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
michael72708 jimjames
Posted
I use a Speedicath 12 with coude tip. Cathed 2 x last night and didn't feel it. It's intermittent and happens when removing the catheter and about halfway out although next time it happens I'll try to note exactly. It varies between not happening at all most of the time to onetime it was actually stuck. As mentioned I pushed it back in a bit and then it came out. I do normally use the method of a very minute twist from side to side, having seen that recommened by a nurse. Not sure if it would work if actually stuck but will keep it as an option. Most of the time when it happens it's just an odd new thing that has no real effect but just feels like the coude tip is hitting something on the way out in one spot but usually doesn't get stopped. I think that only happened 2x in the last 3 weeks.
Good suggestion about trying an angle adjustment as well as the twisting action.
Well, at least I didn't say you know almost as much as most urologist!
All kidding aside you really help a lot of people and all the more admirable since you're doing it gratis.
I've got one other issue in the CIC realm. I'm 6 weeks out from a PAE with Dr Bagla. Things are improving with less retention, more natural & longer urinations and more natural signals to pee. A little hard to differentiate improvements attributable to PAE as distnguished from CIC since I've been catherizing before and after PAE about 3x a day to decompress bladder. My PVR is now in the 1-200 range usually after peeing. Problem is almost all urine production is during the night. I've been waking up around 3 AM to pee and then cath just to keep bladder decompressed. Last night at 3 I peed 150 and there was 300 PVR. I'm looking for some advice on how to deal with that large production of urine while I sleep since I'm afraid there's not much more to do than cath before bed and again in the middle of the night and yet I feel this is what's keeping me from really decompressing my bladder. I also cath around 10 or 11 AM after showering. Those are my 3x a day. I noticed you previously mentioned napping during the day and compression stockings. Could you elaborate about those options?
?Thanks,Michael.
jimjames michael72708
Posted
Hi Michael,
When things are functioning normally, your nightime urine production is around 20% and daytime production 80%. Unfortunately, as we get older this sometimes reverses. Pretty common. I've had this issue, you seem to have it, lots here report it. Called Nocturia.
One reason for nocturia is fluid buildup in the lower extremeties. Compression stockings and afternoon naps can help redistribute that fluid and get it out of the lower extremeties and absorbed into the body which results in more urine production. Raising your legs while lying on a sofa can also help.
Another strategy is the use of diuretics which force urination. You could ask your doctor for an rx diuretic and try it earlier in the day, say 3-4 PM with the idea that it will promote more urination prior to bedtime and therefore will result in less urination during the night. Just remember that diuretics can effect blood pressure so coordinate things with any other meds you are taking. A couple of cups of coffee in the afternoon sometimes helps me urinate more before bedtime and therefore less during the night.
Another strategy is being aware of salt/sodium intake an trying for a lower sodium diet. A higher sodium diet also causes fluid retention meaning you could drink a lot of water during the day but it could be retained only to unload at night.
There are also other rx drugs to treat nocturia if the other options don't work.
FWIW I found my nocturia has resolved some, even without these strategies, from the early days of self cathing. So, maybe time alone will help some.
Jim
dennis47445 michael72708
Posted
robert97446 jimjames
Posted
Hi Jim, I have just picked up on your very interesting contribution to this thread. Thank you so much for all the valuable information. In fact, you have convinced me not to go ahead with a TURP, which I was supposed to have very soon. I am not convinced that the side effects are worth it, especially when the possibility of CIC is there. I have been doing CIC for four months now, and I my experience is very similar to yours. I do not find it difficult, and it only takes me a minute or two each time. I want to believe that my kidneys will recover (had mild hydronephrosis on one kidney) after a while, and that my bladder will also recover some elasticity, since it had been distended for so long. I can't really pee on my own at this point, but am hoping that will come back a bit. In any case, my main question is about whether there are any dangers to continuing CIC indefinitely. Many of your arguments have convinced me that it is worth avoiding surgery, and I just want to be sure that if I keep doing CIC I will not be damaging my urinary sytem in the long run, although it certainly seems like surgery poses more risk than long-term CIC. I would really appreciate hearing your thoughts on this. I don't know how long you have been doing CIC. Thanks.
jimjames robert97446
Posted
Hi Robert,
Glad you're not finding self cathing (CIC) too difficult. Over time it can get really easy. I'm literally in and out these days in five seconds and the entire process from opening the catheter package to throwing it away is about a minute. About as much of an issue for me now as brushing my teeth.
