Radiation Cystitis diagnosed and other issues since my last update

On January 15th, I posted a long overdue update on my journey. It included bladder damage that had finally showed up after 10+ years following radiation.

The urinary bleeding has gotten worse and Wednesday it required a hospital visit because on my inability to urinate for about 9 hours. This was the fourth such occurrence since my bladder scan, but the first that required going to the hospital. Seems the bleeding has gotten to the point that the urine is interacting with the blood to forms clots that are backing up the system, along with some constipation issues.

I met with my Uro on Friday and for the first time in my life I left with a Foley Cath. The options for this are few and all of them will have some sort of effect on QoL.

They are:
*Conventional Urostomy
*Continent Urinary Reservoir
*NeoBladder surgery

https://www.ostomy.org/wp-content/uploads/2018/04/uoaa_brochure_bladder_en.pdf

As my local Uro's onIy recommendation was a Urostomy, I did some researching on my own and found the other two options. I have requested an appointment with the Uro department of the Jacksonville, FL Mayo clinic as soon as possible. My local Uro may be quality for local standard issues, but I don't feel he has the depth and breadth of dealing with this as well as Mayo. Besides that, his manner is kinda dickish and I am ready to fire him anyway. He is relatively new to me as I have only seen him for this issue.

After doing a lot of research I am really leaning towards the NeoBladder, if I qualify. I will update on this after the appointment

I am sharing this info here because I have learned so much here since I was diagnosed and joined in 2009. Others may find themselves in this same situation and can use this info.

My best to all of you,
Sonny

that really sucks sonny. it's the fear of every guy who has had radiation at the apex. I respect that you have always reported the good and the bad. hope this one goes your way!

Thank you for posting and sorry to hear your issues. I am 3 years out from SRT and just started experiencing blood when urinating a few times. All scans and cystoscopy were negative for cancers and stones and likely radiation cystitis. One treatment mentioned to me was using a hyperbaric oxygen chamber to help it heal. Good luck as you move forward.

Not sure if it is related but I developed urinary stricture one year from IMRT, not even sure what caused the stricture. May or may not have anything to do with the radiation. I was unable to urinate, total blockage, and prior to that lots of blood clots during urination.
The doctor did a Direct Visual Internal Urethrotomy, very painfu,l and this is not a permanent cure. Supposedly stricture will reoccur again in the future.

MP

Sonny - that isn't what you wanted. Hang in there.

Hi Sonny, sorry to hear about your issues. I agree a center of excellence like Mayo Clinic is a better option. I have had a plethora of radiation damage issues to almost all areas of my pelvic area. At the end of last year I did 40 treatments in the UCLA hyperbaric oxygen chamber. They say they have the most success with radiation cystitis compared to radiation enteritis since the bowels are deeper in. I have not had complete relief but I have had some relief so it maybe something to look into before a more invasive procedure. I wish you luck on any treatments you choose. Take care. -JR