Anyone Self Cathing? I still am after over 10 years.
Posted , 25 users are following.
Haven't been here for awhile, but hopefully someone here still remembers me? if not, I used to post a lot about self cathing (CIC).
In a nutshell, over ten years ago my urologist said I would never be able to have a natural avoid again without a TURP. His exact words, "when pigs can fly".
So they must be flying, because many natural voids over the past ten years and in fact, for the past couple of months, all the voids were natural and my bladder empties completely.
I owe it all to CIC. My bladder ain't new -- nor am I -- but it's in significantly better shape than it was before I started self cathing.
Jim
5 likes, 151 replies
gerals81637 jimjames
Edited
Thanks ever so much for your reply jimjames. I understand you started using the 14 fr then changed to the 12 fr . My urologist has me presently on a 16 fr foley straight tip but has made the prescription for a 12 fr intermittent .. I can of course because i live in canada buy any size cath i want so i have some 12 fr intemittent and some 14 fr intermittent.
In quebec we have to pay for our own intermittent catheters so many of us have to wash the catheters due to money issues which i will have to do also after learning how to catheter.. In the first month i can afford to buy the disposable types but after that i will have to play russian roulette with washing a catheter over and over and hope i dont get a uti. Of course the big fear is that getting a urinary track infection can lead to getting sepsis and then its possible curtains!!! The nurse for my urologist says its perfectly safe to wash the catheters and almost no chance of getting a uti.. The nurse at the clsc who i talked to on the phone doesnt agree.
Thanks to this forum and people like jimjames who have helped people on this forum from what I can see is literally for years and years , but thanks to that i have a small measure of hope. Sorry if my grammar is not good or my way of explaining myself is not much , but the panic in me now over comes me as the 26 of sept is not far away and that is the big nitemare day for me.. I have since found out that if i go home after the doctor removes the catheter and say i am unable to self cath and where upon become in acute urinary retention i will have to go to the hospital and wait likely for 5 or 6 hours if i am lucky to get another foley put in. I know a nurse who works at the hospital i would go to and she told me i might even have to wait 12 hours since they are so understaffed The clsc public nurse clinic maybe about 4 hours but they close at 8 in the evening And i remember the agony of being in the ambulance with full acute urinary retention 4 months ago when this whole thing began and that time i had to wait about an hour with over a litre being retained. Even if no one responds to my post here i guess just being able to post this helps me in some way and i am grateful for this..
jimjames gerals81637
Edited
The general principle is to use the smallest catheter (lowest FR number) that you can insert easily.
In my case, I initially had problems inserting the FR12 because it was too flexible and kept bending back on itself when trying to go around the prostate. Switching to FR14 solved that problem. Later, with practice, I was able to use the FR12 without bending.
Hard to say in your case if the FR12 will work or not, but if it starts to bend too much, you want to go up to FR14, or even higher if necessary. So if they're suggesting FR12, might not be a bad idea to have some FR14's on hand as a back up.
They should also have you self cath right at the office before you leave. If you can do it at the office, should not be a problem at home.
Like I mentioned, many people have no issues at all learning CIC, but some, like myself do. For example, I had bleeding, urgency, the feeling I needed to urinate when nothing came out and general discomfort. This lasted a couple of weeks. I also developed a UTI which had to be treated with antibiotics.
I mention this not to scare you, but so that if you fall into my group, understand that this is a perfectly normal reaction of your body adjusting to the catheter and with time all these symptons will go away.
But since your body is already used to a Foley, something tells me that you will have an easier time than I had.
As far as reusing catheters, should not be a problem with infections as long as you follow the cleaning protocols. For convenience, you might want to have several days worth of catheters cleaned in advance, so you don't have to do it after every cath, or even every day.
Good luck and focus on the benefits of CIC. For me, and many others, it's been a lifesaver.
Jim
TKM gerals81637
Posted
When I first started intermittent catheterization in 2018 the Urologist started me using the red rubber/latex re-useable catheters. They were very soft and flexable so good to start with. I used them for about a year with one UTI. You have to keep your hands very clean, you might want to wash your hands with alcohol just before handling the catheter. It seems like when I have had a UTI it have been be caused by breaking the skin in the urethra. You might also want to wipe the catheter with alcohol just before using. I made a holder for the catheters while drying. It is a piece of wood with eye hooks in it to hold the cathers by the funnel. I set it across the top of the shower with catheters hanging down. I have re-used catheters for up to a month by washing them and wiping with alcohol.
