My Rezum Story -- Critical: ALL men should learn to self cath (CIC
Posted , 18 users are following.
So I finally had a procedure, the Rezum.
I found an excellent doctor in Chicago at Northwestern. He does both Urolift and Rezum. His name is Dr. Matias Hofer, if anyone's interested. He is also familiar with the NW doctors doing PAE. While he's my fourth Urologist, he is the FIRST one to do the cytoscopy that actually told us what the problem is. As suspected, a median lobe obstruction. My prostate is only 49 cc so he said PAE doesn't work well for that size. Because it was median lobe, he said he didn't think Urolift would work.
He said a Rezum would get good results and I agreed going forward. Just days before the procedure, I began to stop urinating normally at all for about a week so THANK GOD and the MEN ON THIS BOARD, who previously coached me through learning Self-CIC. This Uro also had no issue with prescribing catheters unlike my prior Uros.
Also, critically, he would have normally post-Rezum inserted a Foley Catheter but I asked since I was already self-cathing could I just continue to do that? He thought about it for a few seconds and said sure. So I am now recovering at home, self-cathing without having to have an uncomfortable Foley inserted.
I honestly believe every man on this board, if you're having symptoms, should learn to self-cath as an insurance policy. It may save you a trip to the ER and may prevent a Foley after whatever procedure you do have.
Back to the Rezum. I was having it done under a local. It was incredibly painful. Fortunately, it didn't last long. After I was in a lot of pain and discomfort. Mostly, a HUGE burning desire to pee despite a totally empty bladder. This pain gradually got better after an hour or two. I took the opiods and stayed on pain meds that first day. My procedure was at 2 p.m.
The next day I woke and cathed and felt 100% better. The pain is gone. I'm peeing very little naturally but I feel great. The urgency is gone. I'm self-cathing 3-4 times a day.
1 like, 35 replies
james88935 Motto
Posted
I had the Foley in for three weeks post Rezum. That time period is when the prostrate swelling is highest. It is possible that this condition may restrict the CIC effort. After three weeks the Foley was removed and I was given a quick CIC lesson and sent home with some #14's. After wearing a #24 for three weeks I didn't even feel the #14 when I tested doing it my self with the nurse there. Guess we're all different.
steven05114 Motto
Posted
Motto,
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How long post-Rezum are your now? If you are peeing just a little now, by about 4 to 6 weeks post-Rezum you should really begin to open up. In the mean time, self-cathing is the way to go. I totally agree with you that all of us with bad BPH should all learn to self-cath!
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After my Rezum at the end of November 2018, the urologist told me to keep the Foley in for 2 weeks. After over 9 months of self-cathing, I was OK with the Foley and it was never a problem. Actually, I liked being able to sleep through the night and not have to get up to self-cath over night.
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I saw 3 different urologist until I saw the one who did my Rezum and they were the first one to do a cystoscopy too which confirmed what I suspected was a median lobe obstruction causing my total blockage. This is to be expected before any BPH surgery or procedure.
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My Rezum which involved 10 injections (4 per lateral lobe and 2 in the median lobe) was painful but easily tolerated after 1 valium and 1 percocet as required by the urologist. Afterwards, I went out to lunch with my driver. I never used the remaining percocets.
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Due to moderate bladder damage that was identified in my cystoscopy, I am still self-cathing 2 times a day to completely empty as my PVR's remain over 100 ml. Hopefully, this will improve over time. It may take a few years though.
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Steve
GInAndPlatnic46 steven05114
Posted
Hi steven,
I think I have a very weak bladder and have to cic around 4/5 times a day even though I can pee naturally at times, there is not enough pressure to speak of. Do you believe the bladder can become stronger after a time or am I stuck with this situation for life.
I had turp surgery a month ago but it doesnt seem to have solved the problem of my urinary retention
steven05114 GInAndPlatnic46
Posted
Hi GeoffReev,
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You wrote: "Do you believe the bladder can become stronger after a time or am I stuck with this situation for life."
