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Posted 2/4/2023 1:22 AM (GMT 0)
There's also Optilume a tube inserted with medication like Taxol that dilates and shrink's the stricture.
Regular dilation does not have the medicine part

Glen
Posted 2/5/2023 4:08 AM (GMT 0)
I may be a little paranoid but having hematuria for so long I wonder if I'm losing too much blood?
I understand that it doesn't take a lot of blood to bloody one's urine but it's been almost every urination for weeks.
I feel okay and my blood pressure is well the lower number is lower than usual but otherwise normal 126 over 56
Usually it's over 70
Just curious

Glen
Posted 2/5/2023 4:11 AM (GMT 0)
Oh I'd add that I urinated at a restaurant today and it came out all blood bright red followed by clear urine.
I suppose that suggests that it's coming from the lower urethra.
Or not... Not sure

Glen
Posted 2/5/2023 8:28 PM (GMT 0)
My experience has been that it was blood, then clot, then clear urine. Its been over a week since my last (and worst) episode. Still drinking plenty of water. Interesting about the hyperbaric study indicating better outcomes within first six months. Mayo had also recommended a regimen of Vitamin C and E. Ever heard of that?
Posted 2/5/2023 9:39 PM (GMT 0)
Yes me too. Every once in a while it's clear.
Yes lots of water and multiple vitamins
Also zinc and cranberry juice or pills.
Lots of blood today but last was clear. Makes no sense

Glen
Posted 2/5/2023 10:23 PM (GMT 0)
I wish I could do the hyperbaric thing.
I took the subway from Home Depot on 23rd Street and when the train stopped between stations I was about to ask if anyone had a Xanax or something. I'd never really ask but my claustrophobia is severe so hyperbaric is out!
BTW I went to the bathroom once again in that restaurant and pretty much clear urine again.
My guess is my body is making new red blood cells and replacing what I've lost.
My BP is okay.
As I've mentioned my main concern is retention. Never want to go through that again.

Glen
Posted 2/6/2023 4:47 PM (GMT 0)
Feeling guilty about constantly posting about the hematuria etc.
The fear of being backed up scares me so.
Physically I just cannot do home care on myself. I know people live with having to catheterize themselves. With physical pain it's an ordeal.
My wife is annoyed that something can't be done right now.
As long as I'm voiding I don't complain.
Anyway just venting

Glen
Posted 2/6/2023 5:10 PM (GMT 0)
No apology needed. Keep venting.
Posted 2/6/2023 5:21 PM (GMT 0)
Thanks mattam

As long as it's flowing bloody or not, I'm happy.
That episode of retention just sticks in my mind. The ER visit was rough but the paraphimosis was the real horror story. In hindsight I should have insisted on a timely visit or gone to the ER when it started to look necrotic but the doctor took care of it just in time.
The paraphimosis was likely caused by misplacement of the catheter. Apparently when you are not circumcised, it's supposed to be placed a certain way.
Egads that scares me
Glen
Posted 2/6/2023 5:30 PM (GMT 0)
Since you are losing blood so regularly, you should probably take iron supplements. Have your iron level checked when you are seeing a doctor.
Posted 2/6/2023 7:39 PM (GMT 0)
Not yet I wish he suggested that

Glen
Posted 2/8/2023 6:47 AM (GMT 0)
Another bad afternoon into night.
Backed up for a little bit then a few small clots came out. Just a lot of blood but earlier I had two clear urinations.
Just wish I could speed up the appointment.
As I see it, doctor's just going to talk and plan so that's more time I have to wait.
Feel like it's the weight of waiting that is scaring me

Glen
Posted 2/8/2023 2:51 PM (GMT 0)
Have you been trained in how to insert a catheter? Perhaps you could relax a bit if you have some catheters around and knew how to use them. At one point when I was having trouble my urologist gave me a few catheters and showed me how to insert them. I never needed them but it was a comfort knowing I had them, especially when I went on a plane flight.
Posted 2/8/2023 4:55 PM (GMT 0)
Yes Thank you

I thought of that. As much as I'd hate to insert one, the pain of retention is worse. I do fear misplacing it and with the bad back and joints (plus I am 245 pounds) it is not an easy task.

I will ask when I see him next. This morning the first two voids were almost clear and the last one had a little blood.
So I am a little less stressed. Maybe I will have some red meat today to add some iron (maybe liver a rare treat)

Glen
Posted 2/8/2023 4:56 PM (GMT 0)
Swan, you sure have been through a lot. I just read a whole thread on radiation cystitis and there are quite a few that have dealt with the bleeding for years. I am surprised your doctor hasn’t sent you to the hospital, put you to sleep and cauterized whatever vessel that is bleeding. The bleeding won’t stop until they find where the bleeding is coming from and stop it. Also are you on any blood thinners? If so, maybe decrease the dose. Not a doctor, but you seem to be stuck in a never ending saga of nothing really being done to stop the bleeding to begin with. Hope you find some relief sooner than later. My best to you,
Jack
Posted 2/10/2023 3:24 PM (GMT 0)
Swan, I went through a bout of hematuria last spring. It lasted about two months. Three ER visits, cystoscopy, indwelling catheter, the whole nine yards. My oncology doc said it was from the radiation I had about eight years ago. The experience was not fun but I finally healed up. I only see blood or clots about once a month. I do see a weaker urine stream now. I blame it on the 22 ga. catheter they shoved into me (that's a whole other story). Drink more water and hang in there.
Posted 2/10/2023 6:17 PM (GMT 0)
Just happened to find this thread.

