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

Yes information is the key.  Make sure you are aware of all the side effect before you have anything done.  A doctr will only tell you some thing and more of the time he will always say everything will be the same which it will not.  Have you ever consider a Urolift. It may pull that 3rd lobe away from the bladder and open it up. I had one in 2015 it worked great.  My prostate was the size of a orange.  As of Friday it is half the size it was last year.    The PAE sound ok I don't know if sex matters but with a holep it will cause dry orgasm.  I had them with a pill I was on.  Did not like them and some men avoid sex after. Because it does not feel the same.  It hurt the bladder.  But ever man is diffrent.  You pick what you want and just get all the information before you have to deal with the out come..Good luck Ken

Stebrunner,

If you self catherize (CIC) then you can know how much is left in your bladder without a sonogram. The medical name for how much is left in your bladder is post void residual (PVR).

To compute the PVR, simply urinate (if you are able) and then do CIC right after.  The amount of urine that comes out with the catheter is your PVR. That's why I recommend urinating into some sort of measuring cup so you can measure the PVR precisely. 

Five times a day is a reasonable start. But as a general rule, you want to keep your PVR 400cc or below. So, if your PVR is over 400cc, then increase the times a day you do CIC. If the PVR drops below 150cc, then decrease the times you do CIC. 

You should also know that CIC can not only be helpful prior to surgery (as your doctor suggests) but CIC in many cases can completely replace surgery, as in my case. They wanted to do a TURP but I opted for CIC. That was three years ago.  

As far as the size of your prostate interfering with CIC, this probably will not be a problem as the catheters are very small and are designed to go around an obstructive prostate. Especially the "coude" (curved tip) style catheter which I use. It's designed to go around large prostates.  

Jim

Ok, I think I'm finally figuring this out. Thought I'd share in case it helps someone else. Last night I tried a 3rd time before I went to bed and succeeded. This morning it took 2 attempts before succeeding, and I've successully cathed 3 times today. I'm finding that the speedicath fr14 with coude tip works the best for me. To begin I start with Jim's technique where I pull my penis to a 45 degree angle, grasp the catheter by the funnel and drop the coude end into my uretha, letting gravity help pull it in. Once in a distance, I move my penis to a 90 degree angle and apply gentle but steady pressure. Someone on a site called The Natural Prostate suggests pulling firmly on your penis, and when you reach a tough spot at the prostate you don't force it, you finesse it with gentle pressure and slightly twist side to side or to the side so that the coude tip can find its way past the prostate. I've been doing this, but also for me I find that there's a point if I move my penis to a 135 degree angle it helps me through the sphincter more easily. Sometimes I hit a spot that feels like shards of glass, but then I back off and gently try to finesse my way through it. It's tough now, but my 2nd day has already been much easier than the first. As you say, Jim, it will be second nature in a couple of weeks.

Hello.................  Thank you for sharing with us.  I am glad you were able to help yourself and maybe others.  I admire any man that can do that to them self.    I myself can't stand catheters and If I have to have one my urologist put it in before I wake up.  I had a bad expreaince in 2014 when they force one in me without telling me.  I felt like a piece of meat never again while I'm up.  I just had a procedure done last Friday.  Had a catheter in for 4 days. It hurt and I still hurt can't even hold myself to go to the bathroom. I think the catheter was to big.  I have a stricture and I was told that I can not have anything bigger they a 12FR coude catheter He put in a straight 18fr.  I will be talking with him next week.  Everything work fine but for some reason I cannot move my sphincter muscle.  Life goes on and we will do whatever we can to help live a full life.  Good luck to you..Ken

Glad things are starting to get better. It is a process, but learning the technique and also your body getting used to the catheter. I had a terrible time the first few weeks, and as I've stated before, now it's about as time consuming and traumatic as brushing my teeth.

Technique wise, if your're using the coude tip, and to state the obvious, make sure the tip is lined up correctly. The curve should face you, and therefore the guide mark on the catheter funnel should be toward you. 

You also might experiment with the Speeidcath 12F with Coude tip. It' thinner, more flexible, and therefore in theory should go in easier. I started with the 14F but now use the the 12F exclusively. The rule is that you should use the smallest size catheter than will work.

The only caveat with the smaller sizes, like the 12F, is that because of their flexiblility they are more likely to "kink up" if they hit a snag. So at least for me, this just requires a little more finese when hitting the two pressure points, ie navigating the prostate and anal spinicter. Steady pressure is the key, and a back and forth twisting when feeling resistance can be helpful, as well as lowering the taught penis as described before. For some CIC is real easy to learn and get used to. For others, like myself, it took some time. Give it two weeks and you'll be OK. Practice makes perfect. 

Jim

 

Just wanted to add, you should never force the catheter. Gentle pressure is the key, and if it won't go in, then try backing up a little, then some more pressure in, a little twisting, changing the penis angle, etc. Everything is very subltle, think "gentle" and then "more gentle". 

Also, as to changing to the 12F, as mentioned it can be a little more tricky at first because it's more flexible, especially when you initially feed it in -- so if you can't master it after a few tries, put it away until you fully master using the 14F. Then you can go back at a later time and try the 12. 

At least in the U.S., Coloplast is very good with free samples, so call them if your doctor doesn't have the size you want to try. Also, there are a number of web sites where you can buy catheters without a RX, which is a good way to try different catheters if the manufacturer won't send you samples. Some sites make you purchase by the box but some let you just buy one or two. I tried at least a dozen different types, but the Coloplast Speedicath (with coude tip) was by far the best. Of course what's best for me might not be best for you. 

Jim,

Thought I was getting the knack of CIC, but I've been struggling big time the for past 2 days. My first day I managed to CIC 4 times, then the past 2 days 2 times per day. This morning I've attempted it 7 times with no success. I keep hitting the prostate--I keep trying to finesse my way around it, using different angles of the cath and different angles of my penis. If I don't get through by 24 hours from my last CIC, I'm afraid I'll have to go in to the emergency room and have another Foley put in, and I dread that.

Once I get past the prostate I have no trouble getting through my sphincter and into the bladder. I have noticed the last couple of times that I've successfully CIC'd that I feel pain along my penis as I drain. Is that normal in the beginning?

I don't know the size of my prostate other than my uro said it's huge with a 3rd median lobe. He said it was too large to use a TURP on--not that I would've wanted that. My hope is to CIC until I can have a PAE or less invasive procedure done, but time is running out. I may have to have a HoLEP done, even though it comes with retrograde ejactulation, just so I can CIC without complications.

So far most of my CIC success has been with the Colopast Speedicath. Have succeeded with the Hollister VaPro hydrophillic, but when I went to pull it out, it felt like all the lube had scrapped off, making the withdrawl very painful. Would a smaller size of Speedicath be easier to get past my prostate?

BTW, thank you for telling me about the marker on the funnel end of a coude catheter that shows where the tip is. My uro nurse did not explain that to me. She had me use a Magic3 hydrophillic when I was in the clinic, and also didn't explain the sleeve that allows you to hold the catheter while inserting it (I thought it was part of the funnel). I was trying to hold the slippery thing by the tube, making my first attempt even more difficult.

Any other suggestions for getting past the prostate would be appreaciated. Thanks!

Stebrunner

Sorry to hear you're having difficulties with CIC. Here are my thoughts but please keep in mind that I only have my own experience with CIC to go by, and of course I'm not a professional.

Not surprising you didn't receive proper instruction, but with a Coude tip it's important you align it correctly. The raised guide line on the funnel should be toward your body so that the bend of the catheter tip is toward your body, not away from it.

Since catheters are routinely used for enlarged prostates, I would think that your problem is more of time and practice as opposed to prostate size, but hopefully your urologist can confirm this. 

As to going down a size (to a 12F) it's certainly worth a try. On one hand, the 12F is narrower than the 14F, but on the other hand it's also more flexible. More flexible means that if for example you hit the prostate, instead of pushing through and around, the catheter might just bunch up. Again no harm trying it. 

For me, what I've found helpful is a very subtle and gentle twisting back and forth when get to the prostate. Not so far to misalign the Coude tip, but just enough to help it pass around the prostate, just like for example an awl will penetrate easier if you twist it a little as opposed to just pushing it. That, and at the same time dropping the angle so that the head of the penis is now facing the wall in front of you as opposed to toward the ceiling. You can also play around with how taught you hold the penis out. 

I don't know what medical services are available to you, but ideally a nurse who specializes in, or is very familiar with CIC could help you if your efforts do not improve. If you cannot find this person within your doc's urinary practice, you might seek out another doc with more experience, probably someone in a large, teaching hospital. Another avenue to explore is reaching out to a catheter nurse in the SCI (spinal chord injury) Community, as CIC is widely practiced in that community. 

As to the pain as you drain -- pain, discomfort, bleeding, etc, is pretty common for the first couple of weeks. I had all of the aforementioned and was told it was normal. After about three weeks those symptons mostly went away, and later on they went away completly. As I have mentioned before, at a certain point it becomes about as traumatic as brushing your teeth.

Jim

Jim,

Thanks again for sharing your knowledge about CIC. I ended up in the ER, and they put another Foley in. The good news is that I successfully self cathed 10 times so I know I can do it--once the prostate is out of the way. Two uros have told me that I will never regain bladder function, but that I need a procedure that clear out some of the prostate and will allow me to CIC. I was hoping to be able to do PAE, but with a huge prostate with very large median lobe pressing into the bladder-and no bladder function, I don't think this will be possible. I'm going to call an interventional radiologist group in Denver--hope to talk to Dr. Charles Nutting to see if I am a good candidate. The only other option I have found is the HoLEP, and I'm headed to the Mayo Clinic for a consultation there. Not crazy about the possible side effects--i.e. retrograde ejaculation; but it seems I'm running out of time. Can't keep a Foley in forever.

Stebrunner

Sorry you ended up in the ER, but as you said, in the process you learned how to do CIC if it's necessary after your prostate procedure. Don't know your timeline, but you might want to look into a Suprapubic Catheter instead of a Foley. With the Suprapubic, they go directly into the bladder through the abdomen so there are no tubes in the penis. I believe you can even get them fitted with a flip valve so that you can be free of a drain bag and just empty the bladder directly into the toilet when it gets full. 

Sorry you ended up in the ER, but as you said, in the process you learned how to do CIC if it's necessary after your prostate procedure. Don't know your timeline, but you might want to look into a Suprapubic Catheter instead of a Foley. With the Suprapubic, they go directly into the bladder through the abdomen so there are no tubes in the penis. I believe you can even get them fitted with a flip valve so that you can be free of a drain bag and just empty the bladder directly into the toilet when it gets full. 

Sorry you ended up in the ER, but as you said, in the process you learned how to do CIC if it's necessary after your prostate procedure. Don't know your timeline, but you might want to look into a Suprapubic Catheter instead of a Foley. With the Suprapubic, they go directly into the bladder through the abdomen so there are no tubes in the penis. I believe you can even get them fitted with a flip valve so that you can be free of a drain bag and just empty the bladder directly into the toilet when it gets full. 

Jim,

Had a consultation with the Mayo Clinic on having a HoLEP done. They said 40% of men having this procedure there have had atonic bladders. After the procedure about 80% regain bladder function. I asked if this meant they were urinating as before, and they answered that some of the men urinate using their abdominal muscles, not their bladder muscle, and in addition some have to use their hand--I think this is the creede manuver. As you've been able to void on your own again, are you using your bladder muscle, or are you using your abdomenal muscles?

