Self catheterisation
Posted , 9 users are following.
Having discussed on other threads the problems of nocturnal leakage and BHP, have so far rejected some surgical interventions as not sure the outcome will be acceptable. Urologists I have seen appear to act in a commercial manner and always leave doubt their surgery is not going to solve the problem. TURP, Holep,have been suggested. However I pass water OK, even inadvertently during sleep, which tells me there is NO restriction in my ureter. Therefore re-boring my pipework seems unnecessary and, to me, the problem is more to do with valve ( splinter) control. This may be due to pressure within the bladder, GP and Urologists state my bladder is enlarged and ultra sound test show water retention. The concern is effect on kidney function, I have regular checks on kidney function, am due a blood test tomorrow.
My PSA is 3 and urologists state Postate is 30-35mm, and not over large.
Have discussed the overall situation with my GP who has offered some medication ( I am not keen as am averse to long term chemical intervention), We discussed self catheterisation which could, over a few months, reduce the size of my bladder which could go some way towards solving the leakage problem, which is becoming more troublesome.
Any thoughts and experiences of others here are very much welcomed. Thanks
0 likes, 15 replies
michael68883 andrew57992
Edited
Hello
I have been doing self catheterization since mid June 2022. I had been on flomax since July 2019 and was managing the symptoms of BPH ok. However, as time went on flomax became increasingly ineffective. Needless to say, managing BPH became very difficult. I was getting up 5-6 times a night. During the day while working I had to go every 20-30 minutes. When I went to the urologist I was retaining 1000 ml. He put in a foley catheter which I had in for 2 days until I was taught by a nurse how to self cath. I was horrified with the thought of self cathing. After the first week and subsequent weeks after, self cathing became easier and has been a game changer for me. My bladder has since rehabilitated(at least I think). Now I am considering aquablation. If you have any questions/concerns feel free to contact me.
bob00486 andrew57992
Edited
You could be doing irreparable damage to your bladder You are right to be concerned about your kidneys You are also right to question the urologists Like any profession, some are better than others Keep speaking to ones until you have confidence in their approach Nothing is guaranteed, I'd be wary if they said it was. There are a few classes of drugs that might help your issue and are usually well tolerated. I took them for years and they worked great. Nothing comes without risk Self cathing has risks of stricture and infections There are a lot of new procedures such as Aquablation, Urolift, Rezum and iTind that you might want to research. TURP and Holep can cause some unwanted sexual side effects. Keep researching but don't outsmart yourself. I bet there's a urologist that can put together a plan that works for you I saw 6 of them myself. Good luck
macindian bob00486
Posted
Can you please elaborate on the part of "doing irreparable damage to your bladder" as a result of self cathing? I understand the part of getting infections. In fact, I suffered thru those when I first started a CIC regimen last August. I was retaining close to 800ml due to a distended bladder and weak contractions. I now have come down to 300-400ml with a CIC routine and probably with some help of Bethanecol. I have been resisting any surgical intervention. I am on my 3rd Urologist.
keith42667 bob00486
Posted
"risks of stricture" What is that exactly?
jonathan00596 andrew57992
Posted
Andrew,
Have you yet had an ultrasound or a cystoscopy, to see if you might have an enlarged median lobe (that can act as a "ball valve", and sometimes block off flow)?
Even though your prostate is only slightly enlarged, this might be the case.
With myself my prostate is around 71cc, of which a portion is a significantly enlarged median lobe that sometimes let's me go, and other times not so much. I find that if my bladder gets too full, it "locks up", and makes it very difficult to get things started again. (I'm going for an Aquablation on March 23). I've also noticed that caffeine really aggravates this.
Please consider to run the above possibility by your urologist to see what they think, and hoping that you can resolve your issues.
keith42667 andrew57992
Edited
I've been doing cic for @5 years now. I recently went in for a urodynamics test. My urologist told me that I had an atonic bladder and that surgery would not do me any good. Bad news as I was hoping that by keeping my bladder volume low I could possibly rehap that. So i guess I'll have to do cic the rest of my life. There are worse things that elderly folks have to put up with. The good news I guess is that I don't have to make up my mind regarding surgery. I think I've done a pretty good job of keeping my bladder volumes low with cic but I guess it was already stretched to where irreversable damage had occurred. I didn't think I needed to worry about urodynamics because of the good flow I get with a catheter but I guess it's not the same flow dynamics.
lawrence36690 keith42667
Edited
I know what you mean. After 5 BPH surgeries I was told I have a the same bladder condition. My bladder no longer sends me signals and it will not relax long enough to fully empty. As a result, like you, I use CIC twice a day. The good news is that it takes about 2 minutes and allows me to live a totally normal life and have zero infections in a year and a half. I am 74 years old and I hope I don't lose the ability to use the CIC.
keith42667 lawrence36690
Posted
I'm not sure where you saw that I said twice a day. Maybe you saw where I said two minutes. I typically end up doing cic about 4 times a day.
lawrence36690 keith42667
Edited
Sorry about that. I did misread. Every time I uses the CIC I tell myself it a hell of a lot better than the alternatives.
von92028 keith42667
Posted
Keith and lawrence - I suggest the diagnosis that you have an atonic bladder and therefore will be dependant on self-catheterizing yourself for the test of your life is worth getting the test redone for a second opinion, and if feasible redone at a different test center.