Jezzaman gerals81637
Posted
Hi
So in my case I only use a disposable catheter when I cannot pee at all, ie acute UR.
Normally I can void albeit involving many trips to the loo!
So you should be able to do the same and avoid a trip to casualty?
Have you tried?
donald16398 jimjames
Posted
How much did your prostate grow in the last
jimjames
Posted
Don't know. Haven't had a physical exam of prostate or any imaging for several years.
Jezzaman jimjames
Posted
Hi Jim
Yes I remember you very well actually!
You inspired me to persevere with CIC whilst I waited for a procedure for my BPH that I would judge to be worth the potential risks!
I learned how to do it eventually after failing initially and it has saved my bacon many times in the last 8 years. I am now however going to go for Aquablation as I still go into acute retention quite often when out enjoying a few beers. So I will report how it goes.
I presume you are not going for any intervention for your prostate?
jimjames Jezzaman
Posted
Since I'm doing pretty well with CIC, not that interested in any of the current procedures. Should CIC stop meeting my needs and/or the procedures get better, I might consider them.
Jim
rdemyan jimjames
Posted
Hello Jim:
I remember your discussion on CIC. I don't and haven't had to. However, I've always wondered why one would want to do this, because doesn't the prostate just keep growing and making the situation worse?
jimjames rdemyan
Posted
Has my prostate grown in the last ten years since I started CIC? Honestly, don't know because I haven't done imaging for over 8 years 😃 But whether it's grown or not, it hasn't effected my CIC in any negative manner and in fact I cath less now than I did ten years ago. The other thing is that the severity of LUTS isn't necessarily due to prostate size. Some are very symptomatic with smaller prostates and some hardly syptomatic with larger prostates. So it's not just size per say, there are other factors at play such as the shape.
Jim
jimjames
Edited
As an update...
After a period of time where I had to cath up to nine times a day, I just cancelled this month's order of catheters because I currently don't need them!
For the past week or so, all natural voids (200-300ml) with acceptable PVR's (under 100) when I did test.
So what's the story? I really wish I know, but this has been consistent with the wax and waning of my catheter use over the past seven years. In the beginning, it was a necessity because I was at the point of almost complete retention. Then things got progressively better as my bladder began to rehab itself from CIC. Then it got to the point of not needed CIC at all. Then periods when I needed to.
In my case there may be a number of factors at play, including UTI's and even asymptomatic bacturia. Or perhaps, the few months where I had to cath all the time, just gave my bladder a rest and allowed it to recover. I talked about this in previous posts where I find the best way for me to get my bladder over a hump is to cath more frequently and in essence giving it a holiday.
I did switch wipes from BZK only to Dynarex Obstetrical Towlettes, which also have BZK, but some alcohol, so they are bit more moist. So maybe some of that and/or that my last round of antibiotics (several months ago) knocked out any irritating bacteria. Or perhaps some of the pelvic floor exercises I have been doing. Or maybe, again, just the wax and wane of a bladder that is by no means new, but needs rejuvenation from time to time (excess cathing) to keep it working well.
So for anyone who has found their CIC progress stall, don't give up hope. Just keep at it, perhaps even increase the frequency, and maybe you can cancel some of your cath orders as well!
Jim
Lensworld jimjames
Posted
Have you ever undergone Urodynamic studies test to check your bladder function?
jimjames Lensworld
Edited
When I arrived at my urologist's nine or so years ago in almost complete retention, he suggested TURP. Part of his center's TURP protocol was urodynamic testing prior, to ensure that the TURP had a chance of succeeding. A very important step often overlooked, as you probably know since you brought it up.
In my case, he wanted me to self cath for six weeks prior to urodynamics, to give my system a rest for a more accurate result. He also said that if I wanted to skip the TURP and continue with CIC, that would be fine also. So that's how I was introduced to CIC.
Had the urodynamics. I passed enough to the extent that TURP would be a viable option, but declined because of the almost guarantee of retro ejaculation. Been doing CIC every since, but as mentioned, my bladder has been rehabbed from CIC to the point where I can naturally void much of the time. I think this past week I only did CIC 2-3 times, with natural voids between 200-300ml and estimated PVR's under 100ml.