It seems like your getting ride of one problem for another  I would look into something else..Good luck Ken

Hi Stebrunner,

Mayo is probably referring to the "Valsava Manuever" when they mention an assist using the abdominal muscles. And, yes, the "Crede Manuever" is when you use your hands, external to your bladder,  to literally push the urine out. 

Prior to self catherization (CIC) I had to use the Crede manuever in order to urinate. And even with Crede, I was holding unacceptably large post void residuals. My bladder was atonic.

With CIC, my bladder gradually started to decompress, rest and regain some of its elasticicity. 

Today, I won't say it's normal, but most of the time I can urinate 250-300cc of urine, with a decent stream, without the use of crede or valsalva. The post void residual is not always zero, but acceptable. 

The exceptions, as discussed here (or perhaps other threads) is that after periods of inactivity (nap, sleeping, couch, etc. ) I cannot initiate urination (feel pain when I try to start the stream). The fix is to walk around anywhere from one to fifteen minutes. Then I can usually urinate normally. 

Recently, I was unable to urinate normally due to the fact that I was prescribed some anti-inflammatories (NSAIDs) and for the first time in many months resorted to CIC. Since then, I have started a very limited CIC schedule (0-2x a day) as an alternative to "walking around". Like for example, in the middle of the night, a lot easier to self catherizize then walk around for fifteen minutes in order to urinate. But during the day, when normally active, no  problems, and even during the night often no problems, as I think the issue is also volume related as well as activity related so the amount of fluid, and or sodium intake, may effect things. 

I would say this. If you end up in the 20% group that need either Valsalva or Crede, I would suggest you speak to your doctor about CIC instead. Not only is it more efficient, but you might be able to somewhat rehabilitate your bladder like I did. 

Are you still on a Foley? When is the operation scheduled? Good luck.

Jim

Jim,

Thanks again for your response. Yes, I'm still on a Foley. The last one was put in by the ER, and they used a Medline 100% silicone catheter. It hurt like h#ll going in, but it's been much more comfortable than the Bard caths my uro's office uses. No surgery scheduled yet. I have an appointment with a new uro at the end of the month to see about having bladder stones out. After that my plan is to go with a PAE to get my prostate out of the way so I can CIC. My back up option is the HoLEP. When I see the new uro, I may ask to try CIC again, however, I don't want to end up in the ER again. However, the ER nurse did a better job of inserting the Foley than my uro's nurses.

Right now my goal is to get my prostate out of the way so I can CIC. If by chance I regain bladder function along the way, I'll do a happy dance. But I must add that your posts and the posts of others on CIC have taken away my fear of that option.

Stebrunner

Hi, Jim,

Last week I changed urologists. What a difference that made in my life! The new uro's staff is very well trained. They removed my Foley cath with no pain, and installed one with no pain. This week they removed the Foley and gave me thorough training on self cathing, and they walked me through it a couple of times. They said I had a UTI, which probably inflamed my urethra and prostate making self cathing difficult, and put me on antibiotics.

They also  recommended that I go with a size FR 18 catheter with a coude tip because my prostate is so large. I have some Speedicaths in that size ordered. Can't say it's been easy, but I successfully cathed 3 times yesterday after I left the uro's office, and 4 times already today.  My urethra is pretty raw from having a Foley in for 3 months and from the UTI so I've been using some Lidocaine.

They also gave me some AZO, the medicine that's supposed to provide urinary pain relief and turns your urine orange. Not sure how well that is working as I'm not able to void at all on my own, so I don't think it's coating my urethra.

I do have another question for you. It's been getting easier to put the intermittent catheter in. However, I'm surprised at my difficulty getting it out after I drain. I withdraw it with my penis pointed down toward the toilet with a steady slow motion. It goes quite well until about the last 6 or 7 inches. Then it's like my urethra clamps down. I try to relax and finesse it out the rest of the way. But howdy does it hurt. Then for the last 2", it eases up. Did you ever have this happen? Do you have a technique to recommend when withdrawing a catheter after you've voided?

Thanks!

Stebrunner

Hello.  Not a fan of catheters but sometime they have to be used.  I had blood clogs and had sugery with a 24 hr flush.  Was in the hospital 3 days.  When the nurse removed the catheter if was like a suction cup it hurt when she got it out but I was glad to get it out.  Have you tryed to raise your penis up some because it sounds like your about at the blend of the urethra.  Don't know if you even notice that they bring the penis straight up to get it pass that area.  Take care  Ken 

Hi Stebrunner,

I'm happy to hear that you've found a new urologist with a well trained staff. 

I understand why they recommended you go with FR18 as the protocol is to go to a bigger catheter size when there is an obstruction such as a very big or enlarged prostate. As I understand it, the thinking is that the larger size catheters are less likely to kink when they hit an obstruction and therefore can push through/around it more easily.

That said, FR 18 is pretty big, and I'm wondering if the process might be easier and less painfu if you discussed with your doctors experimenting with FR16 or even back to FR14. The overall concept is to use the smallest catheter size that will work. And now that you're being treated with antibiotics to reduce the UTI and swelling, it's possible that a size that didn't work before, might work now. 

The other thing is that the Speedicath is a fairly stiff catheter to start with, so that the 14 or 16 FR size in Speedicath, may offer the same stiffness and ease of penetration as an 18 FR with other models. You really have to experiment.

As to your difficulty in getting the catheter out, again going to a smaller size, if it works, might help. But yes, I have had what might be a similar problem a few times, but only maybe half a dozen times out of thousands. 

In my case, it felt like it got "sticky" on the way out, almost as if the hydrophillic lubricant had started to dry up. If I remember correctly, I just relaxed, twisted it gently, possibly pushed it in very little and then pulled it our slowly. Not sure if this is what is going on with you or not. 

The other thing is that in general, you can pull the catheter out quicker than putting it in. So, the problem could be that you're pulling it out either too slowly or in stages (stop start) and therefore losing inertia. Maybe try pulling it out in one steady quicker motion, but again, always be gentle, always finesse things. 

As to the angle, you could try different angles. I pay less attention to the angle going out, but last night I noticed that the angle was somewhere between pointing down toward the toilet and pointing toward the opposite wall. The angle also doesn't have to remain constant while the catheter is in the motion of coming out. After awhile you body give you feedback as to what makes insertion (or removal) easier. 

Also, you're relatively new to the procedure and often some of the pain issues clear up after a couple of weeks. Personally, I had a horrible time self catherizing until about three weeks in. Then things got gradually better and finally a virtually painless experience. 

I assume they have done some type of examination or imaging to eliminate strictures as the problem?

Good luck and glad to hear you're off the Foley. 

Ken,

Thanks for your suggestion! I've been using the past two days, and have been having much less pain when withdrawing the catheter. I've also reduced my cathing from 5 times a day to 4 to allow more time for my urethra to rest and heal.

Stebrunner

Jim,

Thanks for your input! Slowly, I'm getting the knack of CICing. I think you may be right about using the FR 14 or 16 in the Speedicath. I tried to CIC today with a FR 18 Coloplast Self Cath (that you have to lubricate yourself) after having sex, and my urethra was incredibly sore. Failed on that attempt. Then I tried a Speedicath FR 14, that I had leftover from before, and succeeded. The smaller catheter did not irritate my urethra nearly as much, and withdrawing it was easier, too. I have catheter samples ordered. Speedicath is not available in the FR 18 coude tip--the largest they make for a coude tip is a FR 16. My uro nurse was adamant that I use a FR 18, but I think I will be fine with the FR 16 in the Speedicath--maybe even a FR 14--and I think it will be better for my urethra.

Pulling out the catheter is getting easier. I've been using your suggestion on pulling out a bit faster and Ken's suggestion on using the same angle I use on insertion.

Stebrunner

Yes, use the smallest size that doesn't kink (bend). And if it does start to kink, just pull back a touch, try twisting it very gently and then push forward. When I pull out I use an angle between the insertion angle (straight up) and toward the wall, but not pointed down. But whatever works for you. Things should get better with time as both your body an mind adjust to the process. It will end up virtually painless just give it awhile. I started with FR14 but am now able to use FR12 due to practice. I don't think I could have started with FR12 because of its flexiblity. 

Curious, how are you guiding it in? Do you hold onto the catheter itself to guide it in, or just guide it in touching the plastic funnel? I started with the former (very slippery) but soon was able to guide it in by just touching the funnel. Makes for a more sterile process that way because your hands never touch the part of the catheter that goes in. 

Jim

Jim,

Already in 5 days it's gotten easier. On Monday it took 4 tries and 45 minutes to successfully do a CIC. Now I can pretty much do it in 1 try in about 15 minutes. One hurdle now is trying to relax while I do it. My tension comes from anticipated pain, plus anxiety that I will fail and end up in the ER for another Foley. As you say, I am learning to read my body. Yesterday I when having trouble inserting, I suddenly realized I had flexed my buttocks. When I relaxed them, it things went much better. To relax I used deep breathing--sometimes holding a breath and then releasing it. Sometimes I use coughs or wiggling my toes. Sometimes a combination of them all.

As far as insertion technique. When using the catheter I have to lube myself, I lube the first 4 or 5" and then hold the catheter midway where there isn't lube. This gives me good control. I always prep the head of my penis with Wet Ones. Then hold the canal open with my thumb and forefinger. Once in, I hold my penis at about a 45 degree angle. I use lots of lube. It sort of pools at the opening as I push in, but that excess also helps lubricate the rest of the catheter as it goes in.

When using the hydrophillic Speedicath, I borrow your technique that you posted earlier about holding the catheter by the funnel. The Speedicath is stiffer than other catheters I've tried, so I have good control by holding the funnel. I clean my penis head with the Wet Ones, then hold my penis almost straight up, open the canal with my thumb and forefinger, and drop it in, allowing gravity to get things started. Once in, I lower the angle to about 45 degrees, and push in using a slight undulating motion. Things usually go smoothly until I hit the first sphincter.

That's where the pain/discomfort hits and where I have to use my relaxation techniques the most. At this point I hold my penis at an angle between 45 to 90 degrees. I hold it very taut, without squeezing the urethra. I keep a steady but gentle pressure on the sphincter and try to finesse the catheter through. I can tell the instant I get past, and then I'm more relaxed. I keep the slight undulating motion going until I reach the bladder sphincter. Once there, a quick cough usually gets me in. The rest, as they say, is history! LOL!

Stebrunner

Are you taking tamsulosin (flomax)? While a muscle relaxant like tamsulosin isn't necessary for self catherization, in your case it might  help relax the sphincter muscles until you get used to the procedure. Daily Cialis might help as well, or perhaps other relaxants that your medical team might prescribe. 

The other thing is to carefully monitor yourself and make sure you don't develop a UTI, because trauma can make you more suspectible to UTI's even with the best sterile technique.

In my case, I developed a UTI early when I started self catherization, no doubt caused mostly by the trauma. Unfortunately my medical team did not treat the UTI agressively enough and it ended up causing all sorts of problems both with CIC and eventually spread to my testes.

There can be a fine line in CIC patients between colonization and UTI's, but I personally think it best to err on the side of caution in the initial stages of CIC especially when a moderate degree of trauma is involved as it appears in your case. Using a dip stick like Siemens Multisix 10SG is a good idea. If both leucocytes and nitrites are positive,  you might then have your urologist do periodic cultures to see what is going on. Foul smelling urine is also one indication but they won't always treat with antibiotics for that. On the other hand if  you start running a low grade fever they probably would.

