Self Catherization. An alternative to Turp, Greenlight, HoLEP...?

With the internet, we have access to lots of information, so I think we should research what we can, and ultimately make up our own minds.

Thanks ZD! I just posted elsewhere in this maze of a thread on the origin of the French sizing and how to convert to mm. As a math professor you might find that interesting.

I've been to the great university teaching hospitals as well. It can be hit or miss with doctors, and fancy diplommas sometimes don't translate the way we would assume. The urologist who wanted to give me the TURP had it all on paper, but all the hospital department he headed  at that time only did TURP, so that's all he seemed to know about. 

Glad your arrythmia is under control. I've had 5 or 6 afib episodes around six years apart and it can be a confusing arena which lots of different opinions on how to treat. 

-- Jim

Just an observation, is it about time to have a Part 2 of this thread? There is so much invauabe information here but for me at least I cant follow more than the recent posts....

JW,

Probably a good idea soon as I agree these threads are really hard to navigate. 

That said, while part of the problem is the length, another factor is the unorthodox reply format on this site that let's you respond to either the original post or to an individual poster within the thread. Depending on which you choose -- and I doubt if everyone here even knows it works like this -- your reply will go into a different cue. All this makes searching chronologically difficult unless you tediously go page by page from the beginning. 

One thing I found helpful if you want to get consecutive posts on an individual poster is to click on their name and then scroll down the page and click on "all replies". Now you will get a chronological order of at least one person's post. 

Jim

In my case two ablations seem to have worked, but I started with cardioversions until they ceased working.

Hi Jim, I have to ask you what you think about this issue? I have been trying to cut down on my caths,from 6 x to 5x.What happens is i get this pain on my right side ,i think it's  a kidney discomfort. Do you think holding off on cathing is a good thing to do?I get up at bedtime sometimes after 2 hours.Itry to hold off,but i can't. I"m still in retention.this medicine is not working. Do you think i will someday be able to pee,even with an enlrarged prostate, and a bladder problem.

Thanks so very much for your response.

 

ZD,

All of my afib attacks were preceded by either drinking a very cold beverage too fast or eating ice cream to fast. A little research suggests stimulation the Vagus nerve is the culprit . What's funny is that the cardiologists and electrophysiologists give me all this advice, direction and treatment options -- when all they really have to say is "Jim, what I suggest is that you slow down when you drink cold fluids or foods!!!".

Sometimes I think their training gets in the way of simple logic.

Jim

So you are using a Coude then? At what point do you feel the snag when taking it out? Is there pain with the snag or does it just slow down and/or get stuck a little? Is it really stuck hard or just a little? 

I do remember the cath getting a little stuck coming out a few times. Not sure if it was during a regular cath or where I was doing an irrigation. During the latter the catheter is in for several minutes so I chalked it up to the lubricant breaking down. 

Doesn't sound like a stricture if it's just coming out as opposed to going in and if it's just feels a little sticky. If/when it happens you could try a little twist (just a few degrees each way) to loosen it or play around with your penis angle. Sometimes I just pull it out straight down like in the same position as when it empties into the toilet, but I think it's easier if you angle it up when pulling out like how you start the process.

You said: 

" I think you know more than most urologists about cathing."

----------------

I know it was intended to be, but actually not much of a complement

Jim

Hi Jim - on the lubrication issue I still cannot get an answer from Colpolast about adding   a  lubricant to their Speedicaths so as not to conflict with their own lubricants.

Have you ever tried first injecting  a lubricant into the urethra and then waiting a minute before inserting the cath? This is a genral question not specific to Speedicaths since it could again conflict with tier coatings. But I wonder if it could help with the sharp burning pain I get every time when I hit the start of the prostate? Once I get into the prostate i am fine to the end.

Another comment on my experiment: I rpeated it with with a dried catheter and found that the water hardly entered the narrow slits on the side. So the hydrophilic coatings must really help pull the pee into the catheter as well as reducing capillary resistance at the slits.

Thanks

Neil

 

Neil, The only time I used a lubricant was with the red rubber catheters which pretty much needed them. Never injected the lubricant into the urethra but just very liberally lubricated either the first few inches of the catheter or let the whole length of the catheter lubricate itself by running the catheter through a blob of lubricant on a gloved hand while I inserted it. I have heard of people injecting I think Lydocaine gel or something into the urethra to help with the pain, but then again should probably check with Coloplast. What is the story with them? Have you been able to get through? 