I went through the same thing, at this point I assume you have a stricture (same as me), first, find a pediatric urologist or one that can get a hold of a pediatric cystoscope, that will allow the scope to go through the stricture and look at your bladder just in case, it can also give you some idea of how bad the stricture is. I did it at City of Hope. My blood came from the tiny blood vessels in my prostate bursting not from my bladder. You may have the same.

I had a case where I had a complete blockage and had an emergency DVIU, they cut the stricture but this is supposed to last up to four years (per study). I am about four years out. I have done couple of tests for a more permanent surgery (urethoplasty) but I am still undecided.
Recently, Optilume was approved by the FDA, there are couple of video on Youtube, find the one that talked about the studies and participated by the two urologists that were involved in the study. Its still pretty new and I am not sure if it is really effective.
I did contact a urologist in Texas that has done the Optilume procedure but I have not decided to go through the procedure myself. My urologist at USC has not done any and the USC has just approved the procedure.
I did exchange emails with the Optilume representative in So Cal once, not much action here in So Cal so far.
Posted 2/11/2023 3:28 PM (GMT 0)
Thanks everyone.
At this point, yes I have multiple strictures in the lower urethra and a large one at the bulbar. During cystography the doctor said he's reluctant to force the scope beyond the stricture because it might make it worse.
He's sending me to a specialist. February 27
I'll know more after we meet.
Right now I've had a few clean void's but almost always have some blood.
No pain except occasionally a spasm in the lower penis.

Glen
Posted 2/11/2023 4:43 PM (GMT 0)
Thanks for the suggestion on the smaller cysto but my urologist said that the specialist may do the larger scope where they put you under anesthesia. They have to view the bladder. Urologist thinks it's likely cystitis but cannot say until they view it.
I'll tell the specialist about the pediatric cysto.
BTW when I had retention it was after only five IMRT sessions and yes the ER screwed up the last catheter placement.
Something to do with me being not circumcised that led to the paraphimosis.
Hopefully I'll not get backed up.

Glen
Posted 2/12/2023 12:26 AM (GMT 0)
Likely radiation cystitis. Suggest you get a bunch of intermittent catheters that you can use . Probably a size 16 French diameter. If you run into blockage you can alleviate the clots with these. Look online for video on how to do it. self lubricated type the best or if not, get something like surgical or KY jelly, it does not hurt and is preferable to going to the emergency dept late at night.
Posted 2/12/2023 12:33 AM (GMT 0)
I'll ask the specialist about giving me some.
Yes it'll be better if I could do it myself if I get retention again but I hope I'm able to.
I don't bend well and don't think my wife can deal with it.
We will just hope I don't have to.
It's pretty bloody again just now and I have some pain.
I'll just keep drinking water and taking cranberry pills

Glen
Posted 2/12/2023 7:53 PM (GMT 0)
Urologists usually will not force the cystoscope through a stricture.
How did you find out that you have multiple strictures? My stricture was narrowed to a complete blockage, you definitely don’t want to wait that long. The ER was unable to help with the catheter, the ER doctor stuck a needle through my pelvic area through the bladder and sucked out some urine to help relieve the pressure.

If you have strictures, catheter is not going to help you that much and it is not a long term solution, even my urethrotomy is a short to medium term solution. Right after my urethrotomy, they stuck a 24 French catch in my urethra for three days hoping to stabilize the opening but over time the stricture narrows again.

If possible, contact your specialist in advance and ask for a pediatric cystoscope, I think the adult size is 16 french and the pediatric is 8 french.
Good luck.
Posted 2/12/2023 10:22 PM (GMT 0)
I don't see him until the 28th
Yes I watched the screen while he snaked the scope and there were minor small red marks I suppose were stricture but toward the top area called bulbar urethra, there was a large scar like area halfway occluding the urethra which he said was too big to force through to the bladder.
I can view it now on the patient portal but don't know how to send it here to view.
BTW just had a really bloody void.
I gotta say I hate this hanging over my head.
I pray that I don't get retention again.

Glen
Posted 2/13/2023 4:10 PM (GMT 0)
Glen, urinating sitting down can provide additional force in case you have a blood clot.
Again, to not waste your trip to the urologist, call their office and let them know that they should expect a stricture and a pediatric scope should be available.
My urologist does not have one, this is in a hospital, even if I go to the main USC hospital, he said he have to arrange for one ahead of time.

I also had this test prior to the cystoscopy, I asked for it the first time I met with the urologist that did the cystoscopy. You may not even get the the procedure done on your first visit unless you were told that they are going to do it. They may just normally go over your records with you and schedule you for the procedure.

https://www.cxbladder.com/us/

My results came back as low probability of bladder cancer but it didn’t rule it out because I was a smoker 35 years ago.
Posted 2/13/2023 6:17 PM (GMT 0)
Thanks I do sit most of the time. I tend to spray so it's less messy.
Yes it'll be an office visit. It's the hoops ya have to go through. He'll review my records etc then we'll talk about options. I just hope I stay okay until I get treated.
My elbow replacement surgery didn't turn out well so I'm generally not too happy plus I have a colonoscopy set for Friday and worry about that as well.
Anyway one thing at a time.

Glen
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