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That is the big question for all of us who's bladders were damaged by the bladder outlet obstruction (BOO). I did a comprehensive Internet search with Google Scholar on this topic and I found nothing on any studies of bladder recovery after BPH surgery. I found lots of studies on how BOO damages the bladder in humans and test rodents and rabbits.
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Before your TURP, did your urologsit do a urodynamics test on you to test your detrusor pressure? The first urologist that I saw (who only did TURP and I wanted a Rezum), said that my urodynamic test results were so bad that I should come back in 6 months and have another urodynamic test before considering surgery.
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Before your TURP, did your urologist do a cystoscopy on you to examine your bladder's condition? The third urologist that I saw (who did my Rezum), did a cystoscopy and said that my bladder had moderate trabeculation, which means that it was damaged, but after 10 months of catheters, we decided to move forward with a Rezum.
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My Rezum was successful in reducing the size of my prostate and opening up my urethra and I can pee again but I cannot completely empty so I self-cath before I go to bed. My PVR's remain over 100 ml, but the numbers are slowly dropping (I had a 95 yesterday) and my stream while good after the Rezum, seems to be getting stronger.
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This does suggest that the bladder will recover over time. I am 63 (or will be in a few days). How old are you? As we get older, we tend to recover slower which is why I am asking.
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Steve
GInAndPlatnic46 steven05114
Posted
Hi Steve 05114
I had a flow test and if that is all. It showed my flow rate on a full bladder was borderline, but I had a huge retention of urine at over 2ltrs.
That was five months ago. Since then I have been cic
five times a day up until turp surgery and now still having to self cath after surgery. I have had no cystoscopy. The National Health Service here doesnt appear to be what it was in terms of service and what to expect from it.I am 64 years of age
steven05114 GInAndPlatnic46
Posted
Hi GeoffReev,
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I take that you are in the UK? How long were you having retention? If you had 2 liters of retention and it was going on for a while, then you probably have a damaged trabeculated bladder. The cystoscopy would have confirmed that.
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What I can say is that they took 2 liters of pee out of me in mid-January 2018. I started to feel the urge to pee again (but could not) in mid-April 2018. I flunked my urodynamics test in late-July 2018. I had my cystoscopy which showed the moderate bladder trabeculation in early-November 2018 and decided to try the Rezum anyway.
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I had the Rezum in late-November 2018 and a month later and on schedule for a Rezum, I started to open up. My Rezum was successfull after the 3 months that it reduces the size of the prostate but in March 2019, my PVR's averaged 139.
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The PVR's measured by self-cathing 2 times a day have been slowly and steadily dropping. So far, by mid-July my average is 115 ml and I had my first PVR under 100 yesterday. If the trend continues, by September, my average should be below 100.
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So that is my timeline. I had a different procedure than you, but the trend does show gradual improvement which suggests bladder recovery over time. I am amazed that there are no medical studies on post-BPH surgery bladder recovery!
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Steve
GInAndPlatnic46 steven05114
Posted
Hi Steve,
yes Birmingham UK. Thanks for that it at least gives me some hope. I pee sometimes and it feels almost normal but I do not empty my bladder and they are very frequent. I get what I can only describe as mild urges and when I pee it takes a few seconds to start and unless I have (maybe) over 250mls in my bladder there is not much that finally flows.
I was told by one surgeon who is not directly connected to my case that I should cath less and make my bladder work more by allowing it to fill. The problem with that is, I only know if it is/was full after cathing and any other time it is guess work.
I become worried if I do not cath after five/six hours ....maybe I should leave it longer as most times when I cath now there has been at the most maybe 450mls & often less.
Although a few nights ago I cathed at 3am in the morning (could not pee anything normally) and 500 mls came out which was disconcerting to me. I notice during the night my system seems to go to sleep...of an evening before bed though, I pee more naturally sometimes going as many as five/six times and I can only guess maybe 3/400 mls. (I become fed up of measuring it) as I like to feel normal for a while and just pass it into the toilet while standing.
Motto steven05114
Posted
I am 14 days post-Rezum. 4-6 weeks? Damn, the doc didn't say it would take that long.
I'm not having to CIC during the day, which is new to me.