When I had my urodynamics test done the nurse did not give clear instructions when it was time for me to try to void my bladder while the flow was being measured and my muscle force was being measured. Luckily, I interrogated the nurse and figured out that I should not just let the urine come out on its own but, instead, I should push it out as if at home and not using a catheter, which for me is pushing hard. The result of the test in my case was that my bladder muscles were working okay, but if i had not understood that I needed to push hard perhaps I would have "failed" the test.
keith42667 lawrence36690
Posted
No, I agree. I just went to my Urologist last week for a check up. He knows my cathing history and that I've been cathing for over 5 years. The first thing he asked was how many times a day I do it. I said 4. That's on average, but I still have some "feel", sometimes urgency. That goes away if I can't empty within about a minute. Goes completely away, but I do it as soon as I can after that.
If you drink enough water or any other liquids during the day, 2 times is probably not enough. The best thing we can do is once in a while, get a one liter beaker or container and keep a log. Try to keep voiding under 400 ml. I'm not alarmed at 600 ml but its not only continuing to stretch the bladder but also hard on one's kidneys.
keith42667 von92028
Posted
vong92028 I really appreciate what you posted. When they did my urodynamics test, the nurse also had a difficult time getting the electrodes put in the correct place and they did not tell me to push at all. In fact, the first attempt they realized that they had something wrong and weren't getting the signals to their computer. So the second time, I think the doctor was getting pressed for time and seemed to come to the quick conclusion that I have an atonic bladder. The original Urologist that i went to - i'd seen him several time - immediately wanted me to go into surgery in two weeks without even doing a scope of my prostate or anything. But I refused as my cathing was going well and I was, pardon the pun, getting the hang of it. But he never did a Urodynamics test either. He never mentioned an atonic bladder. However, without the catheters I can't even get a drop out, which wasn't the case 5 years ago.
lawrence36690 keith42667
Posted
Thanks Keith. I agree with von that the urodynamic test might be less than perfect for a number of reasons but I also know I retain up to 300ml of urine because at the end of the day, after I void as best I can, that is usually the remainder. Every time I use the CIC I tell myself this sucks, but then, two minutes later I forget about it.
Likewise, at times, when the bladder is rather full, I can void a fair amount but it is never empty.
lawrence36690 keith42667
Posted
Anything new? I am at 2 years and 2 months of CIC- once in the morning and once before bed. Urine flows during the day but bladder just won't empty.
keith42667 lawrence36690
Posted
Thanks for asking.
Nothing new really. My Urologist has an aid call me once in awhile asking how I'm doing. She just calIed me yesterday. I can tell she called from her home because I could hear a child in the background. I don't have any appointments scheduled.
I'm pretty happy with the catheter I chose to use. The Cure hydrophillic fr14 seems to be a good fit for me. The 12 is a little too small and not stiff enough; lets some urine through outside of the catheter. There are a lot of choices of catheters out there. Most of the companies will send you free samples. I like the Cure 14 Fr hydrophillic because it has a bit of glue on the back of the envelope so I can stick it up on my cabinet above my toilet and this enables me free up one hand to insert the catheter while I hold penis with other hand. I know the speedicath one also has the glue on the back but Cure seems to have made theirs more user friendly. Sometimes the 14 seems a little big. If I'm not careful I get a little bit of blood sometimes on rare occasions. But the doc doesn't seem concerned about that and neither am I.
If you have 300 ml retained all day after cathing in the A.M. that sounds like too much to me. I was doing about 4 times a day but the uro doc told me I should increase that to 5 a day. That's still under the 200 a month that medicare allows. So I don't hesitate very long after I feel that first urge to go and don't really count how many I'm using. Still go a lot by feel, not the clock. I find occasionally that i will have to do it two times within about 90 minutes. The time between varies by quite a bit and I thank goodness that I still have some feeling that I can go by. I think that if I was doing like before and waiting until my feeling to pee is frequent and/or urgent I end up retaining over 400 ml. Now if I have any signals at all I go do it. I have the luxury of being retired though, and am usually around the bathroom if I need it.