Bladder ureteral obstruction/stricture

@jackpine
I believe your wise trying to avoid surgery and in dwelling catheters. I suppose I’m overly cautious but in your situation primarily because of your age but potentially other issues as well. Environmental factors, co-morbidities, medical procedures which likely will increase with age and may increase risks/outcome. I seem to always be the fly in the ointment.” I don’t like always being so negative but there are two sides to the story and you/we as patients are not receiving full disclosure of all the facts from both sides. I resent how doctors often spout off all the benefits and conceal potential risks regardless of how unlikely or rare they are. Well, this seems to be more of a rant so I better knock it off.
I hope your situation turns out for the best and good luck for now and in the future and don’t fear being devils advocate.
Take care,
Jake

@jakedduck1 , @jackpine I am personally glad I have never started indwelling catheters. I use a very stiff catheter made in France, I believe. It is stiff like an O2 tube. My sphincter above the prostate is tougher and stiffer than the miner's boots I used to wear. Takes a good shove to get the cath in, so I bleed a lot. But I prefer that to the indwelling. And I have used them for 10 years, and I am still alive., sometimes up to a 1/8 cup of clots and blood a day. The sphincter is tough because it has been invaded by fibrils from Gelsolin and lost nerve control through LGMD4.

Thanks for the info. Please tell me more about this French catheter. But it sounds like you're describing an indwelling. That's a lot of blood.

Yes and there could have been ways to possibly head off the TUR surgery which created this severe incontinence. That's why I'm looking at Mayo and Hopkins.

@jackpine , The cath I use is made by Convatec Limited. The first address I have is First Avenue, Deeside Industrial Park, Deeside, Flintshire, CH5, 2NU, UK, I guess. I also have an address as Unomedical, A/S` Aaholmvej 1-3, Osted, 4320 LEJRE DENFARK. So I guess they may be Danish. Manufactured for Convatec Inc, Greensboro NC 27409 USA. The cath is called the "GC-Glide Hydrophilic Intermittent Urinary Catheter. I get mine from 180 Medical.com. As I said, I use about 6-7 per day, around 200/month. The 180 people are very regular and accurate. There are 30 in a box, and I use the Male CH14. Yes, it is a lot of blood, but I also use North Shore large pads because they handle both the fecal leakage and penile bleeding. And I use an extra disposable pad under me at night. I get that at Walmart or Amazon. "GC" is a trade mark of Unomedical a/s. My trouble is that all my internals are infested with protein fibrils from Gelsolin, plus Fukutin Limb Girdle Muscular Dystrophy Type 4. But when I have to spend time in the hospital or similar, I have to take my own catheters with me because the hospital only provides the indwelling stuff that I do not want to start. I don't have much longer to go, anyway, so I might as well be as comfortable as I can. And all we have around here are first-aid stations within 100 miles.

Thanks for the info, I'll look into it. And good health to you!

I am cursed with recurring BNC problems. Had a TURP procedure about 10 years ago. Three (3) months after surgery my flow stopped. For the first month I was like a 20 year old. So happy with my strong flow. Then the party ended. After 3 months I went back in to remove scar tissue. After this procedure, I made it almost 18 months and I'm back in again. Another 18 months, and dialation under sedation made the scar tissue pull away. I was taking a homeopathic medicine (thiosinaminum) which attacks scar tissue. The surgeon looked a bit confused after surgery. He told me he started dialation and was going to make a small incision in the scar tissue to open the bladder obstruction, and to his surprise, the tissue just pulled away. Maybe the thiosinaminum had an effect on the scar tissue. Not sure.
About two years ago I was told my prostate was enlarged again. The urologist performed "Aquablation". This is a water source which accurately removes prostatic tissue without heat and is very accurate. I was able to maintain the ability to ejaculate. The doctor told me he "cleaned up" some of the scar tissue. It's been about 18 months and here we go again. My stream is very weak and I know its the BNC issue.
I am trying to see a doctor who will perform the OPTILUME procedure. It is balloon dilatation, and the baloon is coated with paxilactil, a cancer drug used for bladder cancer. When the balloon is dilated, it causes fissures in the scar tissue and the cancer drug penetrates into these fissures. The drug inhibits the growth of new scar tissue.
I hope I can quickly find a doctor to perform this procedure. I am 69, in great health, and my life would be so wonderful if I could rid myself of this ongoing problem.

Has anyone researched the Optilume procedure? I have recurring bladder neck stricture. After my TURP surgery, I had a great stream for 3-4 months, then my stream became a trickle. I can't tell you how upset I was after experiencing the stream of a 20year old young man. The culprit was scar tissue at the bladder neck. I have since been back to open the blockage three (3) times! The new Optilume is a chemo coated balloon using pactilaxel. The balloon is inserted, expanded, and the chemo drug enters the fissures caused by the balloon expansion. The drug inhibits regrowth of scar tissue. Now here's the latest news. My university hospital researched the procedure and declined to incorporate it because is was not profitable enough for the urology department. Has ANYONE out there had this procedure??????

So sad for Insurance Companies and Hospitals to dictate our health treatment - and then the bottom line is $$$ (Profit). It seems grossly unfair.

My daughter has been living for 5 years with bladder problems. She is almost constantly in pain and urologists, etc. can't get to the bottom of it. She's been treated at Yale and MIT, so no lack of experts. She recently was told about an oxolate diet which is for kidney stones. She hasn't kidney stones but it does run in the family. Her problem is more like a connection between the brain and bladder; the nerves between the two. However the description of "being stabbed by shards of glass" describes her symptoms.