Also be aware if any pain starts occuring in the testes which could be epididymis. I got that after my first couple of weeks of CIC and it had to be treated with antibiotics. Once the infection cleared the CIC went much better. 

I haven't time it, but I'm usually in and starting to drain within 30 seconds, so hopefully you will cut way down on your insertion time as you and your body gets used to the procedure.

Jim

Jim,

Thanks again for your input. No, I'm not on the drugs you mentioned. I'm not much of one to take drugs, but my new uro's staff gave me some Lidocaine and some AZO to help me get startedi wth CIC. I used the Lidocaine when using the FR 18 catheters, and it helped. For the past couple of days I've been using the Speedicath FR 14s, and I have very little insertion pain with them. I also haven't had any bleeding with them.

My urethra is pretty sore right now--only on day 6 of CIC. I've had sex a couple of times since I've started. When I get an erection, my urethra pain is intense. There isn't really any pain when I orgasim, but howdy afterward, my urethra feels really raw. It made CICing very difficult for a while after. Is this common when you start CICing?

Also, last night I had one difficult cathing. Then I remembered to shake the Speedicath (before opening the packet) to better coat the catheter with the hydorphillic lube. Whoa! What a difference that made! Things went much better after I did that.

When I saw my new uro's PA two weeks ago, she determined that I had a UTI so she put me on a 10-day course of antibiotics. I just finished that last night. I'll be checking in with her this week to see where I am with this UTI. I'll also watch for the other things you mentioned. Since I was on a Foley for almost 3 months, I am assuming that my urinary tract is colonized.

I may ask her about other drugs to help me relax my sphincter. Your advice to listen to your body is really helping me with this, though. Last night I had trouble getting past the 1st sphincter and discovered it helpful to push my hips forward and to lean back a little--while doing my deep breath relaxation. That's a new trick that's helping me past that 1st hurdle.

My catheter samples should arrive in the next day or two. They are sending me Speedicaths in a FR 18 coude tip and two types of LoFric in FR 18 with coude tips. One of the LoFrics is the Origo. Have you tried that one? It will be more flexible than the Speedicath. It's designed so you can fold it and put it in your pocket when you're away from home. I'm hoping to use the Speedicath at home and the LoFric when I'm out and about.

Stebrunner

Hi Stebrunner,

Happy to hear things are getting better. 

1. Sex first week during CIC -- I can tell you're doing better in some ways than I was during my first week of CIC. Honestly, sex was the last thing on my mind for the first few weeks I was having so many issues with pain, bleeding, not to mention feeling mentally defeated. So, I really can't say if what you're experiencing after sex is common, other than to say that sex can sometimes inflame the prostate so I imagine that is it, and nothing to worry about. I'm sure once your CIC becomes virtually painless that any sexual issues will disappear as well. 

2. I rarely shake the Speedicath before opening, but probably should. I do remember a few (and really just a few) times when the coating didn't seem as slippery as others and I'm sure if I shook it like you did that wouldn't have been an issue. And when you say you shake it, I assume you are shaking it up and down as the fluid appears to settle in the bottom somewhat, but I guess shaking it in all directions would be even better. 

3. Almost everyone who does CIC is colonized after a few weeks, but nothing to worry about. Colonization is not the same as a UTI, or let's say it's an asumptomatic UTI. That said, good idea to watch out for UTI symptons and if things start moving in that direction get a culture and don't delay treatment if indeed it is a UTI, however a postiive culture in and of itself doesn't indicate UTI. 

4. I think Tamusalin (Flomax) might be worth a try to see if it relaxes the sphincter muscles and makes CIC easier. No downside to try it for a few days as it works pretty fast. If that doesn't work, maybe ask about other muscle relaxers perhaps in the valium category.

5. Try and get a variety of sizes to try. Again, 18 is pretty big and if a smaler size works, then the convention to go with the smaller size. I find that FR14 is stiff enough to push through whatever, at least with me. FR12, my current choice takes a little more finese.

6. Yes, I've tried the Lofrics, Origo, as well as practically every catheter out there including the closed systems. For me, Speedicath was the best, and really the only one (other than the red rubber ones) that didn't hurt me passing by the prostate. Of course my anatomy is different from yours so you may have a different experience. I do understand your concern about traveling, and the Lofrics promotes the fact that you can bend it making it easier to fit into your pocket. In fact, they even have a little notch you can stick one end in that holds it in the bent position. My advice is to bend one and keep it bent for several hours and then see how it works. I found that it didn't work very well if kept bent over several hours. And this is especially true with the coude tip where it's imperative that the tip faces the correct direction. If you're working with a bent catheter, it can be very difficult to keep the coude in the right position during the entire procedure. 

The only negative I have with the Speedicath is that it's also not very useful after bending, but I'll put up with that given all the positives. What I used to do was carry them in a small back pack where there was no need to bend. It could also be a briefcase. When it comes to going to the bathroom in "stealth mode" when out and about, you could either bring the back pack with you, or some folks stick them in their socks under the pant legs. I also thought about using one catheter at home (Speedicath) and another more foldable one when traveling, but I never found a foldable one that I liked. The most foldable ones btw are the red rubber catheters (Bard makes some good ones) as they are extremely soft and bendable and they can be kept bent in your pocket for a long period of time without issues using them. The red rubber catheters are a very different experience, but some people prefer them over the more rigid ones like Speedicath. You will definitely want to use a lube with the red rubbers and might have to go up a size from what you use with the more rigid Speedicaths. 

There is also the so called "pocket catheter" which I believe Coloplast also makes. Just know that currently it doesn't come in a coude tip plus in order to make them retract they use different size tubes, one nested within another. So, while you may order a 14FR, the outside tube may be as large as 18FR and therefore more friction.

Jim

Hi, Jim,

It's getting easier! Just completed my 2nd week of CICing, but still have some questions.

1. During the week I've had some mystery pains in my lower abdomen and pubic area--although the is not when I'm actually cathing. The pains come and go. Was this your experience?

2. A couple of days ago I struggled with completing a CIC. I tried 2 times and failed. Then gave myself 15 minutes to rest before trying again. During that time a bladder spasm came on so I went to the toilet. To my surprise I peed about 30 to 40 drops. Within 10 minutes this happened 2 more times. Then I cathed easily to drain out the remaining urine. It hasn't happened for 2 days, but then before I cathed a few minutes ago, I peed a tiny squirt. They told me that my bladder would never regain function, but now I'm thinking it could be possible. Is this how things started for you?

3. I've been using Wet Ones to clean the head of my penis before CICing. Noticed this week that my skin is reacting to the chemical in Wet Ones. What do you or others use? I liked the Wet Ones because they come in individual packets for when you're away from home.

4. You were right. Sex has gotten easier this week. No more pain.

5. I tried the LoFric Origo catheter in a FR 16, and it worked really well. I think the FR 16 size made it more stiff. The insertion grip along the tube doesn't work for me so I remove it and insert by the funnel as I do with the Speedicath. I will try your suggestion of folding the Origo for a couple of hours to see how well it travels. BTW, I shake the Speedicath by turning it upside down and back a few times. Since I'm using a larger diameter, evenly distributing the lube makes it more comfortable.

6. Discovered today before a CIC that the marker on the funnel didn't align with the coude tip. I had to angle the maker to the right when inserting. I must remember to check that alignment every time.

7. Sometimes when the catheter is in and starting to drain, I find that I can't push it in any further. (My cathing instructions say to push in another 1 cm to the 2nd eye hole once it starts to drain) It's draining but when I push, it feels like I'm hitting the side of the bladder or something. Could this be where my prostate is pushing into the side of the bladder?

Like you said, it can take some time to become comfortable with CIC, and I'm amazed I've come this far in 2 weeks. I'm finding this experience empowering. And I no longer feel pushed or rushed into making a decision about surgery. Thank you!

Stebrunner 

Stebrunner,

Good to hear your situation with CIC has improved so much in the last two weeks. Look for it to easier and easier as time goes by until it's as routine as brushing your teeth.

1. It's been so long since I started CIC, and I had so many issues the first couple of weeks, that hard to remember if I had any pain in lower abdomen. Important thing is to keep montoring for UTI's, both by yourself (urine dipsticks) and with periodic cultures at your doctors. UTI's can manifest themself in a number of ways and areas and that possibly includes the lower abdomen, but that doesn't mean that's what it is.

2. Again, can't remember the details of the first two weeks, but I don't think I tried to urinate without the catheter during that period. As far as what the doctors told you, I was told similar, and yet at this point my bladder functions pretty near normal much of the time emptying out fairly completely without the catheter. Be patient and see how things go in that regard, but my hunch is that you will regain some bladder function and possibly a lot of function over time but that could take months. 

In this regard, how many times a day are you catherizing and how much urine is coming out each time? You should start keeping a log if you haven't already. Rule of thumb is that you shouldn't have more than 400cc of urine in your bladder at any one time. If you do, then catherize more often. The less urine your bladder keeps holding, the more it will decompress and the quicker you might be able to regain some bladder function. Also, you don't have to be completely passive when you do CIC. By this I mean while it's true all you have to do is insert the catheter and let it drain, you can also aide the process by pushing out while the catheter is draining using the same muscles you use when you normally urinated. You will see when you do this that the urine comes out faster. This exercises the detrusor (bladder) muscles. 

3. If Wet Ones irritate you, then stop and use something else. It could be the alcohol if they contain some, or perhaps something else in the formulation. Alternatives are provodine iodine swabs, liquid or wipes. (I used the swabs and preferred the "three pack" as they were more saturated than the single pack. You can also try BZK towlettes or spray a couple of times with Microcyn Spray also called Hydrocleanse. Some people just use soap or water. But whatever you use, should not irritate. I tried alcohol (hand cleaner) at one point and found it very irritating. 

4. As I said, couldn't even think of sex at week 2, so you're way ahead of me in that regard.

5. Yes, definitely test the foldability of any catheter in the controlled setting of your home before taking them outside. Important to note that just because a catheter recovers from folding in let's say an hour or two, doesn't mean it necessarily will work properly after being folder for let's say a day or two. Experiment. 

6. I think the Speedicath sort of aligns pretty well but I always do glance down at the tip and use that as a visual guide.

7. Hard to say, but sometimes the bladder spichter muscles causes resistance like that, especially if the bladder has been recently drained. Don't force anything. If  it's draining, and you hit resistance goiing in farther, just let it drain. 

CIC is totally empowering. With practice and patience, it let's you drain your bladder completely any time you want it. No operation in the world will give you more thorough emptying on demand! Of course operations can accomplish other things but not that. Also, not more running to the doctor or ER because of acute retention. You can take care of that in five minutes!

Jim

 

Hi, Jim,

My uro told me to CIC 4 to 6 times a day. I've been shooting for 5 and have been very consistent. Haven't been keeping a log on my volumes yet, but I will in time. At present, all my focus is on getting the catheter in!

The Speedicath FR 16s came in, and I've been using them. I thought they would be a compromise with my uro's nurse, who wanted me to go with FR 18s. Seems that the FR 16s irritate my urethra, too. And I've been having trouble getting them past the sphincter at the bladder. Tonight I couldn't get through--I coughed and tried relaxation techniques with no luck--and when I pulled the catheter out there was blood on the end. (Hope I didn't have a false passage. How do you know if you've done that?)

