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
amiller jimjames
Posted
Hi Jim,
I just switched from 6 years of using Magic 3 caths to Cure Catheter Hydrophillic Coated HM14. Night and day difference. No resistance what so ever. Empties bladder twice as fast due to polished holes. When you pop the liquid container, it directs the fluid into a tight housing to throughly coat the cath. You don't have to spread it around. The glue used is much more secure than the Magic 3. I highly recomend. No UTI since I switched.
jimjames amiller
Posted
Hi Amiller,
Glad it worked out for you. Let's put in on the list of recommended catheters. The Speedicath Hydrophillic coude works best for me but that's just me (and a few others as well). I tried around a dozen catheters in the beginning, including the Magic 3. Not sure if I tried the Cure Cath -- next time I speak to the distributor I will ask if they ever sent me samples of it to try.
Jim
amiller
Posted
I have used the HM14 over month now. Much better life with them, as well as I'm on my first day of retirement after 34 years sitting to much in a studio ruining my bladder. lol
jimjames amiller
Posted
Amiller,
Glad it's working out. Not telling you to switch or anything, but Coloplast just came out with a new flexible catheter, similar to the IQ cath where the "coude" tip is actually more of a small bulb so orientation isn't necessary. It's also a hydrophillic. Then there's always the tried and true Speedicath Hydrophillic. In case you get bored and want to try something different
Jim
frank74205 amiller
Posted
Hi amiller, I use the magic 3 sure grip ,and I'm thinking of making a change . Did you change to the Cure Catheter Closed system?
the last box of the magic 3, were not lubricated ,not enough.I didn't use them.
Thanks for this info.
frank
jimjames frank74205
Posted
Hi Frank,
You might give these new catheters a try...
https://patient.info/forums/discuss/coloplast-speedicath-flex-coude-review-583840?page=0&utm_source=forum&utm_campaign=comment-notification&utm_medium=email#2631808
Jim
amiller frank74205
Posted
Frank,
Every batch I received of Magic 3s were different. In size, amount of liquid lub, glue to stick on a object. Same issue you had.
Cure Catheter Hydrophillic Coated HM14 are so comfortable. I got caught not packing them one day in my backpack, I had to pull out a backup Magic 3, I thought I was not going to get it inserted. It was very rough and painful going in. A 1/3 of the work and almost twice the draining speed. The grip is ALWAYS at the top. It can't slip down. You don't have to spread the liquid up and down the tube, when you pop the large container, it covers everything. If you do slide your hand to spread the liquid you can get a paper cut real easy like I did.
frank74205 amiller
Posted
thanks
frank,
jimjames frank74205
Posted
Hi Frank,
As long as you're trying new catheters, you should try the new Coloplast Speedicath Flex Coude.
Jim
greg73359 jimjames
Posted
Like you, my enlarged prostate had caused serious urinary retention up to 2 liters and was given indwelling catheters for 3 months while waiting for green light laser.
During this time I had a Prostate Artery embolisation which has reduced my prostate from 60 to 45 .
I have failed all my trial of voids but there is improvement so I opted out of the green light and began CIC as I wanted my life back.But this was against my Urologists wishes so I was left on my own.
I later found this site and it has been such a great help and for the last three months have been using your method of keeping below 400ml.
I am now on a time schedule of five caths a day.
3.30am,7am,12noon,5.30pm,11pm.
Not sure if this is typical but I urinate much more at night and find I need a shorter time between caths overnight but this way I am only up once during the night.
I have no trouble voiding a small amount naturally before cathing but it still leaves a large residual -typically it might be 75ml naturally and a residual of 300ml.
What happens sometimes at night my schedule lets me down and I may end up with a total above 400ml even up to 500ml like last night when I had quite a bit of watermelon at dinner.
My question is when you blow the 400ml now and again have you stretched your bladder and gone backwards or does the bladder quickly recover from these events.
Did this happen to you at times?
Did you see a gradual improvement over the two years or was it a more rapid improvement at the beginning. I seem to be plateauing a bit?