Jim
Lensworld jimjames
Posted
I have a few questions. Since you are an expert, you are the best person to ask it. I'm 30 years of age. My bladder is underactive, diagnosed after a Urodynamics test, but it still works enough to make the PVR lower than 100ml. However, over time, this PVR is increasing. Here are the questions:
If I CIC, say once a day or once every two days, is there any chance my bladder will get better?
Is your bladder hypotonic? If yes, how are you treating it?
What's the most number of times you had CISC a day?
How many UTI's have you had in 10 years and how bad were they? Did you require hospital admission for that?
Thank you.
Lensworld
Posted
My urologist doesn't care about my health. Hence these questions to an experienced person.
jimjames Lensworld
Edited
On one hand, you don't want to wait too long to start CIC. But on the other, not sure you would see significant benefits with a PVR of only 100ml. Not sure what the magic number is, but certainly not the 700 ml plus PVR's I had before I started. A good rule of thumb is that you don't want to be holding more than 400ml of urine in your bladder at any one particular time to keep your bladder from stretching. So if your natural void is 200ml and your PVR is 100, then CIC may not benefit you. On the other hand, if your natural void is 400 with a PVR of 100, then it should.
My bladder lost it's elasticity many years ago from holding too much urine. Be it from waiting too long and/or PVR's. I treat it with CIC which lowers bladder volumes, giving it a chance to rest and heal some. Will never be like new, but I've seen significant improvement. YMMV.
I cath between zero and six times a day. Lately, between 2 and zero. I have cathed more than six times a day when I wanted to give my bladder a "vacation" and limit the total volume to 200ml versus 400ml. That was usually just for short periods. I think my record was 12-14 when I had a UTI with urgency.
In the five years before CIC, probably averaged 2-3 symptomatic UTI's per year. Same after CIC. That said, there are a number here who have reported zero UTI's from CIC. And while it may sound counter intuitive, a higher CIC frequency can result in fewer UTI's, because the urine will not sit around as long for bacteria to incubate. So if your CIC and come down with a UTI, the solution is to increase fluids, cath more often and take an antibiotic if warranted, which they are sometimes not if you CIC. Another topic. Most probably my higher incidence of UTI's has to do with the fact that I have a Diverticulum that can hold up to 400ml of urine. Because a diverticulum has no detrussor muscles, it often never completly empties, even with CIC. So most probably that's where most of my UTI's come from. Never hospitilized for UTI. All treated at home based on the lab culture. And most starting resolving within a few days of starting antibiotics, although as mentioned I don't always take them, depending on how symptomatic I am. The other thing is that many of us that CIC will have chronic asymptomatic bacturia. That means the urine culture will come back positive, but you may be asymptomatic, or the symptons may not be bad enough to warrant antibiotics. Too many antibiotics can sometimes build up more resistant strains.
Jim
Lensworld jimjames
Edited
Thank you so much for this detailed reply.
My current problem is nocturia. Having to wake up like 3-4 times a night to urinate. I don't remember the last time I had a good night sleep.
Also, I hope my kidneys aren't damaged. I get weird ache in my flanks every day.
Do you have any blockage that contributed to your condition? Also, when you urinate naturally, does it take you time to start it?
What catheter brand do you suggest? I reside in India. Hydrophilic catheters aren't available here. Only latex and non-hydrophilic PVC catheters. I can get a hold of Coloplast Speedicath catheters (which, apparently, most people are comfortable with) but due to shipping and custom charges, they will end up costing me like 2 times their actual cost. I can afford it still since my current job pays pretty well. But, I don't know if they will comply well with my body.
For UTI, I think most people either drink cranberry juice/take D-Mannose supplements to prevent it. Also, I will start with CISC once a week and see how my bladder responds to it. If PVR keeps increasing, I will increase it to twice a week and so on. Do you think this is the appropriate approach to treating my condition?
Thank you so much for taking the time to read my comment. Hope you have a lovely Christmas and a happy new year.
Rz87 jimjames
Posted
Hi Jim,
do you mind me asking how well tou urinate regarding the stream?
For background i self date a stricture daily with a 16 fr coude and im curious if i could be causing strictures in other locations.
when you stop cic for awhile do you have a good stream (indicating a wide healthy urethra) do you know if cic ever caused strictures for you?
jimjames Rz87
Edited
Not the stream of my youth, but sometimes it's quite strong, sometimes dribbles and most of the time in-between. When it dribbles, it usually means not emptying properly so I will usually self cath at that point.
Never had a stricture that I was aware of. Use Speedicath Coude 12FR.
Jim