I also had mild hydronephrosis just prior to self cathing. I was told it would probably resolve in as little as a week once I started emptying my bladder completely with CIC. I did have a follow up ultrasound six weeks after I started self cathing and the hydronephrosis was gone. I'm certain yours is as well as long as you're doing CIC properly.
Properly means that a minimum you are usually not cathing out more than 400ml at any one time. If more than 400ml on average comes out of the catheter than increase the number of times you cath each day. If you're having a natural void prior to self cathing, take that into consideration and try and not let your total bladder volume exceed 400ml. That will help the bladder rehab by not stretching it all the time. How many times a day are you cathing? Any natural voiding at all?
As you may have read earlier in the thread -- it's kinda long
-- I started cathing 6x/day. Now, three years later I only need to cath maybe once every week or so. The rest of the time my bladder performs quite normally with post volume residuals often under 50ml. That is as good as to be expected by an operation like TURP.
As to long term concerns, as long as you self cath properly your kidneys and bladder should be completely protected. Hydronephrosis will be gone because there will be no back pressure from high PVRs. Periodic ultrasounds can confirm this.
The two long term isssue in the literature are UTI's and false passages. False passages can happen although I've never had one. But from what I've read no big deal if you get one as they heal very quickly. Also, probably less likely in the non SCI (spinal chord injury) community because of the dexterity issues.
Same with UTIs. I've had a few but maybe only one real UTI a year if that. UTIs and colonization are different. It's normal to have some bacteria in the urine if you self cath. It does not need to be treated unless you have symptons. Make sure you go to a urologist that understands that or you may end up with unecessary antibiotics. Most GPs will treat any bacteria in the urine. You don't want that.
IMO the issue with UTIs is again more prevelant in the SCI community because of lifestyle and dexterity issues. And that frankly is probably where most of the long term CIC data comes from as urologists don't seem to recommend or track CIC much in the non SCI community.
I read one manual for CIC directed to the SCI community that said something to the effect..."If you drop the catheter on the floor of a public toilet, just pick it up, rinse it off, and use it. In terms of UTIs it's more important to empty your bladder on schedule then to worry about a dropped catheter".
This may be appropriate instruction for someone in a wheel chair who uses a re-usuable red rubber catheter and has a choice of either not cathing or cathing with a compromised catheter. But personally, there is no way I would ever pick up a catheter -- off of any floor -- and re-use it unless it was a real emergency.
Jim
jimjames robert97446
Posted
I just want to add a little in terms of long term risks. As mentioned, most of the longer term data seems to come from the SCI community. But again, I don't think we should have the same problems to the extent that they do both in terms of UTIs and false passages. I mentioned in the previous post the dexterity issue but forgot to mention the nerve damage issue. Many in the SCI community have no pain sensation in that area so in effect they are self cathing "blind". It would be logical then, with no pain feedback, that there would be more false passages and trauma-caused UTI's than if you have pain feedback as someone without a spinal chord injury would.
Jim
robert97446 jimjames
Posted
Thanks for all your help Jim. It is hard for me to get the idea of CIC forever lodged in my brain. I accept all your arguments but the medical establishment just keeps turning people toward surgery, and although I believe most cases of surgery are successful, I am scared when I read stories from people who did have the surgery and were left incontinent, etc. So I am going to stick with CIC for the time being. Right now, without the catheter, I cannot pee at all. I don't really see why rehabilitating the bladder would allow me to pee naturally again, as seems to be the case for you, because what is restricting the urine flow is the prostate collar on the urethra, which will not diminish as a result of CIC, so I guess I do not understand how your program would lead to some kind of remission. If you have any thoughts on this please share. And thank you again for all of your dedication to this community.
