Then my progress slipped back. I'm slowly regaining what I lost. You can read more about Jim's plan in the thread.
Like you, my retention came on slowly, hence no pain. I believe the problem started because I was taking over-the-counter antihistamines, which can cause difficulty in urination. I sometimes have blood in my urine after strenuous exercise, but I believe that's caused by a kidney stone. The first 5 urologists did not see the kidney stone in my original CT scan. I also had bladder stones from the urine retention, and those did show in a cystoscopy. A follow-up CT scan revealed the kidney stone. Since you've had extreme retention, you may want to make sure you don't have any stones.
Thanks to Jimjames and others on this forum--and a great physicians assistant--I finally learned how to CIC about 3 years ago. Currently, I do CIC 5 times a day. I'm also able to void on my own, though not enough to completely empty my bladder. CIC allowed me time to research my treatment options, and to determine what my priorities are. For example, maintaining my sexual function is high on my list. I did have a prostate artery embolization (PAE) done about 2 1/2 years ago, and it was partially successful.
Best of luck to you as you research your options.
Stebrunner
patrick45945 stebrunner
Posted
Hey Stebrunner,
Thanks for your response. Yes, our urological paths are quite similar. I do remember the few times I took OTC antihistamines how it affected my bladder...made me feel like I had to pee... but couldn't!
And thanks for the heads-up on the kidney stones...now that you mention it I think I saw a note in the FINAL REPORT of my ER CT SCAN of kidney stones...will have another look and mention this at my next uro appt.
So your plan is to use CIC indefinitely in hopes your bladder will be rehabbed? Got to admit the idea of CIC is a bit scary for me but I haven't found any options yet. You say many uros aren't supportive of CIC...so what is their solution? I must say at this early point in my uro travels I might prefer a surgical option if it would eliminate the need for a lifetime of CIC.
Thoughts?
Although a newbie here, I SO appreciate the support of this group, much like my afib groups!
Cheers and improved health to all!
Patrick
alex23431 stebrunner
Posted
Hi Stebrunner
Could you please tell me what you meant under "lost my kidneys"?
What was your GFR?
My story is a little bit different.
I was able to urinate with no pain but had a slow stream, and at nighttime it was very slow.
My prostate was enlarged.
My urologist kept telling me that my kidneys and my bladder will get hurt,
but i did nothing. Then in June of this year I wasn't feeling good, and I had blood rest done.
My kidney function( GFR) was 29. And then I agreed on Folley.
jimjames patrick45945
Posted
Patrick: You say many uros aren't supportive of CIC...so what is their solution? I must say at this early point in my uro travels I might prefer a surgical option if it would eliminate the need for a lifetime of CIC.
To paraphase: When you train your whole life to use a hammer, everything looks like a nail.
In other words, surgery and procedures are what uro's are taught, what puts their kids through college. It's what they do.
That said, some uros do use CIC as part of their toolbox, but IMO not as much as they should.
As to the thought of "a lifetime of CIC", I totally get what you feel. When I thought I was facing the same, I got depressed, thought my life was over as I knew it. I just couldn't get my head around having to self cath or the rest of my life over a natural function up to that point.
What I can say is what a difference a few months made. Now, five years later, CIC is routine like brushing my teeth. I do have some health issues such as afib right now, but I don't even consider my prostate a health issue anymore. It's become a non issue.
My experience may be different from yours, but what I suggest is not look at CIC as a life sentence . Just take it one step, one month at a time. The great thing about CIC is that you can stop anytime and then have your surgery if you like and should be no worse for the wear. Conversely, once you have a surgery, you are stuck with the results, be good, bad or mixed. ]
Jim
patrick45945 jimjames
Posted
Jim,
I appreciate your wise counsel from years of experience. CIC apparently has worked well for you and your positive feedback provides encouragement going forward should that be my future treatment.
I am especially curious how our common condition of afib has affected your choice of CIC as a solution to urinary retention. Looking back, I'm wondering if my distended bladder may have any relation to the onset of afib.
Your thoughts?
Patrick
tim68354 jimjames
Posted
Thanks for keeping this forum going guys, its invaluable.
i have now been SC'ing for 3 years. Im now 50. Uro diagnosed retention and distended bladder during tests following ongoing UTI's. 1.5 lites removed.
The uro was hopeful my bladder would recover due to my age, however things havent really changed greatly. i still cath 3-4 times a day and generally cath around 500ml after natural void of 100ml or so. Just dont seem to be able to get into that final 500ml. I remain hopeful but have got my head around the fact I may be SC'ing for the rest of my life.
i did suffer with what i thought was UTI's during the first year of SC'ing however i now think that could have been prostatatis - both conditions seem very similar and almost indistinguishable. i now clean the tip of my old chap with a diluted mix of hibiscrub (chlorohex) and water. i squirt a tiny amount inside the tip too. This has helped enormously.
One question all. My prostate hasnt been happy lately, i can feel a tingly sensation on occasions, can feel like i need a poo when i dont etc. When i insert the cath it can be a little tender slipping through the last bit (assume prostate?) .. i have just reduced the cath size from 10 to 8, speedicath. i wonder if anyone else has found reducing the size of the cath has helped ? .. it takes longer to drain however i can live with that.