I'll get back to you soon on your mad experiments

Jim

Thanks  I just had a bad cathing experience. I got  to the sphincter ok but had trouble getting in. I waited a few minutes with gentlle pressure and then pushed it. I just got all  blood out so I stopped. Did I do something bad? Neil

Neil, Did you get clumps? Was it bright red or rust colored? It doesn't take much blood to turn urine red. Maybe you should try a non coude (very gently). If it gets by the prostat it might get into your bladder easier. Also, not a bad time to try a sitz bath prior to cathing and see if that helps. You don't have to buy anything, just sit in the tub and fill it with very hot water just covering your lap.

Jim

Another thought Neil. Why don't you try a red rubber -- coude and non coude -- and see what happens with the blood. They are much, much softer than the hydrophillics and you can glob on as much external lubricant as you want. It's true the process will be slower but it's worth experimenting and if it works it may let your tissues heal some so you would be able to get back to the hydrophillics. Bard was the red rubber I used. If I can find the exact model I will let you know. 

Jim

Thanks Jim. That's what I get for being too cockee (no pun intended) with things going too good lately. I forgot that this is not a game and is very serious business. I just did a natural void now and some large pieces of tissue came out first followed by more blood. The urine stream seemd to be getting back to normal color near the end. There was no pain at all.

I am so disgusted with myself. What were those pieces of tissue? they looked like clots. Did I damage my sphincter? I will try to get those caths you mention but for tonight do I dare to cath again? Gee whiz I am mad at myself. For some reason I was having a tough time getting into the bladder and I got too impatient and pushed too hard - so stupid. I got past the prostate ok and I am careful to keep the tip pointed up.

Do you know what happened and if I can safely cath tonight?

Thanks for your help. I don't know what we would do w/o you.

Neil

 

One other thing but I don't know if it is relevant. Before this cath I had a feeling to have abowel movement but decided not to as I was in a hurry to watch the 6 pm news. Could that have caused my sphincter to be more diffiuclt to open? In the past I would always first have a bowel movement if the feeling was there and then cath. Just something to mention.

Would soaking in the tub lie you mention cause any infections in the urethra since it is so irritated and maybe still open a bit? My tub is not sterile.

During this cath, first there was some pinkish urine which quickly turned to normal urine color. But then near the end it turned to bright red and just freaked me out - it was like in the Ten Commandments movie where the Pharaoh is pouring a pitcher of water that suddenly turns to blood. There were some small tissue pieces - is that what you mean by clumps?

Take care and thanks. Neil

Neil,

There are going to be ups and downs in this thing. I highly doubt any permanent damage has been done to anything. Something may be raw, however, and since in the past you have been able to go off self cathing for awhile, maybe take a break for a day or two and hopefully things will heal a little. But if you have to cath, I don't see a problem. After that, try the red rubbers and don't forget to try some sitz baths.

Blood in and of itself is not that unusual in the self cathing population, even long term, although the clots you seem to describe are mostly associated with the first couple of months.

It's too bad you don't have someone on the ground there -- like an experienced cath nurse -- who can evaluate things more closely.

Personally, I never found someone like that with the urologists I saw, but if I were to look I'd probably seek out someone someone in a teaching hospital with a large SCI (spinal chord injury) practice, as the SCI community uses CIC as their primary means of voiding.

Jim

Thanks Jim. Are the red rubbers as soft or flexible as the 12s as I cannot get the 12s through my prostate? Thanks.

Neil, Constipation can put pressure on the urethra so possibly. Lots of variables here. The idea of a sitz bath is to apply wet heat to the prostate area, No reason for water to get into the urethra but if concerned maybe cover it with something. 

I was thinking the "tissue pieces" you described were blood clots which can happen.  If concerned, run the urine through a strainer to examine and perhaps show to your doc.

Jim

Good point. The red rubbers are really a different animal compared to the Speedicaths. Get samples in 14 and 16. Start with the 14 and if it doesn't get by the prostate easy, try the 16. You might also want to invest in some surgical gloves as you will have to feed the red rubbers in. Forget about the "dive bomb" technique with them!

Lastly, if you start to see other symptons, consider UTI's can also produce bleeding. You don't want to treat with antibiotics unecessarily, but on the other hand they can help if necessary.

Jim

Thanks Jim - you are the best. I got so over  confident. I do test my pee every day with the home kit and the results have always been good - just a little leukacytes.

I will try your suggestion s and see if I can avoid cathing tonight. Where do the clots come from? Is the inner sphincter highly vascular so just a little scratch will cause a big bleed - like a nose bleed if the inside gets scratched?

Or do the clots come from inside the urtehra wall, or the prostate wall, or inside the bladder itself if I was too rough?

Thanks

Neil

"A little leukacytes" is to be expected. I think clots can originate from multiple places in in there. You should also probably drink more water to wash things out but not too much more while you're not cathing.

Jim

Hi Neil, Just wanted to mention this. I found using Bard sure grip hydrolic cateters are less pain to use. The sure grip never touches the catheter,which i like ,this would cause less UTI.They come in different size also,

just thought id mention this.

