HealingWell
Search Close Search
☰

Suprapubic catheter

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 7/18/2022 1:31 AM (GMT 0)
I'm wondering if any of you have had a similar experience. I had salvage radiation in 2010. In 2019 I started having bleeding so bad in my urine that a golf ball size clot kept me from being able to pee. I went through two cystoscopies, about 14 catheters, and 40 treatments of hyperbaric oxygen therapy before I was finally able to pee on my own.

Forward to this year. I started noticing my urine flow was getting lower and lower. My urologist tried to do a cystoscopy but pulled it out before he got to my bladder. He said I had a stricture and referred me to another urologist who specialized in stricture treatment. He said it was caused by the radiation. I think that's only part of it. I think a lot of damage was done in 2019 by all the insertions into my urethra. He did a balloon dilation with Optilume (chemo drug that imbeds in the scar tissue). I was sent home with a catheter. 5 days later it was removed. I passed void test in the office but about 3 hours later, I couldn't pee. Went to ER, got another catheter, and had a UTI. Sent me home with antibiotic. 14 days later, did another void test, I was able to pee at the office, but a few hours later could not pee. Went back to the urologist. He said I could self catheter and keep trying to pee on my own, but the dilation definitely worked. I have never been able to make myself self catheter, so the 2nd option was to have a suprapubic catheter put in with a valve on it. He said I could keep trying to pee, but if I couldn't, I could void with the valve on the catheter.

The idea of having a suprapubic catheter scares me. I know how simple the doctor made it sound, but I've read about too many men that, once they go that route, are stuck with it the rest of their lives. Has anybody here had experience with this?
Posted 7/18/2022 5:44 PM (GMT 0)
I don't have any advice but remember seeing posts regarding the suprapubic catheter before, I believe a member has had it for about five years and have had positive experience with it.
I too suffer from radiation induced stricture that completely blocked the urination in March of 2019.

Your experience with drug coated balloon Optilume was not encouraging as I am about to explore this option, it was recently approved by FDA. You must be one of the earlier ones (trial?). I think it depends on where and how long the stricture is for it's effectiveness. Also, have you considered doing it again that they have standardized the procedure? Where did you do the Optilume?

The last option would be urethroplasty which is a major procedure, I have seen a specialist but am not ready to try it as it is quite involved. The urologist that I saw for urethroplasty has done more than 500 of urethroplasty.

I am interested in what your final decision is going to be?
Posted 7/18/2022 8:34 PM (GMT 0)
@akai
Actually, my experience with the Optilume was good. It definitely got the stricture open. I'm just having some kind of trouble with my bladder either2 from the radiation damage or signaling. I'm not sure what. Or it could be that when you're as dependent on a catheter as long as I've been on one in both 2019 and now, it can cause your bladder to "forget" how to function. In 2019, it came back and I was able to start peeing again. Now, with my bladder being older, its got me worried. But, no doubt, the dilation with Optilume was a success and I would highly recommend it.
Posted 7/18/2022 10:23 PM (GMT 0)
Thanks Spark,
Where is your stricture located and the length of your stricture?
Where did you get the Optilume procedure? I am unable to find a urologist in So Cal that performs such procedure. I contacted the company through their website but received no reply. I watched a very informative video on Youtube participated by two pioneer urologists that conducted the trial.

For myself, I had a DVIU, my stricture was rather short (about 1cm), membranous urethra. I am a good candidate for urethroplasty but I am not a fan of such intrusive procedure after suffering through HDBRT.
Posted 7/18/2022 11:31 PM (GMT 0)
@akai
I have two. First one is 3 cm long and is near the tip. The 2nd one is right where the prostate used to be. I'm not sure how big it is but whenever anybody inserted a catheter (before the dilation) that's where they would have trouble, so I guess it was the worst one. I had mine done by Dr. Osterberg who is with Ascension Seton Urology in Austin. It seems that all the local doctors refer to him. My urologist referred me to him. It might be worth a trip to Austin to get it done. At 1 cm, it seems like this would work for you. I can't find DVIU in the abbreviations - what is that?
Posted 7/18/2022 11:44 PM (GMT 0)
Thanks for the info on the urologist. I may consult with him, I do have an appointment with one of the reconstructive urologists at USC on August 1st in which I plan to bring up Optilume option and hear what he has to say about it.
DVIU is Direct Visual Internal Urethrotomy, it’s just a full name for urethrotomy.
Posted 7/19/2022 12:35 AM (GMT 0)
Sparky9

I had a stricture about 1/2 inch from the tip of the penis. I can tell you it is definitely caused by the catheter which is too large. There was a study done by a urologist group that found catheters larger than 18 French. I was able to resolve the problem by dilating it every morning and evening for about a month.