Robert
kenneth1955 robert97446
Posted
Robert. Your doing the right thing. I don't do CIC but I know about having a catheter in. It no joke. I guess in and out is better. Keep doing CIC. Jim has been through what your going through. I know when he started he was doing it 6X a day But now his bladder is better. Why be force into a surgery that will cause you more problem. To me it not worth it. When you go to a doctor the doctor said lets fix this problem and if something else comes up lets fix that and on and on. For right now just be safe and things will look better in time. Take care Ken
glenn77 robert97446
Posted
Robert, I am one whose life has been terribly upended by prostate procedures that failed, probably because the doctor screwed up. A GreenLight procedure failed, leaving me totally incontinent, and it was followed by Gyrus TURP to attempt to fix the mess left bt the GL. I was to have an artificial sphincter implanted this past Wednesday, but the new surgeon found that I have stricture that was nearly closed. So the new doctor stopped the surgery,but did a dialation and I woke up deeping disappointed, and fitted with a Foley until Tuesday coming.
Even with all my woes, I accept the fact that most people come through TURP and other procedures OK, and have their QOL improved. The key, I think, is to have a doctor who is really competent with the procedure he/she would use for you. Also, have a doctor who will spend the time with you, answering your probing question. (I'm pretty sure my first doctor was not really well trained and experienced doing the GL. That's on me, but mostly on him.)
hank1953 robert97446
Posted
Hi robert,
I agree with you about serious prostate obstruction not going away due to CIC. There is a possibility that, even though he never mentioned it, Jim did not have a serious case of BPH. He may have had something else which is the main cause of his urinary retention. There are many other causes for urinary retention, including nerves problem and underactive bladder, which may go away with or without bladder rehabilitation. Howerver, when hearing that a man having urinary retention, uros immediately assume that it is BPH and recommend TURP. It happened to me. That is scary. Even though urinary retention is common among women as well.
In the mean time, I am cathing for my urinary retention and Jim has been of tremendous help. After 3 months of CIC, I can urinate a little more easily but that's about it. Of course, I can always hope that my urinary retention will go away (like it did to Jim) one day but if it does, I would think that what I have is not serious BPH but something else.
Hank
kenneth1955 glenn77
Posted
kenneth1955 hank1953
Posted
glenn77 kenneth1955
Posted
No, Tuesday is only to get the Foley removed, and to talk with the doctor about what's next. My wife, who is a retired RN, had to give the doctor permission to go ahead with the dilation, as I was still in the OR under anesthesia. I'm concerned that he may have to do a urethroplasty to fix the stricture, and then wait for spincter later. The hospital my doctor is on the staff actually had done a very advanced procedure, where they take cells from the patient and grow body parts, including urethraes for implanting. I think they've only done it for younger boys to this point, so that may be out for me. Although they did these back in 2006, and they've held up, I don't know whether they continue to do this.
jwrhn1951 robert97446
Posted
Robert
I to am having a hard time getting my head around the fact that I may need to do CIC indefinately. The way I look at it is that its a quality of life issue. Whenever I consider a particular treatment I ask myself, is there a chance the procedure will diminish my quality of life vs not changing what I'm doing now.
For me CIC comes out of that equation as the best option, because preserving quality of life today is my top priority. For others CIC is a burdon and they are willing to gamble they won't be one of the patients who have a treatment failure.
