Self Catherization. An alternative to Turp, Greenlight, HoLEP...?
Posted , 82 users are following.
Since I posted a thread about self-catherization -- more formally called Clean Intermittent Catherization (CIC) -- there have been a few different discussions on the topic in various threads. I thought it might make sense to bring those discussions over to a dedicated thread. With that in mind, I will summarize and/or copy and paste some of what was said before into this thread for better continuity.
My story in a nutshell. 68 years old with BPH probably since my late 20’s. Watch n’Wait strategy with on-and-off trials of Tamsulosin (Flomax) with poor results. Symptoms were the normal retention issues resulting in frequent urination with incomplete emptying, urgency, and having to go to the bathroom at night in increasing frequencies. Near the end, two or three uti’s per year often accompanied by gross hematuria (bleeding).
Two years ago things got significantly worse and I couldn’t urinate on my own without physically pushing against my bladder (Crede Maneuver). That led to another trip to the urologist where ultrasound showed significant retention and hydronephrosis (water in the kidneys). I was told I needed an operation (this facility primarily did Turps) but first I had to rehabilitate my bladder because at the time it was too flaccid (stretched) for a good surgical outcome. I was given the choice of wearing a Foley Catheter for six weeks, or a program of self-catherization (CIC) in order to decompress the bladder. I chose CIC so I didn’t have to wear a Foley 24/7, and also because I felt it put me more in control.
Six weeks later my bladder was rehabilitated to the extent they could do a Turp, and the hydronephrosis was gone. After doing some research and a lot of thinking I decided to put off the Turp due to the potential of irreversible side effects, primarily retrograde ejaculation. Two years later, I am still doing CIC while waiting for newer procedures with better outcomes and fewer side effects.
I will detail my experiences with CIC in following posts -- but to summarize, once mastered, it’s a painless five minute procedure that allows you to empty your bladder completely any time you want. With CIC, I therefore have no retention issues, no urgency, and in most cases sleep 6-8 hours through the night without having to get up and go to the bathroom. No UTI’s in over 18 months. And because my bladder has been partially rehabilitated, I can urinate normally about 50% of the time without using the Crede maneuver. My IPSS Score (International Prostate Symptom Score) would be Zero (the best), albeit with a little mechanical assist. 
As of now, nothing that I have read about the various current procedures has tempted me to have an operation. That could, or could not change, in the future, but the nice thing about CIC is that you can stop it any time you want with no repercussions. The caveat is that CIC should be done under the supervision of a doctor who will monitor your BPH as required. Similar to seeing a doctor on a regular basis during a Watch n’ Wait BPH strategy.
I know many of you here have already had operations like Turp, and in most cases people seem pleased with the outcomes. CIC certainly isn’t’ for everyone, and I can understand why someone does not want to carry around a urinary “tool box” with them. On the other hand, with practice, it’s not the traumatic and scary procedure some think. I can honestly say right now that for me it’s about as traumatic as brushing my teeth.
I’m offering my experiences and thoughts on CIC for any of those who haven’t yet made up their mind on an operation. It even can make sense for those of you who don’t need an operation yet, but want to increase their IPSS quality of life score. In fact, wish I had done CIC earlier while on Watchful Waiting. Didn’t realize how much BPH had been affecting me for most of my adult life until I was able to empty my bladder completely.
CIC doesn’t have to be a permanent solution, it could just part of a waiting strategy like I’m on, until better surgical operations are developed with better outcomes and fewer permanent side effects.
For any number of reasons, the majority of urologists don’t seem to offer CIC as an alternative to surgery. My current urologist doesn’t as far as I know, but he’s OK with what I’m doing because it works for me. So, either you have to find a urologist you can convince to go along, or go to some of the major teaching hospitals where CIC is probably more in use and better understood. That is where I was taught, albeit not very well, but that is another story.
Jim
19 likes, 2092 replies
laura00828 jimjames
Posted
Thank you for your replies. Yes my father does have incontinence and retention. His incontinence started like 3 years ago.
The urologist said the cardiologist has to give him go ahead for Green Light treatment but we already see he is too high risk and fragile for such a procedure. I was hoping after all he went through with the stroke from anesthesia that his final years would be pleasant, and I feel so bad to see him with the catheter as I see he's uncomfortable.
Is it possible just to have the bladder drained at the doctor's periodically?
His cystoscopy test says the following:
Post Void Residual estimated at 600cc
The anterior urethra was inspected and was normal. The posterior uretha was inspected and was abnormal. It had moderate BPH and severe BPH. The prostatic urethra measures 6 centimeters. The bladder is abnormal with findings of increased trabeculations, diffuse erythema and bladder stones.
Do people just live with the catheter/bag and just have it changed periodically?
I looked at a self-cath video and I can't see my mom doing that for him several times a day.