My Uro was a little surprised by my question: "Can I NOT have a Foley since I self-cath?" I could tell he was thinking about it, probably never had that question before it seemed to me, and said "yes." So I was pretty happy to avoid the uncomfortable Foley. Plus, in the ER a week before the Rezum, they tried to Foley me and it was too damn big to fit and the soft rubber could not make its way past the obstruction.
Of course the hottest nurse in the ER was the one to try.
Your procedure sounds a lot better than mine. I found it incredible painful especially for a couple of hours after. Going out to lunch would have been out of the question. The pain was much better the next day.
I'm just not very happy now being unable to pee normally and not even back where I was before the procedure, where I could pee relatively normally during the day and only had to cath once before bed. I don't recall how many injections he gave me. At one point he said 3 more but then did 4.
Motto
Posted
Typo: "I'm NOW having to CIC during the day..."
Not "not having".
steven05114 Motto
Posted
Motto,
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There is a fair amount of information on the Internet including from the developer of Rezum about opening up at the 4 week mark. It is important to do your research first before seeing a urologist who may not give you a straight answer or any answer at all.
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From the "REZUM--HAVE YOU HAD THIS DONE???????" thread on this forum, I was able to connect with a guy who easily recommended his urologist to me. She had good communication skills, had been a urologist for over 20 years and had been doing Rezums for about 2 years. I would easily recommend her too.
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She told me to keep the Foley in for 2 weeks which was no big deal for me as I had one in for over 3 weeks when 2 liters of pee was taken out of me earlier. I also got a stiffer reusable catheter which worked when there was swelling that prevented a softer catheter from going through.
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My Rezum "went as advertised", on schedule and with good results but due to bladder damage which was discussed with the urologist, my PVR's are still above 100 ml. The numbers have been going down though which suggests some more bladder recovery.
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The bottom line is to carefully chose your urologist, especially when new medical technologies are involved.
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Steve
steven05114 Motto
Posted
I hate it how you can't edit your own posts on this forum 😡 This forum is a good thing though 👍
steven05114 GInAndPlatnic46
Posted
GeoffReev,
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You do not want your bladder volumes to go over 400 ml when self-cathing to avoid further bladder damage! If you are getting volumes over 400 ml then increase how often you are self-cathing. Pushing the limit to around 400 is OK once and a while but should not be a regular occurrence.
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If you cannot feel that your bladder is filled, then that is a sign of bladder damage.
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When they took 2 liters of pee out of me in mid-January 2018, the biggest concern was bladder damage. I had a Foley for 3 1/2 weeks to keep my bladder always empty and relaxed. After that I started self-cathing about 4 or 5 times per day and in mid-April, I had my first sensation that I needed to pee.
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Because I was recording my self-cath volumes (in Excel), over time I could see a pattern of: first sensation at 190 to 200 ml, strong sensation at 250 to 270 ml, and really strong (I really got to go or else!) sensation at 350 ml.
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There is another guy on these forums who I communicate with who is also dealing with bladder damage. I highly encourage you to work with a urologist to get you self-cath volumes down and develop a program to heal your bladder.
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Steve
pluff_mud Motto
Posted
Glad we could help you with CIC. Hope you have a quick recovery from your procedure and that it restores your urinary function.
raffie Motto
Posted
There are plenty of CIC instructional videos out on youtube. Some uro's though are reluctant to give scripts for catheters as they like their foleys.
I'm curious. Has anyone who's had to have the Foley in for say over a week thought about or tried a Spanner Prostatic Stent, as an alternative to the Foley.
Manufacturer claims it's good for 30 days & ya don't have the bag hassle.
Regards,
Raffie
harry1289 raffie
Posted
I had a Foley in for 3 weeks after my Rezum procedure when the Uro suggested a Spanner and I said yes. When I got to the Dr.'s office he told me that my insurance wouldn't pay for another procedure for the same problem. He said I should try CIC. I had asked him for the CIC 2 weeks before and he said no, not a good idea. Well I've been self cathing now for 5 days, twice a day, and am very pleased that I have my life back. I'm noticing improvement every day.