I still had a FR 14 on hand so I used that and successfully cathed with no problem--and no blood. It was much easier to pass the sphincter at the bladder and more comfortable on insertion and withdrawl.

The LoFric Origo catheters in sizes FR 14 and 16 were both easier and more comfortable for me to use. Possibly because they are slightly more flexible than the Speedicath. May have to reorder catheters. The Speedicath FR 16 is too rough on my urethra.

Over the past 2 days I've peed drops of urine on my own more and more. Someday I may even have a stream!

Once I get CIC mastered, it will be time to have my bladder stones removed. I am dreading that! But it probably should be done as one of the stones is 2 cm in diameter, and I heard that they can bring on UTI's. When the uro described how he will remove them, I felt kind of ill.

Stebrunner

Since the 14's work, and you seem to prefer more flexible, I suggest you try the Speedicath FR12, which I use. If it slides right in, you may be surprised how comfortable it is. If it kinks when it hits the sphicters, no harm, just pull it out and chalk it up to experience. Technique wise, with the FR12, if it does start to bend at the spincters, don't force it but try and finese it in with a subtle twisting motion. 

In all due respect to the nurse, your urethra and spincter mucles know a lot more than she ever will in this regard!  You have got to experiment and find out what works for your system. 

Jim

Hi, Jim,

Mixed bag this week. I hoped the 3rd week of CIC would be easier than the 2nd, but that hasn't been the case. I ran out of the FR14s in both Speedicath and Origo (have them ordered and hope they arrive tomorrow) so I've been using the Self-Cath FR 18s, that I have to lube, and the Speedicath FR 16s.

Today I used the Self-Cath FR18 and fought with it all the way to the bladder sphincter. Then when I was there I suddenly had the urge to urinate, and before I knew it, I had urine coming out around the outside of the catheter--not much but some. I held still, and after the spasm, I tried to push into the bladder and failed. Have you had urine come out around the outside of the catheter when CICing? Should I have tried to push into the bladder at that point? When I pulled the catheter out there was a bit of blood and what looked like mucus on the end.

I pulled the Self-Cath out and immediately tried the Speedicath FR16, and once again I couldn't get past the first sphincter. Decided to rest a bit before trying again. The FR 16s hydrophilics are easier to insert, but for some reason I can't get them complete a cathing most of the time. When I pulled the catheter out, it came out clean. Sure hope the FR 14s some tomorrow!

BTW, some of the literature I read about CIC says there's a first sphincter where the urethra goes through the prostate, and a 2nd one at the bladder. Other literature doesn't mention this first sphincter. Is there a first sphincter? All I know is that when I hit the spot where the prostate is, it feels like I've hit a wall. With the FR 14s, I'm able to finesse my way through.

On the plus side this week, on Saturday morning I peed a week stream for about 3 seconds--followed by a second weak stream of 2 seconds. It hasn't happened since, but again, it gives me hope.

Stebrunner

Yes, there are two points of resistance. One around the prostate and the second the sphincter muscle to the bladder. I'm guessing you partially got into the bladder enough to let a little urine out but far not enough for the catheter to do it's thing, therefore the urine coming flowing a little outside of the bladder. You did the right thing but not forcing and trying again. Sometimes with the internal sphincter (to the bladder) it will shut if pessure is released (partial insertion or bladder emptying) so in this case you might have to wait awhile.

You really want to make sure you have PLENTY of extra catheters in the size that work on hand. If you try and cut it too close, then you will run out if: (a) you have to CIC more than planned; (b) you have to throw a way a catheter because it didn't penetrate or got contaminated; (c) your delivery was late. You cannot have too many extras on hand for peace of mind and security. If the 18's and 16's don't work, stop using them and only use the 14's.  

I would say a few seconds of natural urination is a real positive after nothing at all. 

Things will get better. At this point I hardly even feel the two points of resistance because I'm not only completely relaxed during the process but my body has adjusted.  I timed the process the other day, and I'm into my bladder with urine flowing 30 seconds after I pick up the catheter. Most of the 30 seconds is opening the package, spraying the penis and meatus with disinfectant and aiming for the opening. Probably only 3 or 4 seconds to push it in. 

Things will improve. 

Jim

Correction: In the first paragraph of my previous post, I meant to say:

 therefore the urine coming flowing a little outside of the CATHETER"...

How many catheters  month does your insurance pay for? In the U.S. you can get around 200 a month paid for by Medicare. Even if you only are told to catherize 4 times a day, get your doctor to write an Rx for the maximum amount to take into account failed attempts, etc. 

Jim

 

My insurance is through BCBS, and they paid for 200. When I made my first order over a week ago, I ordered 200 of the FR16s, thinking they would work well because I succeeded with the sample. My mistake. I had the supply co. send a few more samples of the FR14s just to make sure they are better for me--but ran out. Had to make due with the FR16s and FR18s over the weekend. Believe me I learned my lesson. The FR14s should arrive tomorrow. Your point is well taken. I will have extras on hand.

Thanks for the info on the bladder sphincter. I did take a rest from my last attempt for about 20 minutes or so. When I tried after that, I succeeded. If I have another partial entry, I'll know what to do.

Jim, if you hadn't been so generous in sharing your experience of CIC on this forum, I would've given up on it after one week. Now I've made it 3 weeks, and I'm confident that it's going to get better and better. I understand why a lot of men with BPH don't consider CIC as an treatment option, but I think they're missing out on a viable option. If nothing else, it allows a guy time to make the best decision possible.

Stebrunner

Stebrunner,

Thanks for the nice words. I had a rough time of it myself for the first couple of months. Not so much in getting it in, but with infections, etc. And like I've said, over time the process became really nothing at all. 

If you have a stock of the FR16's on hand, the catheter distributor should swap them out for FR14's if that is working better. I swapped out sizes and catheter types quite a few times in the beginning until I settled on the type and size catheter that worked best.

Now I have just have Speedicath's Coude in 12 and 14FR. I started with 14, then switched to 12, but last week opened a pack of 14 by mistake and they felt fine, not as hard as I remembered them back a few years ago. So my body has really adjusted.

I'll probably start ordering more 14's now. They go in quicker (no bending) and the urine comes out quicker (bigger diameter). The reason I suggested you try the 12's is that you might get a little more detrussor exercise out of them since the urine flows out slower naturally with them. But at this point of the game, I think you should use whatever size goes in and out easier.

Are you working on consciously trying to relax the sphicters as you pass the catheter? Make sure you breathe real easy and not try and hold your breath. I know it's hard to relax when you feel pain, but the pain should get less and less and then it will be easier to relax. That's when it really gets easier by leaps and bounds. 

Jim

 

Hi, Jim,

The medical supply company screwed up and my new catheters did not arrive on Tuesday--nor today. In the meantime I've been using the Coloplast Self-Cath FR18s. That's the one I mentioned a couple of posts ago. I experienced a urge to urinate when I got to the bladder sphincter, and had urine come out from outside the catheter and not through the tube.

It happened a 2nd time today. Before I got through the bladder sphincter (I think), I suddenly had an urge to urinate, and some urine (not much) came out on the outside of the catheter--nothing came out through the tube. I waited for the urge to pass, and after it did, I very carefully tried to push in. When I did that, there was no resistance whatsoever. It was far enough in to be in the bladder, but nothing came out. I pulled the catheter out, and it looked fine. There was no blood, etc. Did I create a false passage?

I gave my urethra a rest for about an hour. Then I tried again. Once again, when I got really close to the bladder, I had a sudden strong urge to urinate, but no urine passed on the outside of the catheter. I gently kept twisting and finessing and coughing--until I got the catheter into the bladder. When I did, nothing came out! I twisted it a bit and still nothing. Then I quickly flexed my abdominal muscles, and that's when it started draining as it typically should. Why would it not start to drain before? Am I doing something wrong?

I put a call into my urology nurse, but she didn't return my call this afternoon. I also called Coloplast, and they didn't have an answer. This issue is creating more CIC anxiety for me.

As you have suggested, I do try to relax as I CIC. My tension gets high when I hit the points of resistance. Not sure how to relax the sphincter. I usually try deep breathing or coughing. I sometimes try flexing muscles in my lower abdomen, holding them and then releasing. I think it will be easier to pass the sphincters when I get the smaller catheters.

Sure hope the smaller catheters arrive tomorrow!!

Stebrunner

Hi Stebrunner,

Sorry for the difficulties you're having. As to your questions, I can only take an educated guess. So with that in mind...

As when happened before, I thnk the urine passing on the outside of the tube was because the catheter wasn't far enough into the bladder to drain, but just far enough to open the sphincter releasing urine outside the catheter instead of draining it through the catheter.

As to why you couldn't drain when inside the bladder I just don't know. Possible that you didn't have a full bladder and you were too far inside? This sometimes happens at the end of the CIC process, so in this case you pull it out slightly to empty out the remaining urine which would be on the bottom of the bladder. Perhaps in your case enough urine escaped outside the bladder to create that situation? Not sure what happened the second time, but possible the bladder filled up some inbetween but not sure why nothing came out until you started pushing. Possible the big catheter combined with pressure from the sphincter combined with your tension closed the catheter up? Really just guessing here. 

The good news is that you finally drained out. And hopefully when you get the 14F things will work out OK. Do you have a medical supply store near where you live? It's possible you could pick up some FR14's until the Speedicath's arrive. I doubt they would have Speedicath's, but if you find a relatively stiff vinyl one it might work out. You will need external lube unless they have some hydrophillics.

I was under the impression that false passengers are higher up in the urethra, but anything is possible. But if it was a false passage then why would the cough make the urine flow. So doesn't sound like that. Maybe the cough just relaxed things enough to change the pressure needed to get things going. Just guessing again.

See what happens with the 14F. If you keep having similar problems of being in the bladder without a flow you really should see your doctor and have him take a look inside 

Jim

 

I sent you a private message. 

Another thought since you're having a lot of pain and tension during the process. Are you taking Tamsulosin (flomax)? If not, ask your doctor for a rx as it should help relax things until you get more use to the process. Another thought is Pyridium. Pyridium is often prescribed temporarily for the burning pain of a UTI but I've heard it being used for painful catherization as well. Never taken it, but apparently it significantly reduces pain which might help you relax. Definitely run it by your doctor or nurse. Perhaps you could take both Tamsulosin and Pyridium until things calm down. I believe Pyridium is both rx and OTC.

Jim

I have some Pyridium, also known as AZO, but stopped taking it because I didn't think it was working. My understanding is that it coats the bladder and urethra, and since I void so little (a few drops) naturally, I thought it would not coat my urethra. I'm not taking Tamsulosin. I'll ask the nurse tomorrow what she recommends. I'm taking some of the AZO tonight before I CIC to see if that helps.

Stebrunner

If that's the case maybe try and release a little bit of the Azo saturated urine into the urethra when you pull the catheter out. I always put my finger on the opening on the plastic funnel end when pulling it out so it doesn't drip, but I guess if you let go of opening in a pulsing fashion you would then leave some Azo in the urethra.

Hi Stebrunner,

After a little research, everything that is going on in your above scenario could be consistent with bladder spasms. More so than with a false passage.  Bladder spasms could cause your leekage outside the catheter, no urine coming out even when you're in the bladder (detrussor muscle clamping), waiting a bit and then it comes out when contracting muscles, etc. It also could account for why the smaller size is working better. 