Any thoughts would be appreciated gents.
Tim - UK
stebrunner patrick45945
Posted
Hi, Patrick,
My plan is to use CIC until a procedure comes along that I feel confident will help my condition--and I'm ok if I have to CIC for the rest of my life. The uros, whom I've dealt with, have each recommended the surgery they specialize in--from TURP to HoLEP, etc. When I pressed them on the odds of their surgery working for me, they would admit the odds of the surgery working were slim. It's very possible that I would still have to CIC after the surgery--and possible that the surgery could result in unwanted side effects.
BTW, I don't like using medications, so using drugs to cope with BPH was never an option I considered. It seemed to me that the drugs are a temporary fix and that eventually surgery will be needed. With CIC I don't have to deal with side effects from the drugs.
In the beginning, the thought of doing CIC for the rest of my life depressed me. I sought counseling for the loss of quality of life I perceived I'd face. I struggled to learn CIC, but once I got the knack of it, I found that my quality of life hadn't changed.
Keep up your research. You're asking good questions.
Stebrunner
stebrunner alex23431
Posted
Hi, Alex,
I don't know what my GFR was, so I'm going by what the urologists told me. When I went in to have my bladder drained, they kept me in hospital for 3 days. They said they drained out 7,000 mls but put 2,000 mls of fluid back in because they were afraid my bladder would collapse on itself and cause further problems. Then they gradually drained out the 2,000 mls. The urologist told me I almost lost my kidneys, and that they were keeping me in to see if my kidneys would be ok. A surgical nurse told me that I was fortunate that my bladder did not rupture. I feel very lucky!
Stebrunner
jimjames tim68354
Posted
Hi Tim,
Get to your question in a minute but sounds like you're carrying 600ml of urine (500 cath after 100 nat void) at times. My suggestion is to increase your cath schedule so you're holding no more than 400ml at any one time. This will help decompress and keep your bladder from the stretched position and hopefully some rehab will take place.
As far as your unhappy prostate, you might experiment with different sizes (down or up) with the Speedicath. You could also try other catheters. I found the stiffer speedicaths caused less friction and trauma but some here have had better luck with softer catheters. We are all different. Some also have had luck using an external lubricant on top of the hydrophllic coating. Always go slow and gently and then even more gently. No rush in fact rushing the natural urination process, as we as holding it in is part of the reason many of us got into trouble.
Jim
patrick45945 stebrunner
Posted
My plan is to use CIC until a procedure comes along that I feel confident will help my condition
Hey Stebrunner,
Any idea what that procedure might be and when it may be available? It IS a bit depressing thinking about self-cathing for the rest of my life. Am curious about how counseling helped you get through this if you can share.
Thanks again for your continued response!
Best regards,
Patrick
stebrunner patrick45945
Posted
Hey, Patrick,
A new procedure that looks promising for me is FLA (focus laser ablation), which is done by interventional radiologists, not urologists. Because I have a large prostate and a large median lobe, my treatment options are limited. I'm waiting for further studies to be done on this procedure. Currently it is not covered by my insurance.
My first experience with a Foley catheter was so incredibly painful that I thought I could not handle CIC 4 to 6 times a day. Didn't realize until later that the urologist who inserted the Foley wasn't very experienced--hence the pain. My current uro's staff is able to install and remove a Foley without pain. As I said before, my current uro isn't supportive of my doing CIC, but I stay with him because I like his staff and because they are well-trained.
My primary care doctor recommended a counselor to me. Fear of the unknown was my biggest stumbling block to starting CIC, and he helped me work through that. Also, I have several family members who work in medicine, and I found my counselor to be an unbiased sounding board. The treatment plan I opted for went against what my urologists and family members recommended. I listened to what my urologists and family said--but I also researched on this forum and on other sites. The bottom line is that I'm responsible for decisions regarding my health.
Stebrunner
alex23431 stebrunner
Posted
A friend talked to doctor K. and the doctor refused to do FLA because of the problems with the bladder. You could email him your images and he will tell you if he could help you. He doesn't charge anything for the consultation.
patrick45945 stebrunner
Posted
Hey Stebrunner,
Thanks for your response and additional information. Totally agree that each of us is responsible to be our own health advocate, which is why I am here looking for all the info I can find about other's experiences with this condition.
I appreciate your continued feedback! Ever onward!
Patrick
stebrunner alex23431
Posted
Hi, Alex,
I've heard good things about Dr. K on this site, and if I go the FLA route, he's the one I'd have do it. There haven't been a lot of trials on FLA that I'm aware of, and I want to see a better track record before I pay out of pocket. It's great that he doesn't charge for a consultation.
Stebrunner
alex23431 stebrunner
Posted
Hi Stebrunner,
Yes, he is probably a nice person and a good doctor.
My friend emailed his MRi images to Dr. K.
A few days later doctor called and told my friend that
FLA will not work for him because of his bladder.
He responded all questions and charged nothing.
It is at least second patient that I know who Dr. K refused to because
of the problems with their bladder.