Anyway--if you have any suggestion for my dad so that he wouldn't have to wear a catheter/bag all the time I'd appreciate it.
Thanks everyone.
jimjames laura00828
Posted
Ask your urologist bout a suprapubic catheter. Instead of tubing permanently in the urethra, the tube comes out of a small hole in the lower abdomen. It can then either flow into a bag or you can go bagless with flip-flo valve. With the valve, you just let the bladder full up, and then when it's full you insert a tube, turn the valve and empty the urine into a toilet of urinal. Suprapubics are generally tolerated much better than Foleys. As to having him drained periodically at the doctor's office, it depends on how often he needs it done. If it's multiple times a week, sounds impractical. Another alternative is to have a nurse come and do the catherization at home instead of your mom. But again, if it's several times a day probably impractical or very expensive. I'd look into the suprapubic. If he doesn't like it, it's easily reversible. They just pull it out and the small hole closes and heals by itself very fast.
Jim
jimjames
Posted
I've been away from the forum for several months so a quick update on my CIC progress.
For those that haven't been following my story, four years ago my bladder was pretty close
to being shot with a both a high PVR and very high IPSS (prostate sympton) score. Over time,
with CIC, I was able to rehab my bladder to the point where I had fairly normal PVRs and
and normal IPSS scores. After a couple years, I was even able to maintain this while decreasing
my CIC frequency from six times per day down to zero times a day, more recently settling on
once or twice a day when my bladder was too full.
Recently, I have developed several arrhythmias, including SVT and Afib that have effected my urine production in several ways. First, the SVT episodes often unload the kidneys quickly dumping larger than normal quantities of urine into the bladder. They have also cut down on my exercise regimen, which can help natural voids in various ways.
Because of this, I have now gone back to CIC when needed, around 4-5 times a day. The good news is that when I do have natural voids, my PVR is still very small which leads me to conclude that my bladder elasticity is still intact from CIC bladder rehab. The problem is just when my bladder is too full, it just doesn't have enough power to push the urine past the prostatic obstruction.
Has the more frequent CIC's this made me reconsider surgery? Not at all. The more I CIC, the more natural and unobtrusive it is in my daily life. I used to compare it to brushing my teeth,
and I think that's still a good analogy, except CIC doesn't take nearly as much time.
Hopefully, when I get my arrhythmia's under control, and get back to an exercise regimen, I will be able to once again cut back on my CIC frequency. But even if not so, CIC has become so easy a solution, that I can't think of any other solution that exists today with the same risk/reward ratio.
Jim
Howard31850 jimjames
Posted
Hi Jim - welcome back! My brother-in-law recently had his heart stopped and restarted to deal with his AFIB. His heart raced between 80 and 120 but now it is a steady 75. Did you try that? Great to hear from you. Howard
keith42667 jimjames
Posted
Hi Jim. I'm ecstatic that you're back on this forum. I missed your thoughtful and insightful comments on this condition. Your unselfish and well thought out posts were a Godsend to me when I really needed it. If it hadn't been for your advocacy on cic I don't know what condition I'd be in right now.
Sorry to hear about your heart problems. If there is such a thing as Karma, you should have a lot of good coming your way so I hope it mitigates your problems and your health returns. I wrote to you about two weeks ago but just as I composed it and tried to send it my internet went out so my message didn't get sent.
I'm almost at that two year mark where I've noted that you said you first started to notice improvement. My urges have gotten more pronounced and come at a lower retention amount. I always try to do an NV before I cath and can usually get out a small amount. I kind of wait until I feel the urge rather than go by the clock. The first thing in the morning I'm usually locked up and don't feel the urge at all. Then, if I just give up and do cic I might get out 250 or 300 ml. I'm not drinking as much water as many people say you should and I think that if I did, my situation might be a bit more regular. Instead I drink about three cups of strong black coffee in the A.M. Doctors say coffee can irritate the bladder so I don't know if that is complicating things. I cath between 4 to 5 times a day. 120 catheters a month is just about right for me.
I sincerely hope you get your other health problems under control. If anyone can you can.
jimjames
Posted
For those of you who have trouble getting by the prostatic (external) or into the bladder (internal sphincter), here's a tip that works for me.
When you hit the resistance point, just relax for a second and then suck in your rectum as if you're trying to hold in a fart. This is more or less doing a Kegel manuever. When I do this,
the catheter just moves right in almost as if it is sucked in! Before, I used to use a very subtle twist back and forth, but I find this works better.
Jim
george22591 jimjames
Posted
Hi Jim -
Welcome back! Thanks for the tip -- I'll give it a try. I've frequently had trouble getting past the external sphincter. The technique I've been using that has worked well for me is to back the catheter out a bit, then relax as if trying to urinate. When it feels like urine ought to be starting to flow, then advance the cath again.
