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
Quasar273 jimjames
Posted
Hi Jim.
Thanks for the excellent post. What I am about to ask, might have been discussed in thread - so apologies for any repetition. My dad is 78 and he has BPH for many years - "prostatic hypertrophy with bladder outlet obstruction. prostate is enlarged with its median lobe projecting into the base of the bladder".
(He had a heart attack in 2012 as well).
Six months ago, it got severe and for two days he could not pass urine. We went to see a urologist. He said that your bladder has become quite enlarged. Given your condition (I don't know if this means bladder condition or heart condition or both) it is best to do CIC and not go for any surgery. My dad started doing CIC and was very happy with it for about six months.
Few days back, he started feeling increased resistance towards the end journey of the catheter. Then 2 days back in morning, he was not able to go past that resistance and instead, blood started getting out. His urologist was on leaves, wo we went to see another one. He said all this stuff of putting tubes in like this is for people who don't have BPH. With the kind of BPH you will get urethral stricture and bleeding is because of this. He said I'm going to put you on foley's for a week and then we will decide on your operation once you get clean bill of health from your cardiologist.
Mean while, his old urologist returned. I went to meet him. He said we should not be bothered about the bleeding and resistance so much. He should use more gel and manage it. In the process if there is some bleeding, no worries.
So now we are confused! What to do...
Any suggestions?
PS: The doctors in our country are not very open in explaining things to the patients. So its difficult to have a detailed discussion with them!
thanks for your help.
Cheers!
Omer
Quasar273
Posted
Bladder volume before voiding: 1665
Bladder volume after voiding: 733
Prostate: 77garms
jimjames Quasar273
Posted
The second doctor is ignorant. I could say more but leave it at that. The old urologist seems to be on the right tract with CIC given your dad's history. What kind of catheter is your dad using? Does it have a Coude (bent) tip or not? A Coude tip is designed to go around obstructive prostates and often solves the problem. Sometimes a change in catheter or size of catheter can also make a difference. s to using more gel, better yet is to try a pre-lubricated catheter which are called "hydrophillic" catheters. They tend to be more slippery and therefore easier to insert than the normal catheter with gel.
What country are you from? And btw we have many doctors here in the U.S. who are also not very open in explaining things to patients. That's one of the reasons this forum is so important to so many.
Jim
jimjames Quasar273
Posted
Your dad's bladder looks to be quite distended (stretched) and it's very possible that a prostate reduction surgery or procedure would not help much at the moment. Again, CIC seems to be a very good choice for your dad right now. Down the road, if CIC rehabs his bladder, he could have urodynamic testing to see if a prostate reduction procedure might work, but frankly if he's doing OK with CIC, that might be the best.
As I mentioned in the other post, he should perhaps try a different catheter and/or size. Also, cath frequency is important. Ideally, he should set cath frequency so that his bladder isn't holding more than 400ml at any one time. That would be the amount of the catherized volume plus any natural void just preceding it.
Jim
Jim
kenneth1955 Quasar273
Posted
Quasar273 jimjames
Posted
Jim. Thanks for your reply.
When he got started at CIC, he used straight catheters. Later on we got compac cath. that came with coude tip. Didn't know the benefit of coude tip at that time. The compac cath was becoming a dexterity challenge - it was not easy to roll it out and put it in with two hands. So he switched back to straight ones two weeks ago. Also in coude type, he was using same FR (FR14) as straight one. The ingress with coude type was not easy. We will try with FR12 coude to see it makes things better.
As per his last experience, he was not able to get through the resistance with straight one. The nurse who placed the foley's also said he had to wiggle a lot to get it inside the bladder. So we don't want to do this at home and on a weekend. Will keep fingers crossed till tomorrow.
I'm in Pakistan. Coude type in local market are probably not available. But with little effort I can get these from Dubai. Probably Brad brand is available in Dubai.
I see you spend considerable time giving advise and sharing your experience with others. Thats awesome!
Cheers
Omer.
Quasar273 jimjames
Posted
So when we hear that prostate reduction surgery would not help much.. does it mean that
1. He will still have to do CIC
2. He will loose bladder control. Worse fear that he has is to spend the rest of life in diapers.
Cheers
Omer.
Quasar273 kenneth1955
Posted
Thanks for taking the time out and replying and wishes!
Cheers!
Omer
kenneth1955 Quasar273
Posted
jimjames Quasar273
Posted
See if you can get some hydrophillic Coudes. One good one is the Coloplast Hydrophilic Speedicath. I'd order it in both FR14 and 16. Sometimes the larger size works better with an obstruction. You can also try a 12, never know, but usually you go up with resistance. Never liked the compacts much. He could also try the newer Coloplast FLEX coude. It's a different design from normal coudes. Have to experiment to find the best one as we're all different.
Jim
keith42667 jimjames
Posted
I've been reading these boards for about 6 months now. I don't remember Jim James ever saying to "drink as much water as possible to keep your urine clear". Maybe I just missed it. I'm finding - after doing cic for several months now - that it is very easy to get dehydrated. I don't know if I should worry about that. I don't think that is good! I expect that drinking about 6 cups of black strong coffee a day is complicating things. I've noticed that If I have a couple of glasses of water in about 6 hours of drinking coffee, I have to pee a lot more than if I just drink the coffee alone. Knowing that coffee is a dieuretic makes me think that if I do what is normal; that is drink just the coffee all day; the voiding urge doesn't happen, so I get the feeling I'm running around dehydrated on a normal basis. Sometimes I wonder if it is good to drain my bladder completely 4 or 5 times a day. Maybe when we were 20 years old or so the body just regulates that better and naturally retains some body fluid. Doing it manually might be kind of tricky in some ways. But an empty bladder is certainly a relaxing feeling.
jimjames keith42667
Posted
Hi Keith,
Unless you exercise and sweat a lot, six 8 oz glasses of water should be enough for most folks. "Rrine larity" one way of knowing if you're drinking enough as well as checking specific gravity on a urine dip stick. But again, 6 or 8 glasses of fluid should be more than enough. Coffee can be included as well as tea, soda, fruit juice, soup, etc. That said, coffee is a diuretic so your voiding pattern may be altered. Some find this to their benefit, others not so. Same in terms of your prostate. Got to experiment and find out what works best for you.
Not sure what you mean by "sometimes I wonder if it is good to drain my bladder completely 4 or 5 times a day". A good rule of thumb with CIC is to empty your bladder before it has much more than 400ml in it. That way you will keep the bladder from stretching as well as protect the kidneys.
Jim
jimjames keith42667
Posted
Sorry Keith, I didn't realize you were quoting "amiller" regarding the water thing. I really don't remember if I ever mentioned drinking until your urine is clear but it's out there in the literature. Then again, a lot of the literature is changing about how much water we really need. It used to be more is better, but that may not be the case.
Jim
keith42667 jimjames
Posted
Not sure what you mean by "sometimes I wonder if it is good to drain my bladder completely 4 or 5 times a day" << I think I'm assuming that even h20 in the bladder somehow might hydrate the body to some extent. It might sort of slow down the conveyor belt so to speak of kidneys - bladder - etc. so with more in the bladder the entire body at the cellular level retains slightly more every day. This would be a normal thing regulated by the thyroid or something.... I'm just guessing. But by manually emptying the bladder several times a day it might dry one up faster. An easy solution is just to drink more fluids.
jimjames keith42667
Posted
Jim