There is no right answer for everyone, just the right answer for your particular case and you are the only one who can decide...
kenneth1955 glenn77
Posted
I have a stricture just before the prostate Right know it ok. I just went through a 6 hour heart ablation. I had to tell them that I only can have a 14F coude catheter that is the only size I can have I don't want a problem. I got mine for kidney stone surgery. My doctor talk about the urethroplasty or dialation I would do the dilation first to much trouble with the other heal is long. The dilation last about a year but I would go for the artificial sphiicter and if I had to be dilated again so be it. Also if your doctor want you to have the urethroplasty Do not have the end to end. Have the graft one. because you will not lose any penile length. Read up on it before you do anything Good luck Ken
kenneth1955 jwrhn1951
Posted
jimjames robert97446
Posted
Hi Robert,
No one had a harder time accepting "CIC forever" than myself when I first started. I was a physical and emotional wreck for a few months. But then things started to get easier and easier, and between that and the passage of time, CIC forever started to bother me less and less and then not at all. It's only been 4 months for you. Give it time. I think you will surprise yourself how much of a non event in your life CIC can become.
And yes, as you inferred, not much support from the medical establishment on the CIC journey. If you get it, feel lucky, but don't expect it. What you can expect is the opposite, anything from ignorant negativism to subltle undermining. But again, with time and success, your confidence in what you are doing will grow and the White coats will be a lot less intimidating.
Just prior to CIC I was retaining around 300-400ml in my bladder and perhaps another 100-300ml in my bladder diverticulum. Finally, it got so bad that the only way I could void was to press on my bladder (Crede Manuever) and litterally pump it out in 50-100ml squirts. Bladder so stretched out that almost no sensation at all of needing to urinate except for a nagging and sometimes painful fullness.
What was going on was two things. The first was that my prostate was restricting my urine flow and therefore causing retention which caused the bladder to stretch and become flaccid. The second was that by stretching the bladder I lost all tone.
What the self cathing does is it decompresses the bladder which gives it a rest. It helps it regain tone. Urologists acknowledge this short term and in fact studies show that a 6 or 12 week (forgot which) period on a catheter (Foley or CIC) improves TURP outcomes. My urologist said this improvement might continue beyond the 12 week period but that after six months or so I would have all the improvement I could get from self cathing.
He was wrong with me. At six months I was still retaining and relied on self cathing to empty my bladder. However, between 12 and 24 months improvement continued. It continued to the point that today I only cath maybe once a week and often that is just to check my PVR. I don't really think I've needed to cath now for three months but then again have cut back on the beer
And as mentioned before natural voids are usually in the 250-300 range and sometimes up to 400ml. PVRs are usually under 100 and sometimes as low as 20 which is basically empty.
Now your prostate isn't my prostate. And your bladder isn't my bladder although I can't think of two many bladders that were as beat up as mine prior to CIC. So while CIC will not of course shrink the prostate and therefore help with the obstruction, it can help the bladder function properly in spite of the obstruction. Maybe not in every case but I'm sure I am not unique. Time will tell with you. But even if you can't get off CIC like I did, it still doesn't mean that it's not the right choice while you consider other options, either those available or those to come.
Jim
jimjames hank1953
Posted
Hank,
You make some very good and thoughful points. In my case, however I have no nerve damage (confirmed by urodynamic testing). I also had very high pressure during the urodymic test which translates into obstruction caused by an enlarged prostate. In other words I did have classical BPH.
But how much obstruction I have compared to someone else I don't know. Maybe my obstruction is much less then Person "A", so fixing my bladder tone with CIC will give me a better result than Person A.
The thing is that you probably will never find this out from your urologist because they don't work that way. As you said, they just do you IPSS, stick their finger in your rectum, check your PVR and decide that you have BPH and need a TURP. It's cook book for them.
So that sort of leaves it up to some of us if we want to go cook book or resist cook book and try and come up with an individualized plan.
I never expected CIC to rehab my bladder completely as it basically has. I was told by my urologist it wouldn't and I accepted that because I preferred self cathing to any of the surgical options. But as time went by, and I continued to see progress after the one year mark, I did start to get optimistic, but honestly I'm as surprised as the next fellow that it worked out as well as it did.
Just want to share my story because if it worked in my case it might work in yours, but even if it doesn't CIC is still a viable option to surgery.