Hi, Neil,

Sorry to hear you're having difficulties getting past your prostate. When I started CIC they gave me coloplast self-cath catherters with an olive tip. It's a catheter you have to apply lube to use. I found it to be a little more flexible than the speedicath model--but it's certainly no noodle. It has a colored stripe that runs the length of the catheter to help you keep the tip alligned. I think the olive tip also helps users pass large prostates like ours. It's something to consider.

Hope things get better for you.

Stebrunner

Hi Stebrunner, Frank, Jim

Thanks for your suggestions.

I finally got a response from my local Coloplast marketing rep and she said it was ok to add more lubricant to the Speedicath hydrophilic catheters. She said there was no issue of incompatibility. I told her my concern was the combination could form a glue in my urethra and seal it and she laughed. So I have some individual sterile gel packs and will try one and let you know if it helps. She also wanted to know why I needed more lubricant and I told her that it takes me so long to get by my prostate and past the inner sphincter that it dries out.

I checked my leukocytes and nitrites this morning after my disaster last night and they were both zero!! It was a tough night not cathing - up every hour peeing about 50ml (no pushing and meditating) then back to sleep for more nightmares from the pressure in my bladder. I will try to make it to midnight before cathing to give the damaged tissue time to heal. The pee is clear now with no more clots.

Michael - I have the identical problem you have at night. I guess it is very common. I tried coffee in the late afternoon and elevating my feet but it didn't help. I also tried putting a heating pad on my bladder on low in bed and sleeping sitting up and that seemed to help a bit. I guess the kidneys just keep putting out urine 24/7 but during the day we keep up with it by doing frequent natural voids.

Jim - thanks so much for your patience and time. If not for you I would have had surgery long ago and ruined m life with regrets.

Neil

Hi Stebrunner and all,

Now I got a second phone call from a Coloplast service rep. She told me to NOT add any additional lubricant to the Speedicath - contrary to what the first rep told me. When I pressed her on it the reason was not incompatibility between lubricants but rather maintaining the sterile seal of the Speedicaths. She was very adamant about not opening up the package to add lubricant as that could risk contamination. But I'll still try it and see if it helps at all.

Thanks,

Neil

Hi Neil, 

That's good news. So really glob on the lube. Not just at the tip but all over. I used Surgilube I believe, very slippery. You might find it easier with a surgical glove as you may be touching the catheter unless you figure out a way not to. Hopefully, this will work, but I'd go ahead with Plan "B" anyway -- get hold of some red rubbers and a non-coude Speedicath. While you're getting samples, you could also try one of Coloplast's vinyl non-hydrophillic catheters which require external lube. 

As to the night time issue. "Normal" urination pattern is that most of the urine is produced during the day and only a small portion at night. As we get older the new normal can reverse that process which is what a lot of us deal with. Depending on each's days individual factors (fluid intake, caffeine, diet, sodium intake, activities, nap or not) I either sleep through the night or get up once or twice to urinate. Doesn't really bother me that much because I've been doing that for so long. But for those it really bothers more attention can be paid to the factors, above plus your doctor could prescribe meds including diuretics. Sleep Apnea can also cause excessive night time urination, and that can be tested for.

Jim

Hi Neil, I don't recall reading on this forum,if you had surgery? If you did what was it,and were you content with the results?

thanks. frank

Hi Frank - I had a PAE at UNC in August but it was a failure even though I was told I was an ideal candidadte due to my large size and lack of a median lobe and other obstructions. Other than that I have been on alpha-blockers and Avodart/Proscar for over 10 years.

Take care

Neil

Neil sorry that it did not work right.  Did it at least make the prostate smaller?  Ken

Thanks Ken - it did apparently reduce the prostate size from 280gm to 180gm but there was no reduction in my symptoms ( IPSS score still 30).

One note of caution regarding PAE: I was quietly told by another radiologist after my PAE that there have been reports of men developing prostate cancer after the PAE. The reason is that indolent (passive) tumors residing in the prostate that may have been happily quiet for 100 years are suddenly starved of blood supply so they aggressively start to develop blood vessels (angiogenesis) which makes them grow. He said the PAE community was just now starting to gather data on this.

So when I had my 3T-MRI the end of October to see if the PAE had any effect on my BPH it should a highly suspicious lesion in the peripheral zone that was given a PI RADS score of 4 which means "likely cancer". I hope to have it biopsied soon.

So the message here is that even minimally invasive methods like PAE have unknown consequences down the road.

Have a Merry Christmas and a healthy happy New Year Ken.

Neil

Thanks Neil.  I hope you and your family have a good holiday.  Try to forget about the prostate until after the holiday enjoy your family and have some fun  Ken