From what I read going to a smaller size often helps.(Go back to the 14, try the 12)  Also, increasing the frequency of catherization also could help by cutting down urine volume in the bladder. (a urine log could come in handy here). Lastly, and possibly most important to get you through this would be anti-spasmodic drugs called anticholinergics. 

Of course, get everything confirmed by your nurse, but if she just shakes her head, etc., ask to see the doctor. No reason to suffer when there appear to be simple steps and drugs available to help things along. 

Jim

. 

 

Hi, Jim,

My uro nurse called mid morning and confirmed your belief that I probably had strong bladder spasms. Thanks for researching that. I told her how I had been inserting the catheters, and she advised me to absolutely NOT twist or undulate the catheter while pushing it in. She said if I met some resistence to pull back a little and then gently push in again. She couldn't emphasize this method enough. She told me that my twisting of the catether could lead to a false passage.

The nurse said to do the same when I get to the bladder sphincter. Just to use gentle pressure and to do deep relaxed breathing. She said absolutely no twisting at the bladder sphincter as I could easily damage it.

This goes against what I had read online (the gentle twisting back and forth), but I thought I'd give it a try. And it worked for me! I've cathed twice today with much less pain. (happy dance time!)

Last night I discovered another possible issue with the Speedicath FR16s I have been using. I used one to cath last night, but it caused a lot of pain when I got to the prostate. I got a little way into the prostate area and stopped because of the pain. When I tried to pull out, it seemed like the catheter was glued in. Had to apply gentle pressure and twisting to get it free. Took a close look at the tip after I pulled out, and saw some gunk that almost looked like it was part of the catheter tube. It felt very tacky. No wonder my urethra was sticking to it! I thought it might be mucus. I called the Coloplast rep about it, and she said it sounds like a manufacturing defect. I tried cathing with another--after inspecting it--and it worked just fine.

Some Speedicath FR14s are being overnighted to me. I imagine cathing will be much faster and more comfortable with the smaller catheters. Thanks again for your help!

Stebrunner

Stebrunner,

Happy to hear you're making progress. Don't know why the nurse thinks a gentle twist wil cause a false passage, but isn't this the same nurse that was insistent you use FR18, when it appears you really need FR14  The trick really is to be gentle be it a gentle twist or pulling back and gently pushing in again. 

Did she give you some medications for the spasms? If not, I would ask to take something at least for the short term. But back to false passages, bladder spasms can be a contributing cause so again another reason to drop down in size (the smaller the catheter size, the less likely to go into spasm)  and try some medications to calm things down. Try and get some samples of FR12 as well. If they don't work, toss them, but if they do, you may find them the easiest of all to get in. 

Jim

Not to disparage your cath nurse, I don't know her/him, BUT I'll tell you a little about the one I had. And this was in a major teaching hospital, in a major city, working under the top doc there.

Cath nurse says: Red rubbers are the best, don't bother with hydrophillics. 

My take: No idea where she picked this up from. 

Cath nurse says: Use a single catheter for a week, then discard and use a new one.

My take: But hey, they say 'disposable', and my insurance will pay for a new one each time, plus I don't like doing laundry. So, "no thanks". 

Cath nurse says: Don't bother washing the head of your penis or meatus, it won't make any difference in terms of uti's. 

My take: Well, I followed her instructions and got a UTI on day 2.

Cath nurse says: Cath twice a day, in the morning and evening.

My take: Given the fact that my kidney were producing 2 liters of urine a day, and that I couldn't do a natural void at that point, that would have meant I'd be holding a liter of urine most of the time. I did some research, did the math, and told her I wanted to cath six times a day. She said, "OK".

Cath nurse says: You don't have a UTI, it's colonization.

My take: Really, then what's with all the blood, smelly and cloudy urine, pain, positive dip stick tests and a low grade fever. Shortly thereafter, I ended up leaving that practice and my new doc diagnosed me with a raging UTI that developed into Epididymitis, which I don't wish on anyone. Had to literally have my balls in a sling for a week they hurt so much! 

So, it's not that you shouldn't listen to your doc or nurse, of course you should, but listen with an intelligent ear. If something doesn't sound right or gibe, do a little research. Even if it does sound right, do a little research. It's incredible how often these so-called professionals get things wrong. This site is in part a testament to that fact.

Jim

 

Do not let them use anything bigger then you can take.  You tell them no.  I went into bladder spasms and they do hurt like hell.  I have a stricture just before the prostate.  It only has a 16 opening.  I will not let them put in anything bigger then a 14fr coude catheter.  Told the nurse and she went and got one.She was very nice.  Did not get it in the first ry.  Had to bring it out and turn it a little.   I had to be flushed out had blood cloogs around the prostate.  The doctor found them when he did surgery to stop the bleeding.  No one will put in anything bigger then what I can take...Ken 

That is true.  Information is the key.  That nurse needs a new job.  When I was in the hospital the last time and had a catheter.  they came in ever day and washed all around the catheter and the head of my penis.  When I was at home.  I also wash myself everyday  UTI's are no fun had enought of them..Take care all and good health Ken

Hi, Jim,

Good news! The Speedicath FR14s came today. OMG! What an improvement! I hardly have any pain with them, and my cathing time is about 1/10th of what it's been.

A big part of my problem this past week was due to the Speedicath FR16s having a manufacturing defect, which I discovered a couple of nights ago. I kept carefully checking the tips before using them and found many to have the sticky gunk on the end. The gunk would cause the catheter to stick to my urethra pushing in and pulling out, especially at the prostate area. The Coloplast rep told me I must have received a bad batch. But even the ones without the gunk were painful because they were too big for me.

Your points are well taken on dealing with professionals. Overall I think my new uro's staff is well trained--much better than my previous uro's staff. When dealing with doctors, I always try to remember that 50% of them did not graduate in the top half of their class. And when dealing with doctors, I also remember that many are in the medical business to make money--and it IS a business.

My last uro presented me with 2 treatment options and told me those were the only 2 options I had. Then he tried to use a sales technique called the "silent close". I used to work in sales, so I knew exactly what he was doing--and it kind of p*ssed me off. If you don't know what a silent close is, it's when a salesperson makes his presentation and then stops talking. The customer typically feels uncomfortable with the silence and starts talking--and sometimes talks himself into buying the product or service. Needless to say, I sat quitely until he broke the silence. Then I told him I had more research to do.

Stebrunner

Hi Stebrunner,

Sounds you have found the light at the end of the tunnel, which turned out to be the right sized catheter!

The spasms you were having were no doubt caused at least in part by your medical team suggesting the wrong catheter size. Hopefully, no more spasms, but if they come back and become a real problem please speak up to your nurse as you did this time and insist some anticholinergic medication. 

Moving ahead, make sure you have plenty of extra catheters on hand. Take into account delayed shpping times as well as the fact that you may have to throw some away because of failed attempts, contamination (you drop one), etc. 

FR14 is a pretty good size for most and in fact I'm using that right now because I opened the 14 box by mistake instead of the 12. That said, ask the rep to send you some samples of the 12. You might even like them better but if not, no harm in trying. They won't hurt you at all like the 18's or the 16's. Worst case they will be difficult to get past the prostate (they are more flexible so they might bend) and if that happens you just pull them out. (I always give a little twist when hitting resistance and if you look online that technique is also recommended by credible sources.)

Curious,  many times a day they tell you to cath? 

Jim

Hey, Jim,

My uro wants me to cath 4 to 6 times a day. I've been very consistent at 5 times. When I'm having difficulty cathing, I cut it back to 4, sometimes even 3. Today or tomorrow I am to start keeping a log. Have a meeting with my uro a week from Monday, and he wants an idea of how things are going.

Last night I went to a party and ate some food that may have irritated my prostate. Paid the price for that this morning as I couldn't complete a cath with the Speedicath FR14 or LoFric Origo FR14. Ended up using the Self-Cath FR18 and slowly pushed it through. It seemed to take forever! Now it's later in the day, and I'm able to CIC with the FR14s again.

Right now my prefered catheter is the LoFric Origo FR14. I find it more comfortable, and it seems to pass my problem areas with more more ease. I don't like the sleeve-guide LoFric provides with it, so I remove the guide and use your method of holding the funnel to guide the catheter in.

From your description of the Speedicath FR12, it sounds like the Origo FR14 is probably similar, or I should say it sounds like they might have the same flexibility. I'll try to get some FR12s to see how they work. I plan to keep some of the Self-Cath FR18s or 16s around in case I have days when my prostate is inflamed.

Stebrunner

4-6 times a day is the standard advice given. Not sure if urologists just want to keep it simple, or if they are only somewhat versed in the process. My experience with several uro's is the latter, and in fact they have admitted that self-catheriztion is not a major part of their practice. In most cases, CIC is just a stop gap measure to them, or something a patient insists on. What most urologists do when the watch an wait turns into stop waiting is turn to surgery. 

So while 4-6 times is standard, if you're going to do it, do it right. Start keeping a log. You don't want to cath more than you need to, and you don't want to cath less. The 4-6 again is a *general* recommendation, the log will give you a plan tailored to you.

Glad that you're finding the catheter(s) that work for you. Experimentation is the key and it seems you are doing that. A lot of us here strongly recommend one catheter over the other, but that doesn't necessarily mean it will be the best catheter for your anatomy. Especially with the coude tips. All coude tips are not shaped the same way. So far, only Coloplast's Speedicath has a coude tip that I can tolerate well. But for someone else, with a different prostate architecture, it may be another shaped tip. 

Keep up the good work and let us know how things progress.

Jim

Hi, Jim. I second your comments entirely. My "Catheter Lady" let me have an armful of sample catheters with the comment, "Catheters are like shoes. It is essential to find ones that fit well and are comfortable for you."

What I really wanted to talk to you about is the concept you put forward that CIC can become the main remedy, not just a temporary backup. I believe the proof of lies in the many paraplegics and cuadraplegics whose very lives depend on this simple artefact, the urinary catheter.

Catheterization will be part of their lives until their final day. They have no choice, unless some dramatic alternative appears out of the blue.

In my opinion, their experience proves beyond any doubt that self-catheterizing might indeed be a viable and better alternative to the remediation methods currently offered.

Warm regards,

Alan.

P.S. On May 3rd I will be undergoing Cystoscopy. I am really looking forwards to it. I'll keep you informed, if you are interested.

Hi Alan,

Your catheter lady is right, and glad she gave you an armful of samples. But using that analogy, a good shoe salesman knows in advance which shoes are more likely to fit and will therefore suggest you try them on in that order.

First, you probably want to start with FR14, as it seems to work best for many. Later, you could go down (FR12), or possibly even up depending on your experience.  Hydrophillics seem to be the way to go if you can afford them and/or the insurance company will pay for them. They simply are the most slippery which should translate into less trauma. And then there's coude tip versus no coude tip. Hopefully your doc will tell you which fits your prostate anatomy but my understanding is that for many of us here (large prostates) the coude tip is the way to go because they are designed to go around obstructions and/or strictures. Try and visualize it, a curve hitting the prostate versus a point. 

I tried on a whole lot of shoes, from red rubber, to vinyl, to hydrophillics with different kind of coude tips. Ended up with Coloplast's Speedicath FR 14 and then later FR12.  Both work for me but the FR14 might be easier to use in the very beginning until you get your technique down.