Jim
kenneth1955 jimjames
Posted
jimjames hank1953
Posted
Hank,
I'm going to repeat myself a little but maybe this scenario will be helpful. And please don't take the following as medical science, but more as a layman's way of looking at it.
It most likely starts with an obstruction, that being the prostate. With a healthy and toned bladder, urine may start to flow slower, but things work OK. Let's call this "mild bph" consistent with a "mild" IPSS score. Most may not even know they have mild bph, because the symptons are such that they haven't sought out a urologist yet.
But over time, the obstruction and the high pressures it causes, start to stretch the bladder. The stretched bladder then weakens, loses tone and sensation, and we end up with retention and all the goodies that come with it. Such as day time frequency, multiple night time trips to the bathroom, UTIs, and opening up the kidneys to loss of function.
This would be the moderate or Severe BPH, which correlates to a "moderate" or "severe" IPSS score. Here is where people start usually start seeing a urologist and also end up on sites like this.
Now, as Hank says, CIC can't reduce the obstuction which starts it all. But what it seems to have done, at least in my case, is to have brought me back from severe bph to mild bph. And not just mild bph while using a catheter, but mild bph without having to cath anymore.
Jim
hank1953 jimjames
Posted
Thanks Jim. I have retention of about 250ml. Before my bladder fills up to this point, it is very difficult for me to 'force urinate'. Not much comes out and very weak flow. After it goes beyond the 250ml, I usually can urinate somewhat. The fuller the bladder gets, the easier, the better the flow and if I let my bladder gets to about 600ml, very strong flow. However, I can only manage to NV about 350ml, leaving 250ml to the cath. Also, I usually do not get the urge until my bladder gets to about 600ml.
What do you make of this. Nerves or BPH ? When I cath, I have no resistance at the prostate. The only resistance is at the sphincter, just before urine coming out.
Hank
jimjames hank1953
Posted
Given the numbers, and without self cathing, it would probably only be a matter of time before that "600ml" got to 700, 800 and beyond. Then, if you did nothing else, you would probably end up like I did literally pushing the urine out of your bladder with your hand!
So, given your retention and the amount your bladder is holding, now is the time to do something before it gets worse. Some might have an operation but CIC can do just as well.
How many times a day are you self cathing? I would suggest to go on a schedule so that in most cases your bladder never holds more than 400ml of urine at any time. I understand that right now this may come before your 600ml "sensation point" but that's the best way to decompress your bladder and hopefully to eventually re-set that point lower, so that you will start to get the urge to urinate at around 400ml, not at 600ml.
Just before I started self cathing, I probably didn't feel the sensation to urinate until I had probably 600-800ml in my bladder. In fact, they drained out close to 2000ml from me the first time I self cathed although the amount was no doubt inflated from the xtra fluids I took prior. Today, I usually feel the urge around 400ml. Sometimes a little less.
Jim
jimjames hank1953
Posted
You asked "nerves or bph". Urodynamic testing will tell you but in the vast majority of cases it's BPH, ie high pressure voiding do to obstruction (prostate)
jimjames
Posted
To be more accurate, I probably feel the urge to urinate now around 300ml, maybe a tad lower sometimes. Nowadays, especially if I'm home, I try my best to go to the bathroom as soon as I get the urge. In this scenario I will have a natural void of around 250ml give or take. That doesn't mean this is the "bursting" point where I have to go, so sometimes I wait longer, especially if I'm outside. In this case I might have a natural void between 300 and 400ml with an estimated PVR of 20-100.
hank1953 jimjames
Posted
Thanks Jim for your concern. I am cathing 4X a day and trying not to have too much in my bladder at any time. When I have 600 ml it is either in the middle of the night when I oversleep or when I 'got to experiment' which is not very often. I usually try to VN and cath way before I feel the urge, even at night.
