Life On catheter

Randy, I think you should try the self-cathing routine.  At first I was hesistant, because I didn't think I could do it.  Just the thought of poking something down the inside of the penis, made me cringe.  After one self-cathing practice, it's very easy!  No pain, at all.  Since you are in control of the catheter, anytime, you feel a little discomfort, just stop, and proceed slowly.  I've done it around 60 times now in a couple of months, and I'm very glad that I decided to go the self-cathing route.

HI Randy - just want to ditto what dennis  and arlington and jimjames and glenn write here. Take control of your life back from the doctors! Neil

Dennis, Neal, Jim James, Old Buzzard - Many Thanks for your concerns, advice, and suggestions....Self Cathing + a bladder muscle stimulation drug is the most successful treatment for Urinary Retention per the Mayo Clinic, the #1 Urology Center in the nation....This Thursday, my new URO Doc will run a cystoscope to determine if the REZUM was successful in removing my protrate urethra obstruction..If so, then he'll run a new urodynamics to determine if the bladder muscle can perform its function...If it can, then, we'll start self cathing + medication to stimulate the bladder muscle....Hopefully, All goes well and I'll be able to start voiding normally again soon and regain my life! ..Please pray for success!!...Many Thanks!!..

Hi Randy,

Do you have a link or citation fo the Mayo study/regimen? Curious what drug they are using also whether this approach is long term or simply to rehab the bladder enough for surgery. 

Initially, I started self cathing to try and regain enough bladder elasticity for a successful TURP operation. When I asked if I could skip the operation and continue my bladder rehab by self cathing I was told I could but not to expect any more improvement, and certainly not to expect a cure for my retention. The doctors were wrong on both counts. Over the next couple of years my bladder tone did improve and my retention problem was solved.

Good luck with your urodynamics and please report back the results. You can get some good data from urodynamics and some very iffy data. That is because of the artificial fluid loading that can have a tendency to way overestimate the amount of retention. I don't think there is anything conspiratorial going on, but I'm convinced that thousands of unecessary operations are preformed every year based on data from urodyanmic testing and hospital ultrasound void testing. 

So, typically, if you pass the "pressure" part of the urodynamic test but fail the "retention" part, you are diagnosed I believe with high pressure/obstruction with retention which typically ends up with an operation often after a period of six weeks or so of self cathing. From my experience, and what I've read, rarely (if ever) do the doctors give you a second option of continuing the self catherization longer term to see if the bladder will normalize.

Therefore, if you want the second option -- no surgery -- you will probablym have to advocate it yourself. I did, and looking back, it was the right decision.

Jim

 

Best of luck?  Please keep us ionformed of your progress.

Thanks Jim.  Did/do you have an enlarged median lobe?

According to the doc who did my cystocopy last year, "yes". However, I asked him the question a week after the cystocopy during my follow-up appointment (he rushed out of the room right after the procedure cause he was running late )and I have no idea if he was working from memory or notes on this. 

Jim

Thanks.  If so, then that's encouraging to me.  How many times did you average cathing while you were trying to give your bladder a rest?  I've recently gone from 2 to 3 to 4 but I'm still averaging about 400-450cc's each time.

Arlington,

That's too much retention in my opinion. The usual guidelines are a bit confusing and often state that if you cath more than 400ml then you should increase frequency. However, that doesn't take into account what you might have naturally urinated right before you cathed. I did read one guideline somewhere that made more sense which was to limit your total bladder fluid to under 400ml. This would be the addition of your normal urination just prior to cathing plus the cathed volume. And if you think about it, total bladder volume (not just cathed volume) is what affects your bladder in terms of stretching.

So if I were in your shoes I would up your frequency so that the total volume is under 400ml. And btw, if you have the time, nothing wrong with throwing in another cath either here and there or adding it to your schedule. Studies show that you can cath up to 6x/day without any issues and actually state that the more you cath (up to 6x/day) the less chance you will have of UTI's. 

My personal program was very agressive the first year with 6x/day. I then started to back off and experiment with less frequency as well as daily cialis. But my progress slowed and I went back to 6x/day for another six months or so.

Then all of a sudden my bladder started acting fairly normal. I still get acute retention in the evening (or after a nap) maybe once every week (lately once every 2-3 weeks) if I drink too much fluid, especially it seems beer,  but other than, that my bladder empties down to under 50ml most of the time and I have no other symptons such as urgency, etc. So basically I have gone from cathing 6/day to cathing once every 2-3 weeks. That said, every once in a while if my bladder starts to feel sluggish, I throw in 2-3 days of agressive cathing -- 6x/day -- and it seems to bounce back into shape. Probably have done this this every 2-3 months. I look at it as a "tune up" maintenance

Jim

 

Thanks a lot for the info. Jim.  I think I'll increase to 5x and see what happens.

I've had some side effects with Cialis.  What dosage are you taking?

By the way, my uro said that if my cath volume was over 200cc's I was probably not cathing enough and if it was under 200cc's I was probably cathing too much and not giving my bladder a enough  of a chance to try to void naturally.

I took 5mg daily for several months over a year ago. The idea back then was to see if it could get me off self cathing altogether. While it helped some, but mostly in the beginning, I still needed to self cath. So going back to my plan, I dropped the Cialis because if it couldn't get me off cathing completely, I 'd rather just not take it. 

I also had a few side effects including reflux/heartburn and some mild cold symptons. I found taking one OTC Prilosec about an hour before breakfast got rid of the heartburn.

Just last week I started back with the daily Cialis, but it was more for the other benefits and nothing to do with retention. I don't plan on using it all the time, but it seems beneficial from time to time, not only to performance but also to sexual health by improving the blood circulation. But again, while Cialis can help BPH symptons in many, and I therefore recommend people to try it and see, in my case it was self cathing that did the trick as I only did the Cialis for a relatively short period of time.

Jim 

Arlington,

At best, you uro was simplifying things for you based on what he guessed what your total bladder volume is. Why guess when you can simply add the volume of your natural void plus the volume of your cathed volume?

As to cathing too much, I'd have to check the specific guidelines, but "yes" at  certain point you can decrease catherizations but in your case not relevant now. His point about "not givin the bladder enough of a chance to  naturally void" is valid up to a point.

My thought all along was to exercise the detrussor muscles daily, however it always doesn't have to be done with a natural void. Even when cathing you can exercise the muscles by simulating the act of urination and you will notice the urine comes out of the cath tube faster. For this reason I was not overly concerned if for some day(s) I wasn't naturally urinating much, because that sometimes happens on a very agressive cath schedule. My thinking was that the decompression of the bladder from agressive cathing was more important than more natural voids as long as I exercised the detrussors as described. Also, I sometime would throw in what I might term "natural void" days where I would decrease the cath frequency to give the detrussor's more work. Think of it like working out in the gym -- hard days, easy days and off days. The "off" days might be a lot of cathing with more rest for the detrussors. The "hard days" might be less cathing and more work for the detrussors.

Just don't be afraid of cathing too much as long as you exercise the detrussor's a little each day during cathing and a few time here and there during the week. Remember, most docs look at cathing as more of a stop gap or temporary thing and not as something that can replace an operation in terms of bladder rehab.

Jim 

Thanks a lot, Jim.

HI Randy,

Long term antibiotic will cause side effects. Cipro and lanolin are the last resort medicine although doctors prescribe with out looking for other options. There is a separate forum on these here.

So talk to urologist. Antibiotic is fine to cure uti but not sure to prevent it?