Thanks
GREG
jimjames greg73359
Posted
Hi Greg,
Everything you say sounds normal. As we get older more urine output at night (nocturnia) can become the norm. Getting up once a night is not too bad. And, yes, I went over 400ml many times, as the kidneys don't keep as good a schedule as I did! So, the point is to try and keep it under 400ml, make adjustments when necessary, but if it goes a little over from time to time, or even once a day, no big deal. That said, I used to throw in xtra caths now and then to keep the volumes even lower than 400ml. In your case, you might consider adding in a sixth cath either daily or from time to time, depending on your schedule.
I had periods of progress, plateus, set backs and more progress. It's not linear. How long have you been self cathing now? Are you finding it easy, difficult? What cath are you using and did you see the thread on the new Speedicath Flex Coude?
Jim
amiller greg73359
Posted
Greg &James
I just retired today and hope for more frequent cathing. But for the last 6 years I was holding to long due to being in a studio setting with clients wanting their videos edited asap. Then I would be out in the field with crews shooting and I would be stuck near no bathrooms until we would go eat. So I void 200 at most and Cath 350 to 400 on average. But I try not to drink anything after 8:30pm. I take my pills with a cup of water right before I crash. I make it to 5:30 am when it's time to get ready for work. It's going to be hard to change now that I am retired.
greg73359 jimjames
Posted
Out of interest Im in Brisbane Australia.
I started self cathing nearly 4 months ago but I had no help from anybody so experimented with the number per day everything from once only before bed up to 4 times relying on my natural voiding say 150 but leaving a residual of say 400ml each time.
I read your info about a month ago and have been following the 400ml max closely except for the odd time where it could go to 450ml or rarely 500 like last night. It is hard to schedule for it when you dont see it coming.Have to watch out for diuretic foods at night (coffee, watermelon etc)
At the start I was totally in the dark as the hospital would not consider my doing self cathing and said I should sign out of their care.
To start I ordered a trial pack of different size and stiffness standard nelation caths and settled on unlubricated size 12 stiff Hollister type 1048.They cost 50 cents.
I clean them and my hands using antibacterial hand wash and hang them to dry on a straight sewing pin(not plastic head). I have used them for 3 weeks or so and they still looked perfect but I change them anyway.
It started out a little uncomfortable but using lube jelly and pulling penis up and out its much better. It is a funny feeling going thru prostate but no pain now.
So it is a bit of a hassle keeping everything clean but takes 5 or 6 mins and is easy.
I did see the speedycath info- but I am going fine with the far cheaper alternative.
I think the speedycath would be great when travelling away from home.
My technique has difficulties then.
Thanks
GREG
greg73359 amiller
Posted
Congrats on your retirement it will give you more freedom to follow Jim's 400ml max.
What was your total volume (natural void plus cath)at 5.30am?
Mine would be way over 600ml so I put in my 3.30am cath and as Jim said that's not too bad.
I wonder if anyone in our situation either keeps an intermittent cath in during the night with a bag or uses a indwelling cath and bag only at night. That would give you a full night's sleep-maybe Jim could comment.
GREG
frank74205 jimjames
Posted
thanks
frank,
jimjames greg73359
Posted
Hi Greg,
Personally, never had an indwelling (Foley), but have read of some people using a Foley at night and CIC during the day, for the full night sleep that you mention. If the idea appeals to you, I see no reason not to do it, other than the possiblity of more UTI's, but I suppose you could just stop if that become a problem. You would have to learn how to insert and take out the Foley but probably not that difficult. Of course you should run this by your doc. As to leaving an intermittent catheter in all night, I would be hesitant to try it unless I heard back from professionals or patients who have done this successfully.
Jim
jimjames frank74205
Posted
If you cath 1 or 2 hours after CIC, how much usually comes out of the catheter?
Jim
jimjames amiller
Posted
Amiller,
Yes, congrads on your retirement! Plenty of time to cath now
But seriously, things should be a lot easier and you hopefully can adjust your new schedule so that you can keep ttal volumes under 400ml. "Holding it in" like you describe is one way many of us got into this predicament in the first place, and certainly not a way to make things better! How many times a day were you cathing?