As to "main remedy vs temporary back up" yes the SCI (spinal chord injury) community uses them as their "go to" remedy. So lots of data there on long term use. Now keep in mind that their issues could be a little different than ours. From my reading, I think their incidence of UTI's might be a little higher. My guess is because they have zero "feel" for the catheter going in and without that valuable feedback, there could be more trauma than someone who does CIC with constant feedback. 

So why don't more urologists suggest CIC beyond a temporary backup or stop gap? To give them the benefit of the doubt I believe many think that the operations they offer provide a better quality of life for bph sufferers, with a permanent fix.

Of course, the fact is that they are putting their kids through college with whatever operation they offer and CIC of course can't do that. Also, they tend to minimize the side effects of their operations. Some don't even mention retrograde ejaculation, others say 'it's no big deal". Some of us here sharply disagree. 

Right now I'm pretty content with CIC, and if I had to continue it forever, no big deal, just like I will continue brushing my teeth forever. That said, if a newer operation or procedure came along that was non-invasive and without sexual side effects I would be open to it. 

Right now, PAE seems the closest but not everyone has the good result, so I personally am waiting on that. There is another procedure someone recently posted on that utilizes MRI guided vaporization. Only problem is that it's very, very new, not much in the way of studies, and only one doctor seems to do it. That doesn't fit my comfort zone even close. 

Good luck with the cystoscopy (I assume it's a flexible and not rigid?) and definitely keep us informed.

Jim

Hi, Jim,

Thought I'd give you a quick update. Been keeping a log this past week. My highest void 400 ml and lowest 50 ml. On average, CICing 5 times a day, my cathed void is 125-175. Total output for a day is between 9,000  and 1,100 ml. Haven't been logging fluid intake. Haven't been voiding much naturally. Typically that's been about 20 to 30 m.

Just as you predicted, CIC is becoming easier! The right size catheter helps, and I've also been learning to read my body. There are times when CIC is difficult--when my prostate is inflamed--and it can take an hour or more to complete a cath. But most times now I can be done in 8 minutes. Seems to be getting faster as I go along. I did CIC away from home for the first time last week, and it went much better than expected.

BTW, thank you for your review of the Speedicath Compact. Once I get CICing mastered, I want to try that out.

Met with my urologist today. We talked about getting my bladder stones out. They need to come out because they can cause infections, bleeding and other problems, and I need to have them taken out before going ahead with PAE. Because of my prostate size and because I have a large median lobe pressing into the bladder, it will be done as an inpatient operation at a local hospital. The uro has concerns about excessive bleeding--will give me Finastride or Avodart before the procedure. If there is excessive bleeding, he told me he may have to do an emergency TURP. He also said I'll probably have to have a Foley catheter for a while afterward.

And of couse he threw some shade on PAE, telling me it's an experimental procedure. Of the 5 uros I've seen, 4 have said I will never urinate on my own again--and in the next breath, tell me that the procedure they want to do will give me a chance of urinating on my own. This behavior makes me crazy. It feels like they are preying on my desire to urinate like I once did to get me to sign up for their surgery.

He didn't seem keen on doing the bladder stone removal as a stand alone procedure. He said most men in my situation have the stones taken out as part of another BPH surgery. Now do take the risk of the bladder stone removal--and follow up with PAE? Or do I opt for the HoLEP and have the stones removed at the same time? It's a tough one.

Stebrunner 

Bladder stone removal is beyond my pay grade but the concept of an emergency TURP during bladder stone removal surgery sounds like something you may want to get a second opinion on. Perhaps there is a less invasive way to do the removal that your doctor doesn't practice? 

As far as the "Compact" is concerned, not sure it's a good idea if you really need a Coude. It worked for me once, but the second time no go. 

Also think your self catheter times are too long, even 8 minutes. Minus the prep, mine takes about four seconds to get in to start draining. I wonder if they can run an ultrasound on you while you're cathing to see what is going on?

Another option is the subrapubic catheter that goes directly into the bladder and bypasses the urethra. You can get it with a flip valve, so no bag necessary to haul around. Not saying you shouldn't cath, but on the other hand too much trauma is not good, and "an hour or more to complete a cath" sounds too traumatic to me. How much experience does your uro have with self catherization? Some of them don't have much. 

Jim

This is getting on my last nerve.  Take the stone out of the bladder and leave the da..Prostate alone....That all I have to say  Ken 

Hi, Jim,

Thanks for your concern over my CIC times. This week things have been going even better, and my time now is down to 5 minutes. I expect as I gain more experience that my CIC time will be less. I'm ok with 5 minutes. Believe me, that's far better than a Foley catheter any day. There are times my prostate seems a bit inflamed, and then it takes more time to finesse my way through the first sphincter.

My new uro probably isn't the most knowledgeable with CIC. He did a good job of explaining some of my mystery pains. His staff has done a wonderful job of training, even though I differed with them over catheter size. I suspect my uro thought I'd soon tire of CIC and ask for one of his surgeries.

Oh, and he told me my CIC log was pretty much useless because I void so little on my own. I didn't tell him I'm following your bladder rehabilitation plan--keeping my urine volume low to give my bladder a rest. I think I need to keep my CIC schedule at 5 times per day for now.

I hope over time my natural void amount will increase.

Found out some hopeful news today while talking with an interventional radiologist. He suggested taking my bladder stones out after PAE, rather then before as is usually done. The PAE would reduce the size of the median lobe that's pressing into my bladder, making bladder stone easier and with fewer complications. I sent my CT-scan to him today. Hope ot find out next week if that will be an option.

Bummer about the Speedicath Compact. I'm pretty sure I need a coude tip, but hoped the FR12 tip of the Compact would allow it to work. When I cathed away from home last week, I folded the LoFric Origo and left it a couple of hours before using it. (I also took an unfolded one along as a backup.) When I went to use it, it was a bit wonky and bent, but I got it to work anyway.

Stebrunner 

Glad your times are going down. As long as you're not bleeding excessively or having too many UTI's, hopefully all is OK.

As to your doc's take on a CIC log, that sort of confirms he doesn't know too much about CIC. He seems to think that a log is only meaningful  to track natural voids and misses the whole point about the 400cc guideline, i.e if you cath more than 400cc then cath more often.

It's not my guideline but CIC 101 and any web search will confirm it. My "twist", if you want to call that, is to cath even more often so that the total bladder volume is even less than the 400cc guideline so as to give the bladder even more chance to rest and decompress. That said, at this point. I would think that for you the standard 400cc guideline is what you should shoot for to keep your cath frequency to around th standard of

4-6 per day. 

Given your resistance going around the prostate with the Coude, I personally wouldn't even bother trying the Compact because you really don't want to poke around too much with a straight tip. I'm pretty good at this by now, and on my second attempt with the Compact couldn't get through, so just backed it out and called it a day. Like I mentioned, they may come out with a coude version later this year. That said, we all have different anatomies, so who knows, but unless it just slips in and feels easier than what you're using now, I would abort, because you don't want to go jabbing the prostate or creating a false passage.

Jim

Hi, Jim,

Thought I'd give you an update. Can't believe I've been CICing successfully for 2 months now! Thanks to you and the guys on this thread!

Over the past month my natural void amounts have increased from 10 to 20 ml to an average now of 50 to 60 ml. I'll be having my PAE done in Denver in about a month. The radiologist thinks he can reduce my median lobe, which will make it easier for the urologist to remove my bladder stones. I just hope the stones don't cause any problems before then.

I've been taking the Lofric Origos with me away from home, folding them and carrying them in my backpack. Sometimes when I go to unfold them, they are very warped. And those I don't use because I think they might cause a problem. Do you think I should go ahead and use them? I also thought about carrying extra catheters (unfolded) in my car. Will they be ok in the heat or cold?

Thanks again for all your help with CICing!

Stebrunner

Hey Buddy.  This is just a heads up. Don't know if your urologist told you that if he has a problem removeing the stones he will automatically do a turp When you sign the papers for surgery he can do anything he wants.  To play it safe I would have him sign a paper that he is only to remove the stones and nothing else is to be done..I did it when I had surgery from another urologist that was not mine.  Take care  Ken   

Thanks for the update. Glad things are working out better! The increase in natural voids are also promising. My natural voids were in the 100cc range in the beginning and now often 250-400 per void with a 500cc void a couple of weeks ago!  Reducing your median lobe should also making self cathing a lot easier if it's still needed after the operation. It will also be a fast and easy way to check on post operative PVR's, instead of having to get it checked via ultrasound at the doctor. 

I hardly even self cath during the day lately, but in the past I used to carry around my Speedicath's in one of those cardboard tubes you can get at a place like Staples. They were a little longer than I needed so I just cut them down to size with a razor knife. They have a cap at one end so makes a very handy container that keeps them from bending. Fits right into a backpack. For me this was preferable to using a warped up catheter that had been folded. Good question about heat and cold. I can't see why the heat would be a problem but maybe extreme cold might affect the fluid, just don't know. The customer service is pretty good over at Coloplast so maybe call and ask them and if you do please report back.

Jim

Hi, Jim,

I called Lofric today and asked about keeping catheters in my car during hot or cold weather. The CS rep told me there should be no problem--just to let them get to room temperature before using.

Haven't checked void amounts, but I know they are increasing. I've been having some difficulty CICing this past week, then suddenly twice today I peed a stream. The streams were much stronger and lasted longer than  ones I peed 2 months ago. Afterward my urethra was sore, but I am hopeful that bladder is getting stronger.

Stebrunner 

That's very encouraging that your stream is increasing, a sign that your bladder is regaining some of its lost elasticity and getting stronger.  Did you self catherize right after you voided naturally? Maybe that's why your urethra was sore. Maybe time to start checking void amounts to get a quantitative idea what is going on.

Jim

Hi, Jim,

I'm now almost 3 months post PAE, and I'm glad I went with that procedure. It's made CIC much more comfortable--and easier. I'm now peeing weak streams with greater frequency. Had one about a week ago that was like pre BPH days!

I'm CICing 5 times a day. Before each time I naturally void, and I also naturally void inbetween cathings when I feel the urge. My NVs range from 50 to 100 ml, usally 100 ml right before I CIC. This has not increased in the past month (the doc told me most of my improvements would occur in the first 4 months post PAE--and I have one month to go.)

I'm wondering if this plateau is due to bladder stones? Or lack of bladder tone? Been CICing for over 6 months now, and I try to keep total voids under 400 ml.

I've also notice that when I naturally void it often takes a few seconds to get a stream going. Again, is this a bladder stone or bladder tone issue? Your thoughts?

Once I get past the 4-month mark past PAE, I plan to have the bladder stones removed. If it takes more time to rehab my bladder I'm ok with it. I certainly don't want to try to pass a stone when my bladder is weak!

Stebrunner

Hi Stebrunner,

I read your post with much interest. I also had a PAE about 6 weeks ago now but have had no improvement in my peeing. Thanks to jimjames I learned to self cath about a month before my PAE but still need to self cath now so I am very disappointed. Where did you get your done and how big was your prostate? Do you have a median lobe? Mine is 300gm but no median lobe. Do you know for sure you have bladder stones? I have the same start/stop problem too but was told from an U/S there are no stones. My PAE was done at UNC Chapel Hill. Thanks. Neil

Hi, Neil,

For the first 6 weeks after my PAE I noticed no improvement, and CIC got a lot worse because of my prostate swelling from the procedure and from a nasty UTI. Then going into weeks 7 and 8, I started to see things get better, so don't give up hope yet.