As for the suprapubic catheter, I knew a woman that had one due to cancer. She said it wasn't any problem and said it was convenient. She did say that sometimes while in the women's bathroom women would see her standing up to pee behind the closed door and would say something or leave thinking a man was in there.
Posted 7/19/2022 3:54 PM (GMT 0)
I had the SPC briefly after my second AUS procedure. I tend to forget that I'd even had it unless the subject comes up. I don't remember any problem with it other than after a while it would tend to clog with lack of use after I started to pee normally. The Uro just pulled it out. It felt weird but wasn't actually painful.

I may have a stricture and will be seeing a specialist next month regarding replacement of my AUS (again) and this time a possible urethroplasty has been mentioned, as I did have adjuvant RT following the initial device implant and my uro at that time mentioned scarring. Needless to say, I'm not real anxious to reopen this can of worms as everything is working, for now anyway, just leaks a lot and I have to sit to pee because the AUS requires repeated pumping and the urine flow is unpredictable... often ending up on my pants.
Posted 3/3/2023 9:33 PM (GMT 0)
This being a Old post I don't know if I will get a reply.
I'm going through a rough patch with two recent near retention episodes. After a spasm in the end of my penis, I sprayed out small clots and was able to pee
Last week I sat and pushed with even my rectal muscle and large clots came out. I'm awaiting the DVIU balloon dilation on the 17th
Urologist visualized a large stricture near the bulbar and didn't want to force the scope beyond the stricture.
So much blood for so darn long scares me.
I'm praying for success with the dilation but need as much info I can get as well as your experience.
Main concern is retention so I'm drinking water like crazy and taking cranberry pills just in case they help. Urologist said that it couldn't hurt. Vitamins too.

Glen
Posted 3/3/2023 10:28 PM (GMT 0)
Oh BTW I use cranberry pills because the juice has a lot of sugar added. Cranberries are very tart and straight juice would probably pucker my mouth shut Lol

Glen
Posted 3/5/2023 8:53 PM (GMT 0)
I'm happy that there are options but none seem all that great.
Self dilation may not work for me because my right arm and hands are kinda numb and my arm rock's to and fro due to failed elbow replacement surgery.
I'm having dialation on the 17th and maybe Optilume. I say maybe because we spoke about it but not sure if he's going to use anything other than dialation.
Seems my stricture is severe but to My eye as I saw it on the scope, it seems to block maybe less than a third of the urethra.
I'm still passing blood and clots but once in a while I'll be pretty clear.
Overnight I use a Depends pad and it's always pretty bloody in the morning

Glen
Posted 3/11/2023 9:45 PM (GMT 0)
@theswan
I have had a lot of blood since 2019. We got it stopped after two bladder fulgurations and about 25 - 30 hyperbaric oxygen treatments. I didn't have any bleeding until the stricture incidents started happening. It's not much, but it feels like one of my spots on my bladders bursts if I push to hard while peeing or having a BM. It comes and goes. When I do have blood, as long as I drink a lot of water afterward and flush it, I have no problem. If I don't do that it will clot up and in about a day or so I'll push it out. If you see mostly blood mixed with urine, you can just flush that out. I was seeing solid blood coming out back in 2019.

When you say spasm near the end of your penis, is that an intense burning feeling? The reason I ask is that each time I have my suprapubic catheter put in, I have bladder spasms for 3-5 days. But the place I feel them is in my urethra. It's an intense burning feeling.

Since my initial post on this subject, I went to a urologist at MD Anderson where my cancer treatment is being done to get a second opinion about getting a urethroplasty, the complex surgical fix because I hate having the catheter even though it is convenient. The urethroplasty is described as the gold standard for stricture repair and has a 95% success rate. I found out from this doctor, that the success rate goes down to 50% for patients like me who have the history I've had with so much radiation cystitis scarring and bleeding. It pretty much deflated my hopes of every being free from the SPC. I've had a little time to think about things and if he or my other doctor are willing to do the surgery, I may go for it. I'll take a coin flip chance to be able to pee again.

Long story short. Your situation doesn't sound nearly as bad as mine has been, so I think there's a lot of hope for you being able to get through this and have a normal peeing life. You may be a better candidate for the dilation with Optilume than I was.
Posted 3/11/2023 10:03 PM (GMT 0)
Thanks Sparky
Thus far today I've been pretty clear. Some Pink tinge once but maybe four times it's been okay. The burning stopped and all that's left is mild irritation.
This however has happened before and then eventually the clots return.
Clots are jelly like and all sizes up to a couple of inches. The spasms happen once in a while but are robust just before passing out a large clot. I've had to actually use my rectum and muscles down below to force the passage.
I'm happy for what you're written. My hope is that the doctor clears the bladder or wherever they are coming from. Maybe he can dialate me and that will be it.
Right now it's a bit of a mystery.
Right now all is well. I'm voiding okay and have less worry.

Glen
Posted 3/11/2023 10:06 PM (GMT 0)
Oh and flip the coin but arm yourself with as much info as possible. I'm pretty sure you're done that already.

Good luck sparky
✚ New Topic ✚ Reply