Jim
Jim
amiller jimjames
Posted
4 CICs a day when working Jim. I am moving to 5 now that I am home more. in the am i void around 200 and cath around 400 and that is avaerage in the past. Not going to wait for my eyes to turn yellow anymore. Have a cruise coming up and the side excursions should be ineretsing being on the move. Hope I don't have snior momensts and forget to load pockets up.
amiller greg73359
Posted
jimjames amiller
Posted
Amiller,
I know you're happy with the cure caths, but you might want to sample the new Coloplast Speedicath Flex Coude. (Link to review below).
It takes a little longer to cath than for example the regular Speedicath, however it comes in a handy pocket size container for travel. Also, because of it's unique design, it's the closet thing you can come to a closed system, meaning once the tip is inserted, it's fully protected from contamination either from yourself or from the surrounding air. That last part has always been a concern of mine in public bathrooms although I most always cath at home.
Link here: https://patient.info/forums/discuss/coloplast-speedicath-flex-coude-review-583840
Jim
frank74205 jimjames
Posted
frank
jimjames frank74205
Posted
Jim
greg73359 jimjames
Posted
Out of interest for everyone.
I received an info sheet from my hospital re TURP
They say it is the Gold Standard still as it lasts up to 15 years and Greenlight around 7years.
BUT look at these stats on the sheet:
Bleeding up to 6 weeks-1 in 100 men
infection -1 in 20
mild to moderate erectile disfunction-1 in 10 they say advice and meds can help.
poor bladder control improves in a few weeks but can rarely be permanent no numbers given
DEATH due to turp Wait for it: 1 in 200
Intermittant cathing is looking a bit more attractive Aye!
GREG
glenn77 greg73359
Posted
glenn77
Posted
My new doctor says he believes that there is a lot of underreporting of incontinence. (His speciality is implanting artificial sphincters for men who end up incontinent, so he probably knows what he's talking about.)
kenneth1955 glenn77
Posted
kenneth1955 greg73359
Posted
What gets me is when a urologist will tell you let's fix the problem and if something else cimes up we will fix that and so on and so on Ken
greg73359 kenneth1955
Posted
GREG
greg73359 kenneth1955
Posted
Blood transfusion needed for 1 in 55
Very rarely daage to the rectum with possibility of temporary or permanent stoma bag to divert the faeces.
And of course everybody gets retrograde ejaculation which I have anyway after one month on Duodart.
One thing is this hospital is honest about possible outcomes.
GREG
frank74205 jimjames
Posted
frank
frank74205 jimjames
Posted
JIm, I was told if i get a 100 degree temp. I should call the Uro office come in and bring a urine sample. If i get a UTI this could spread very quickly,i assume?What would you do ?I don't live to close to my uro office. I have some Cipro at home ,the office also said to take cipro if i get this fever 100 degree,then after they get urine results ,if cipro is not the right medicine they would stop cipro and start the right antibiotic.
thanks for your answer to this JIm,
frank,
jimjames frank74205
Posted
Jim
frank74205 jimjames
Posted
frank,
jimjames frank74205
Posted
I want to make sure I understand this correctly.
First, you cathed with the speedy cath flex? And an hour later you cathed with the Magic 3 sure grip?
Is the 300ml the void volume from the second cath, the Magic Magic?
What was the void volume the first time you cathed with the Speedy Cath Flex?
Jim
111Alex111 jimjames
Posted
After 5 years of self cathing, i did HOLEP 70 days ago,.and i highly recommend this procedure. It was a great success for me in every way, except for the retro ejaculation. My prostate was giant 270cc. I still recomend cathing, to anyone who wants to wait. If anyone needs any information, let me know.
frank74205 111Alex111
Posted
Hi Alex, Thanks for this info.Holep was good for you.Alex did you have complete urine retention? No natural void? At 88 years old i don't know if surgery would be a good idea?
i also do CIC,however it sure would be nice to have a natural void, at least once in a while. God bless you for this info.In inches how many are in 270cc?
thanks
frank,
kenneth1955 frank74205
Posted
Good evening Frank. I know you are still looking for a solution for your problem but you know that your doctors only gave you a 50 50 chance of anything working for you. And even told you that you still would have to continue CIC. Please don't be pushed into anything. I don't want anything to happen to you. The odds are not good Ken