George
kenneth1955 jimjames
Posted
Jim
Glad to see you back. Ken
TKM jimjames
Posted
Jim,
I tried this method it works well. I might add that after the cath gets sucked in I keep pushing with a little pressure and it completes going through.
Thanks for the tip,
Thomas
greg73359 jimjames
Posted
Welcome back Jim
I was interested in finding out if anyone has used HIPREX for UTIs. Recently I have had 4 UTIs in just a few months after a long period using CIC without many at all.
After it was recommended I checked it out on line and found many people benefitting from it. it suppresses and eliminates UTIs and unlike antibiotics can be used long term without building up resistance.
stephan80193 jimjames
Posted
Thanks I'm 68 and have the same kind of problem. I just accepted the Urinary toolkit today--kind of scary. They showed me how to do it. It didn't hurt that much. Still scared. Feel like my life has turned a corner.
Your article really helps. Does using the self-catherization help the bladder muscles? Does this mean I won't be totally dependent on the toolkit? I have some slow functionality now but I retain over 400 mls of fluid.
Thanks again.
Stephan
donald16398 jimjames
Posted
I did not know the cause of my frequent urination and leaking until i was cathed twice the same day.800 ML and 400 ML.
keith42667 donald16398
Posted
Donald - if your point is that you had no idea you were retaining that much urine and did not feel it; I can relate. At some point my urges completely went away although I think I was feeling it in other ways (nervousness, uncomfortableness, loss of appetite even). My chronic bph took a long time to come on - over a few years - but the debilitating phase happened relatively quickly. I began having overflow incontinence and started wearing depends which is something I hope I'll never have to experience again. My GP determined that my problem was prostatitis and that if he gave me antibiotics and got rid of the infection that then my prostate - which the DRE revealed wasn't terribly large; just irritated - would shrink; problem solved. The antibiotics did get rid of the infection but not the retention. Thats about the time I started doing cic and it solved all my problems for the time being. That was almost two years ago. I don't know if the loss of appetite was due to the bph and urinary retention or because of the hep c that I had contracted decades earlier and was beginning to manifest itself in several ways. I still had about a week of antibiotics to take when I started taking zepatier for the hep c. I probably should have waited to treat the hep c but the drugs were hard to get and I wanted to get them as soon as possible. With both of those problems now behind me I feel like a new man. I'm still watching to see if the newer bph treatment options become more available to me in my area and are affordable.
Happyhacker jimjames
Posted
I understand that the CRED manoeuvre is not generally recommended?
davidKran jimjames
Posted
Thanks so much, Jim.
I relate to most of your story, except that I got a bad UTI this winter and got sepsis from that. That's a dangerous condition so I got a TURP. It's been almost 5 weeks from the surgery, yet I still need CIC to get by. I still feel inflamed from the surgery and it affects my bladder and bowels and prostate and my urethra, too. Feels like I'm making no progress now and wonder if I'll ever feel better. Anyone have trouble recovering from TURP? Am I being impatient? I see my doctor in two weeks. Hope to feel better by then . . . . but I don't know. I still feel tired all the time and have to get up a few times a night to void.
Let me know, if you have something similar. Thanks. David
TKM davidKran
Posted
David,
I have not had a TURP myself so I'm not the best person to reply. What kind of TURP did you have ? Was it Green Light Laser, Holep , Bipolar, or the original TURP ? Did you have any complications during or right after the surgery ? How large is your prostate and do you have a large median lobe ? The length of time for recovery varies depending on the type of TURP you had.
Is it possible you still have a UTI or have contracted a UTI since the surgery ? You should get checked for UTI. There have been many people on this site who have had TURP or other prostate procedures and did not have a good recovery, but found out they had a UTI that was causing their problems. They cleared up the UTI and their problems went away.
You can buy, "SIEMENS MULTISTIX 10 SG" urine test strips, on Ebay, Amazon and other websites, but you should also get a definitive check by a Doctor. Also be aware that sometimes prostatitis does not show up in urine tests.
You should also post in one of the discussions about TURP especially the particular type of TURP you have had, you will get more responses.
Good Luck,
Thomas
dennis47445 davidKran
Posted
DavidKran, I had a turp almost three years ago. It was my third time. I have to cic daily, because my bladder doesnot have the strength to push the urine out of the body. I hope you eventually heal so that you are not uncomfortable, with your present situation. I think, you just need more time for your body to heal. If I were in your shoes, I would probable just take it easy, eat well, drink fluids, and juices, and hope for the best.
davidKran dennis47445
Posted
Thanks so much, Dennis. Yeah, this recovery goes up and down and is frustrating in the down times. I mainly need any kind of time. Next week to my uro for follow-up will give me more info on my progress. Take it easy, is right. Good to chat.