Hank
Howard31850 jimjames
Posted
Is it ok to cath if I still have bleeding from the sphincter? So should I work through it and it will resolve over time even though I aggravate it each time?
jimjames Howard31850
Posted
Neil,
Sitting here I really can't say yes or no to an individual situation, but in general some bleeding is common and not a reason to stop self cathing and while it might irritate the sphincter I haven't read anything about permanent damage to the sphincter from CIC but that again might be a better question addressed to a doctor. If you stop CIC, then you will have to deal with retention which presents other problems. That said, if the bleeding is pronounced, or you start seeing lots of clots, then you should contact your doctor. Ideally you would have a catheter nurse who has seen thousands of cases who could guide you. I never had one but if I wanted to find one I might look at a larger city hospital practice that caters to the SCI (spinal chord injury) community, as self cathing is their go-to way of emptying the bladder.
Meanwhile, try and be as gentle as possible. I found best results when I met resistance with the back and forth slight twist at the sphincter door. Others try coughing or hold a firm but gentle pressure and wait for the door to open itself. Those hot sitz baths you take might help as well. And if it were me, I'd try a muscle relaxant like Valium and see if that makes a difference. And again, do experiment with different catheters, some of them which were recommend by Stebrunner and myself.
Jim
jimjames Howard31850
Posted
Two other thoughts, Neil. One is make sure you are not holding your breath. In fact, do some relaxed belly breathing before and during. And second, maybe try another position other than standing over the toilet? I've never done it but I've read that many do it sitting or even lying down. Perhaps that will make insertion through the sphincter easier. Worth a try.
Jim
kenneth1955 jimjames
Posted
Howard31850 jimjames
Posted
Tkae care.
Neil
Howard31850 kenneth1955
Posted
Ken - I am so sorry to hear about all this. You are correct about listeneing to Jim - learning from him is like trying to drink from a fire hose - there is just so much information.
I hope you get well soon and can enjoy the holidays with your family and friends. I always worry about going into a hospital just for the reasons you mention. I lost both my parents to infections they got in the hospital and the same was true for my wife's parents.
Take care and get well.
Neil
kenneth1955 Howard31850
Posted
Neil Please don't listen to that doctor. He just want you to have the surgery. He does not make any money if you don't. It will take time. I know when then put one in at the hospital they tell you do relax. Take care and God Bless Ken
kenneth1955 Howard31850
Posted
jimjames Howard31850
Posted
Neil,
You will have to experiment and see if additional lube makes it easier or harder, or no difference. I hear you about your urologist. His attitude is quite typical and that's why I suggested you seek someone else in the SCI community if you want hands on help with CIC. Meanwhile, try some of the things that were suggested to you and see what works. I realize it can be a long process, trying this cath or that, changing docs, etc, so maybe first just try a drug to relax your muscles. I suggested valium, but perhaps 5mg Daily Cialis or even Tamusulosin. It could be a temporary thing just until you were able to loosen up the sphincter a little and perhaps heal some.
Jim
Light1 jimjames
Posted
Hi Jim,
Love your advice. Just wanted to let you know that Tamsulosin, Sildosin and that whole class of drugs cause Intra-operative Floppy Iris Syndrome in just about 100% of people who have taken it, even for a short time. It is permanent and does not reverse when you stop taking the drug. The condition makes it much more difficult for an opthalmologist to perform cataract surgery, makes the outcome much less predictable, and can result in failure of the operation and/or misshapen pupils following the surgery (again, permanent). The docs either don't know this or don't care, but they sure don't inform patients the way they should. These drugs are destructive to our health. I took myself off Rapaflo, even though it's now too late but am trying to warn others.
stebrunner kenneth1955
Posted
Hi, Ken,
Bummer about your pneumonia. I ended up with pneumonia after my big urinary retention last winter. Don't know if this will help you, but before going to bed at night, I put vicks vaporub on the soles of my feet and then put socks on. That worked very well at reducing my coughing during the night. I also took the antibiotics and drank lots of water.