My PAE was done by Dr. Charles Nutting with RIA Endovascular in Denver, CO, and I feel he and his team did a great job. My prostate was 90cc with a large mis-shapened median lobe pressing into the wall of my bladder.

Last December I experienced acute urinary retention for the first time. At first the docs didn't know what was wrong because I was still peeing pretty much as normal. Then a CT-scan revealed the problem, and they drained 7 liters out of my bladder! The scan also showed I have several bladder stones, the largest being 2 cm. A cystoscopy also confirmed the presence of stones.

Over the past 8 months I've seen 5 urologists, and 4 said I would never regain bladder function again due to my extreme retention. They also said I may have a slight chance of regaining it if I would allow them to do one of their surgeries--suprapubic prostatecomy, TURP or HoLEP. In my research, I found this forum and learned about PAE, which is the procedure I chose. My goal was to make CIC easier--and to stop my prostate from growning even more large. The fact that I can pee some on my own now is icing on the cake.

The progress I've made since PAE has not been a steady, consistent path upward. It seems I progress--then hit a plateau for a while. Then suddenly make a jump in progress to another plateau. Dr. Nutting said I'd experience most of my prostate shrinkage in the first 4 months so I have another month to go. I am still hoping to see more progress.

As I recall, Jimjames said it took about a year for him to rehabilitate his bladder using CIC. I've been doing CIC now for about 6 months. The prostate restricting my urethra is one issue--my poor bladder tone is another. BTW, a urologist gave me a Urodynamics test after my big retention, and I completely failed it so the progress I've made through CIC and PAE has been amazing!

Don't give up hope on the results of your PAE. I know in my research I read a lot about men who experienced fantastic results in a matter of days so I felt disheartened at 6 weeks, especially when it seemed that CIC had become even more difficult. It could be that your PAE is taking more time due to the architecture of your prostate.

Stebrunner

All of these situations are complex and obviously vary by individual. I say down the road don't rule out HOLEP.

I had sudden stop of ability to urinate March 28th. After increasing pain, trip to ER took out 2.2 liters and later performance of Urodynamics test said my bladder was exerting zero pressure. I choose CIC and was told I'd probably need to do for the rest of my life (now 78 and otherwise healthy). Luckily some where along the way I found this forum and heard about HOLEP.

After much research and discussion I choose to have HOLEP and it was done at VA Hospital in Milwaukee in mid August. I know it sounds scary, but was virtually painless. I was immediately able to pee on my own. Some blood in urine for first week or so and getting stronger over time.

Did CIC every now and then in first weeks to see if had any excessive retention. Haven't done that for several weeks now and have been cleared by my Surgeon to return to all normal activities. Bike riding is a favorite of mine. I pee on my own now on a regular schedule and am overjoyed with the outcome of the surgery.

Keep an open mind to HOLEP if your other pathways don't give you desired results. Jim H

Hi Stebrunner, Thanks for your response and your words of encouragement. Are you planning to do anything about your bladder stones? I am resigned to doing CIC for the foreseeable future and see how it works or maybe do another PAE in the spring if there is reason to think it might work. Jim123 writes about Holep as an option but the doctor in Arizona who does it said I am too big but maybe PAE will shrink it. Thanks again and all the best. Neil

Hi Jim - thanks for your post and words of encouragement. How big was your prostate? Also  did you have any incontinence issues after Holep? My prostate is just too big for Holep (300gm) but maybe my PAE will shrink it down. I am really happy for you good results and hope they continue. Take care. Neil

Neil,

I don't know the size of my prostate before but big enough to restrict/prevent flow from weakened bladder.

I have had no problems with incontinence but I did read in places and was told before surgery that it was a potential negative.

All the best to you, Jim

Hi, Neil,

Since you have a really large prostate, I imagine it limits your treatment options. Does it cause any problems when you CIC? I've heard of other men on this forum who've had PAE done twice, but haven't heard their results from the second one.

I'm researching what my options are for bladder stone removal. Typically those are taken out before PAE. Because my prostate is pushing into my bladder, my urologist said there could be excessive bleeding if the surgical equipment nicks it during the procedure. He went on to say that if that happened, he would do an emergency, partial TURP--which I definitely don't want.

Dr. Nutting and I decided to do the PAE first in hopes that the prostate will shrink away from my bladder enough to make stone removal easier. That's why I'm waiting for another month or so before taking action. I'm only 3 months post PAE and should see more improvement.

Before chosing PAE, I did consult with Dr. Humphreys with the Mayo Clinic in Arizona about the HoLEP procedure. I decided it could be a backup option for me. Of the traditional prostate surgeries done by urologists, I figure it's the best for my situation.

For most men, it seems that peeing like they used to do is their top priority. In my situation, having had extreme AUR, the odds weren't in my favor of that happening, and I made peace with the idea of CICing for the rest of my life. My top priority is to maintain sexual function, followed by avoiding incontinence.

The uros I've dealt with have tried to sell me on their surgeries, thinking I'll do anything to pee like before. When I pressed them on the odds of their surgery making that happen, they suddenly started back peddling. They also downplayed the possible side effects of their surgeries. One reason I liked PAE is that it has few side effects and it leaves my options open. If it doesn't work, you can try another procedure. If I went with what my uros recommended, I was pretty much stuck with it.

Don't get me wrong, I'd love to be able to pee like I used to do. But it would also be great if I could reduce the number of CICS from 5 per day to 2. It's been amazing to make as much progress as I've made so far. I understand why many men fear CIC, but CIC can allow you time to research treatment options. I never thought I could do CIC, but Jimjames and other guys on this forum really helped me succeed.

Stebrunner

Hi Stebrunner,

Happy to hear what sounds to me like positive news! 

My hunch is that the "4 month" improvement "plateau" has more to do with his operation and not with bladder rehab. In my case I was told that I could not expect any improvement after six months or so from CIC, yet my greatest improvements were after the 12 month mark! Most urologists (and I don't believe PAE docs are even urologists) know their operations but don't really know much about CIC and bladder rehabilitation. 

Of course there are no guarantees your bladder will progress more, but I certainly would not give up the plan or worry about a 4 month plateau. 

When you say you "keep total voids under 400cc", are you defining total void as the total of your natural void plus your CIC void? Or just what comes out when you catherize? I used the former computation whenever I could, and when I had the time would throw in an extra catherization here and there to give my bladder even more of a vacation by decompressing it. You're at five times day, maybe try six times if not too inconvenient.

No opinion on the bladder stone issue but some hesitation is pretty normal given your history whether you have bladder stones or not. 

Jim

Just want to add to Stebrunner's comments. I was also told by several urologists that I would never regain anything near normal bladder function due to my flaccid (stretched) bladder. I was also told any marginal improvement in tone would end at about the six month mark but forget about normal post void residuals or throwing away the catheters. 

Well, after about 18 months on a fairly agressive self cath routine as described elsewhere, they turned out to be wrong on both counts. Not only did I start getting normal PVR's (down to under 50cc) but I was able to stop cathing sometimes for months at a time. 

Today, I only cath when I need to which could be anywhere from twice a day to twice a week or even less. It mostly depends on my fluid level, how diligent I am with natural voids, and things like the kind of exercise I do and even whether or not I nap in the afternoon. But the point is that overall things work very normal and in fact much better than they did since my late 30's! So much so that while I try and keep abreast of the newer procedures and operations not sure why I would ever want one unless I was guaranteed a better outcome with zero chance of side effects or regression. Don't think that will happen soon

Jim

Hi, Jim,

Yep, my total voids are a combination of my natural void and my cathed void. For example on my 4th CIC yesterday my NV was 50ml and my CV was 125ml for a total of 175ml. Usually my first total void of the day is over 400ml. Typically I wake up 2 times during the night and naturally void.

Stebrunner

Hi Jim - thanks for your response. You have been a real lifesave for me and many others by taking so much of your time to educate us about CIC as an alternative to the uro operating table.

Just wanted to mention that there a couple of new treatments on the horizon that might meet your criteria (and mine) of no risks. Both are in phase trials now. One is being developed by Sophiris and is a once-a-year into the prostate that induces cell death of hyperplasia cells (it is activated by PSA) so it reduces the prostate volume. The other one is also a prostate injection once a year that shrinks the prostate but I don't recall the mechanism. So maybe if we keep our bladders/kidneys healthy for the next few years by CIC then some new treatments might fix our BPH  w/o surgery.

Take care.

Neil

Jim  I'm glad it worked for you Men can pick any procedure then want but some men do not want the side effect of the coreing out or cuting out or lasering of the prostate.  At your age you may not worry abouy retro but men at 40 to 60 may not be able to handal it.  At 61 I am not giving up anything just to pee like a teenager Take care and enjoy your life  Ken

Good comments. Each of us has to decide what's best for our age, personal situation, etc.

Hi Stebrunner,

I think we have both been down the same road - almost identical in fact - and I have formed the same conclusions as you thanks to help from jimjames who also showed me that there is a better way to manage our BPH through CIC and take control away from the uros and the IRs I would now add since my PAE after 6 weeks has had no impact on my BPH. jimjames writes how he hopes in the future there will be new methods to deal with BPH that have no side effects. There are in fact clinical trials on two such treatments that involve annual injections into the prostate to shrink it and these are very promising. (I tried to discuss them below for jimjames but the moderator I guess did not like my naming the companies). Anyway, the probelms with these injections after a year is that the placebo control group is doing just as well with major reductions in symptoms so the trials have been extended another year. Maybe we should all just get placebo injections to cure our BPH symptoms!

I  or not done. I did have trouble initially with CIC due to my large prostate though I have no median lobe. With jimjames help I learned about coude tips and that really helped. Also I increased the size from 12 to 14 which helped too.

On Monday I return to UNC Chapel Hill for a 3T-MRI to see what the PAE has done. I hope they don't see "suspicious areas" that will scare me about PCa and require targeted biopsies just to confirm that in fact it was dead tissue/scaring from the PAE!

WE are both on the same wave length and plans so lets keep in touch.

All the best to you and jimjames.

Neil

Hi Neil,

Thanks for the nice words and the heads up on newer less invasive bph treatments. That's what I came here looking for in the first place. 

Both of the treatments you mention sound promising. Right now, CIC has an inconvenience factor of almost zero so haven't been too motivated to seek other options.

That could change however if I had to increase my CIC frequency. Right now I pretty much only do it once or twice in the evening, and maybe only a few days a week depending on a host of factors including diet, exercise, fluid intake, sleep patterns, etc. I always leave the house without catheters and only once this past year did I have to hurry home to catherize. 

The biggest inconvenience with CIC for me has been travel in that I have to make sure I pack enough to cover any contingencies. Haven't been traveling very much lately so really not an issue but if I did start to travel more it would be nice not to have to bring them along. 

Jim

Hi, Neil,

Curious as to what your 3T-MRI showed about your PAE results so far. And curious as to why you chose that scan. Did your doctor recommend it?

My insurance company told me last week that they are dropping my plan. They recommended another plan--which is basically the old plan but greatly restricts access out-of-network doctors. For this new "privilege" my premiums go up 24%. Need to talk to my insurance agent about new plans, but can't until next week.