Hope you get to feeling better soon, and that you have pleasant holidays with your family. May we all have a healthy 2017!
Stebrunner
kenneth1955 stebrunner
Posted
glenn77 kenneth1955
Posted
Ken,
I'm sorry to hear of your pneumonia. Take care and get well soon, and may 2017 be a better year.
All
glenn77 kenneth1955
Posted
Thanks Ken, will keep all that in mind. I'll see the doctor for the first time tomorrow since my aborted surgery last week.
kenneth1955 glenn77
Posted
jimjames Light1
Posted
Thanks for bringing the association of Floppy Iris Syndrome and Tamsulosin (Flomax) to our attention. You might want to start a thread on this.
At a minimum, anyone contemplating future cataract surgery should consult their opthamologist before taking or continuing on with Tamsulosin. There are also other drugs than can accomplish the same thing as Tamsulosin for BPH, for example Daily 5mg Cialis.
Jim
dennis47445 jimjames
Posted
Jim, I was much like you when I had to wear the Foley for around 3 months. I kept thinking, will I have to wear this catheter, for the rest of my life? I was indeed an emotional wreck! When my uro, asked me what I wanted to do, wear a Foley or CIC, I thought I'd give CIC, a try...glad I did!!! It was the best thing I did for my prostate, since this all began maybe 15 years ago. Now when I think about it, I had a prostate, that was not functioning properly since my 30's I always had to use the restroom alot compared to my friends. Whenever we we went out for a drink, I'm the one that had to go to the restroom all the time. My bladder, was not emptying out totally is what I can guess. As I got older, it progressively got worse. I hope I can say in a couple of years, that my bladder, is now functioning like yours!
jimjames dennis47445
Posted
Hi Dennis,
This thread is getting kinda long, so I just opened a new thread for those who are already self cathing and are having issues and problems. I also think it might be nice to broaden that thread to include positive stories like yours. If you get a chance maybe you can re-post what you just wrote, and anything else you might want to add about your CIC experiences, over to the new thread here:
https://patient.info/forums/discuss/issues-and-problems-with-self-cathing-cic--552686
dennis47445 Light1
Posted
I've been taking doxazosin for around 12 years. Is that one of the drugs that you are talking about?
Light1 dennis47445
Posted
frank74205 kenneth1955
Posted
Hi Ken,Hope your getting over pneumonia .and feeling better.
Today i saw an new urologist,,i have complete retention i have to CIC or cannot void.
I did ask about Uro Lift-He said this won't work if you have urine retention?Ken could you ask this question to your URO.I sure would appreciate it.
Thanks Ken,
frank,
kenneth1955 frank74205
Posted
patrick45945 Light1
Posted
Shortly after I was diagnosed with paroxysmal afib in January 2018 and being cardioverted back into sinus rhythm, I began taking Pradaxa (an anticoagulant or "blood thinner". I stopped taking Saw Palmetto which I had taken for years for prostate health as it interacted with the new blood thinner. When I mentioned this to my PCP, she prescribed Flomax (Tamsulosin). I was back in afib 2 days later. I researched the internet and found that the manufacturer of Flomax had published a warning to health professionals that Flomax could, in rare cases, cause arrhythmia. Oops. Apparently my PCP didn't get the memo. And she first diagnosed my afib!
This taught me a very valuable lesson as I realized that I had to become my own number one health advocate. Doctors are human and make mistakes. I discovered a website about prescription drugs and also found this side effect listed there, so I ran all of my prescribed medications and supplements through a personal "drug list" which I created that checked for interactions. I recommend that you all do the same if you haven't already as it is a very handy easy-to-use tool. I can PM you the link for anyone interested as I know we shouldn't post links here.
On my first visit with my new uro, he wanted to prescribe Flomax to help with my retention and "mild bph", so I shook my head and told him my afib story. He raised his eyebrows like he hadn't heard of this side effect but didn't press the issue.
Bottom line, good idea to research any new medication before taking it.
Patrick