Right now I'm thinking I need to get my bladder stones out before the end of the year, when my insurance plan changes. A urologist wants me to have another CT scan done to see what's going on with my median lobe and the stones. Not sure a CT scan is the best test to take for that.

Hope you are seeing some improvement from your PAE.

Stebrunner

Hi stebrunner,

I went back to UNC last Sund for a Mon morning MRI but their new 3T-MRI wide bore would not boot up! So they offered me their conventional 1.5T MRI instead but I am very claustrophobic and could not do it so I returned home a thousand dollars poorer and with no scan.

The idea for an MRI was mine to see why I still have had no response from the PAE after 7 weeks now. The doctor said to wait  months for results but self-cathing is no fun so I just wanted to know if there was any necrosis and it was working so i should just be patient.

The 3T-MRI gives very good resolution and is also used for detecting prostate cancer and it comes in a wider opening for people with phobias like me. But the doctor did say that a 1.5T MRI would also work for detecting any success with the PAE but they are all narrow openings.

I think CT scans and even ultrasounds can be used for seeing bladder stones and obstructions but for seeing the soft tissue around the prostate and blood vessels the MRI is best.

Anyway I guess it is back to self-cathing for the foreseeable future but I might try another PAE maybe with Dr. Bagla. I do have another 3T-MRI appointment now for the end of October in Detroit which is much closer. Also my wife will come with me so I will take adavan before the scan. I am also building a mock-up of the MRI tunnerl and will practice going in and out of it here at home. It was very humiliating for me.

I am sorry to hear about your insurance issues. I fully expect to have the same problem with mine too. So this is why I am trying to fit in all the diagnostics now so I will definite course of action for my prostate problems when the insurance degrades. I hope it will still cover the Speedicaths. Good luck. Neil

Hi, Neil,

Did you have your MRI done? Are you thinking of having another procedure done? I just got the results back from my CT-scan late this afternoon. The scan showed I still have a markedly large prostate, bladder stones, and now, a kidney stone. My median lobe is still pressing into the wall of my bladder.

Yet, with that news, I find I've made more progress from my PAE in the past month. My CIC times are much less. My natural void volumes are gradually increasing. I happy with the progress I've made.

I meet with my local urologist in the mid Novemeber to talk about my stone removal. I know he's going to press me on reducing the median lobe--as will the uro at the Mayo Clinic. At this point, I just want the stones out. I don't want any TURPs or HoLEP surgeries.

CICing is a breeze now, and I want to wait until there is a new procedure that won't mess with my sexual function--and on that is low on other side effects.

Stebrunner

Hi, Jim,

Thought I'd give you a quick update. I'm now 4 months out from my PAE. My progress has not been linear--just this past 2 weeks I suddenly dropped my CIC time another 23%. My NVs are gradually increasing--and more consistent. The PAE has done what I hoped, given my challenges. I now cath 5 or 6 times a day, trying to keep it at 6. My largest CV is my first cath of the day, and my TV is usually over 400 ml. After that it drops below 400. Time will tell if I can rehab my bladder as you did yours.

My PAE opened my urethra up enough that I can now use Speedicath FR 12s. I still use LoFric Origos about half the time--and those are FR 14s. CIC times are about the same--the FR 12 goes in faster but takes longer to drain.

Last week I had a CT-scan done in preparation of my bladder stone removal.  It shows I still have a markedly large prostate, and the median lobe is still pressing into the wall of my bladder. I know the uros will pressure me to let them do a TURP or HoLEP. It will be a battle I'm sure.

I want to follow your lead and continue with CIC until a procedure comes along that I like. CIC isn't that bad once you master it. My last UTI was 4 months ago right after my PAE. I finished up the antibiotics they gave me and started taking the supplement D-Mannose. The supplement and good hygene habits for CIC are helping reduce my UTIs.

Stebrunner

Hey Buddy.  Are you planning on having the bladder stones and the kidney stones done.  I would not let him near my prostate.  You know that if he goes through the urethra he is going to mess up your prostate and tell you that he could not get the stones out unless he remove the median lobe.  He has a right to do anything to you when you sign for surgery without telling you.  I would have laparoscopic this way he is no where near the prostate. I'm not saying that your doctor would do that but I have read a few post on here that it has happen to some of the men.  They go in for one procedure and then the doctor does another.  Not what they wanted but what the doctor wanted.  Why take the chance your doing good.  You don't want him messing you up.  You want to keep your sexual functions   Take care  Ken

Hi Stebrunner,

Glad to see things are getting better! I think you're on the right track not going for an invasive surgery like TURP or HoLep. Many of the docs will tend to pressure you on this because this is what they do. The good ones should respect your decision, especially since your CIC program empties your bladder as well as ANY operation and therefore protects your kidneys as well.  If the docs become unreasonable, find one that will work with you, but at all times trust your research and instincts and don't get swayed by their authoritarian tone. 

Not unusual that your morning TV is over 400ml. I'm guessing that you are either sleeping through the night or only getting up once or twice? Do  you know how much your morning TV averages?

Regarding UTI's. UTI's are not as clear cut both as we get older and especially if we self cath. With younger, healthier men with normal prostates, antibiotics are often started based on symptons even before a culture comes back. But as we get older, and/or if we cath, it's not so clear cut.

The guidelines for people who self cath are only to treat *symptomatic* UTI's, and not treat if no real symptons. What that means is even if a urinalysis and/or culture comes back positive, in most cases antibiotics should not be taken unless you have symptons.

Unfortunately, "symptons" can get a little subjective. Of course, if it's buring like h*ll when you urinate and/or you have a fever, then it's a no brainer, you take antibiotics. However, if the urine is just a bit discolored from blood, and/or it smells not so good, that in itself is not considered symptomatic enough to treat with antibiotics. Even a little urgency or a little bladder discomfort is not enough. 

About three weeks ago my urine turned darker than normal (hematuria) plus was very cloudy and had an odor. When I did my home dipstick urinalysis (same one most docs uses) not surprisingly it came out positive for leukocytes and blood. It also came out positive for nitrities, the latter which almost always confirms a UTI. 

I also had some bladder discomfort and urgency but not really bad. Well, I knew if I showed up at the local doc in the box (I'm between urologists now) they would hand me either Cipro or Macrobid even before a culture, but I sort of tossed a coin in my head and decided to wait it out a little because you really don't want to use antibiotics too often unless necessary. 

Increased my fluid intake, starting cathing (I hadn't for several weeks) even though I didn't have to with the idea of fully emptying the bladder several times a day to inhibit bacteria growth, and lately started drinking orange juice which some studies suggest makes the urine more alkaline and therefore less hospitable to bacteria. Also took xtra tums which also alkalize urine. 

Not sure what worked, or just time, but within a week the odor went away, and two days ago the nitrites returned to normal. Urine also much clearer. 

Not saying for folks out there should not treat their uti's with antibiotics, or not consult with a doctor, but just putting out some concepts from the medical literature and my own personal experience. Again, asymptomatic uti's are usually not treated for a self cathing patient even though urinalysis

and culture are positive. And also, that a mild uti can often resolve by itself without antibiotics. Of course, the ideal, and my recommendation, is to always inform your doc or uroloigst exactly what you're doing. 

Jim

Hi stebrunner,

I had my 3T-MRI yesterday  so I should get the report early next week. I am 13 weeks now post-PAE with no change at all. I  have an appointment with a new uro in 10 weeks that I hear is pro CIC but he is also the main GLL guy.  He does urodynamics test on new patients. I already told his nurse I am only coming for a consult - nothing more - otherwise cancel the visit. CIC is the way to go but you need to get rid of those stones - maybe laprascope as Glenn suggests. Thanks for asking and all he best. Neil

Hi Jim, I'm learnig how to self cath. I was told that the lower cc after cath is the best. I don't understand that,it was never explained. Why is that better? I still have rentention,uro wants to do turp? At my age i'm not comfortable with this. I want to learn all i can about cic.

thanks for all this great info?Do you think it's best to hold back on self cath for at least 4 to 5 hours? I have the urge every 3 hours?

Hi Frank,

What do you mean by "the lower cc". Not following you here.

As to frequency, the general rule is that if you cath out more than 400ml, you should increase the frequency. Do you know how much you're cathing out? If not, get a plastic measuring cup at the supermarket and start a log, it will be helpful. Meanwhile, I see no harm cathing every three hours as long as it doesn't end up being more than 6x in a 24 hour period, but definitely measure what is coming out both from your natural void (if you are able to naturally void) and your catheter volume. 

As to TURP, in most cases self cathing can replace any operation or procedure as it empties your bladder completely therefore helping many bph symptons while protecting your bladder and kidneys. If you decide not to continue with self cathing there are less invasive procedures than TURP. Problem is that your doc may only do TURP so that would mean getting consults elsewhere.

Keep in mind this is all very general advice and may or may not fit your situation. 

Jim

Jim

Hi Jim ,The lower cc ,meaning the same as amount in ml,.My measuring cup says amount of volume in cc.and the other side tells amount in ounces.

i am cathing 6 times a-day.and i do keep data. Do you think this matters,My urine out put is more than my imput of liquids?Why would it be a problem if if cathmore than 6 times in 24 hours? I  don't have a natural void,i have rentention.The Uro i have doesn't think the Avordat medicine is going to work for me.I don't know why ,it's supposed to take 6 momths to shrink the prostate. Have you had experirnce with medicine?

Thanks,for all your info.

Hi Frank,

Are you able to void/urinate by yourself at all, or are you only able to void with the catheter?

Jim

HI JIM Only able to void when i self cath> Do you think this will take me out of retention?I still take Avordart and flomax??

Thanks My friend for all the info you have giving me>

Hi Frank,

I will try and answer your questions. 

1. Sometimes it can seem like your 24 hour urine output is more than your fluid input but if you tracked it for a longer period of time you would probably find the opposite or that they are even. Different factors can contribute to lower outputs including diet and sodium intake.

2. The literature recommends no more than 6x/day but not really a hard and fast rule. Rule of thumb is that if your cath volume is more than 400ml on average then increase the frequency. If it's less you can decrease the frequency. I don't see any great harm in cathing 7 times a day if you need it. I did from time to time.

3. If your urologist doesn't think the Avodart will work then consider not taking it. I'm not a big fan of the drug myself.

4. Since the Flomax isn't helping you naturally urinate I would stop that now as well. You really don't need Flomax anyway to empty your bladder since you are doing that by  self cathing. Later, you might try the Flomax again to see if it will stimulate some natural urination but since it isn't right now doesn't make sense to have to deal with the side effects. 

5. You ask if the self cathing will take you out  of retention. The self cathing will solve/treat your retention problem in that it will protect your bladder and kidneys by completely emptying your bladder several times a day. I guess what you want to know is if you will be able to get off the catheters completely and urinate naturally? 

That really depends on lots of variables. One option to continue self cathing with the hope that it will rehabilitate your bladder to the point where you can urinate naturally without retention. This is what happened to me but it took well over a year to be able to put away the catheters. Keep in mind that there's no guarantee you will be able to put away the catheters so it could be a life long situation. Since the drugs aren't working, your other option is to have an operation. If you are a good candidate try looking into the less invasive procedures first such as PAE, Urolift and Rezum. 

Jim

Hi Frank,

I replied at length to your questions but for some reason the post is "waiting to be moderated". Hopefully it will be reviewed and re-posted soon. If not, I will try to reconstruct it. 

Jim