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EBRT/IMRT damage to bladder & urethra

Aloha,
Finally have some direction which will get me off of the pain management program. I used the analogy of an open wound, like the inside coating of the urethra has degenerated to where it is a wound that will not heal. Now dribble urine on it from time to time. Painful! So, my uro doc feels that there is sufficient damage to the bladder also that to include the bladder in a surgical fix would not be wise. It appears that the next step would be to have the urine drain directly from the kidneys to an ostomy pouch.
The Supra pubic Catheter did work for about 2.5 weeks but have been on & off the pain management for 3 weeks.
So, have any readers been through this and have an uro-ostomy and would be willing to talk about it?
Thanks,
Hamakua Coast middle of coffee picking season, behind as usual,
Joe

Re: EBRT/IMRT damage to bladder & urethra

Joe:
Over on the "Healing Well" site is a patient whose screen name is "Purgatory" who has been through this and would, I'm sure, be willing to talk to you.

Don K.

Re: EBRT/IMRT damage to bladder & urethra

Camai Joe,
I feel that my experiences have somehow earned me the right to discuss treatment of radiation induced soft tissue damage. I now am grateful to meeting a radiologist (retired) who had been around long enough to have seen this type of case more than once in the past.
No one can predict when standard radiation doses that very rarely result in delayed radiation “burning” months or years later will occur. I started noticing problems with a burning sensation after urination 2 years and 2 months after seed implant (I had EBRT followed by Brachy). This condition degenerated over the next few months into 24/7 pain, expelling the seeds, (and the extra stabbing pain when one would poke through into the urethra area) blockage, and pissing out tissue hunks the size of pencil erasers.
I submitted to a TURP which removed the strictures and relieved the blockage but after two months did nothing to relieve the other major symptoms and added a new one, incontinence. I was a total wreck, depressed, and did not how much more I could take. The sixty or so Vicodin I ate monthly at night did little to relieve the pain but allowed me a couple hours of sleep which was my only escape from the ordeal.
Enter Dr. Swartz, an angel of a lady, retired from the practice but filling in for my regular radiologist. With a gruff and very down to earth manner, she explained her past dealings with patients experiencing this condition. I was told that this type of injury would take 2 to 3 years to resolve naturally and that further poking around in there would tend to delay the healing process. Reestablishing tissue margins around the urethra is the key. She told me that in SOME CASES that Hyperbaric Oxygen Therapy helped. She also assured me not to feel guilty about Vicodin usage. This gave me a new hope so I took her advice and applied for the treatment. After 30 days my symptoms were improving. At the end of 60 days symptoms were improved to a much more manageable state. As if by magic, about 4 months after treatment, I awoke one morning to absolutely no pain. I have remained that way since!
So what have I learned about this? What can I tell others if asked?
1. Not all doctors have any experience with this so shop for one that does. They may be hard to find. I was fortunate enough to have run into one accidentally.
2. If Hyperbaric is offered, go for it. The high concentration of oxygen delivered to your tissues will stimulate most healing processes and help the body dispose of dead/dying tissue. While this treatment DOES NOT help everyone it is better to be proactive It is non-invasive but a big time commitment.
3. The body will heal itself sooner or later, unfortunately it is often later .
4. When faced with the depression and despair that arises you need plenty of support to deal with your issues.
5. Communicate freely with doctors about pain medication, don’t feel guilty (like me) about asking for more.
6. Above all. KEEP THE FAITH.
Pat – (Alaska, USA

Re: EBRT/IMRT damage to bladder & urethra

Aloha Pat,

Thank you for sharing this information. I have since looked at HBOT and one site, specifically for rad cystitis indicates an 80% cure rate. If I can get my uro-doc to talk to Dr. Swartz, do you think that Dr. Swartz would be willing to discuss this treatment? And how would I contact Dr. Swartz?

Since the problem began in April, it has continued to get worse. Even my pain management program just takes the edge off of the pain. It puts me in a position of no driving. I would be DUI if caught.

We are in the middle of coffee picking season and will be picking through the end of the year. Any time off for surgery recovery or HBOT would be very difficult.

How many HBOT treatments before seeing some change? How long each treatment? How many treatments did you experience?

Again thanks,
Joe

Re: EBRT/IMRT damage to bladder & urethra

Aloha Pat & others,
I am very happy to report that my uro-doc has agreed to the 1.3 atm HBOT, and has submitted the paper work to my HMO to supply such a unit.
Due to #2 incontinence it would be difficult for me to do what you did using a 3 atm HBOT. I am hopeful that my HMO will approve a portable unit in which I could have a bucket for emergency issues. It would also be impossible to leave the coffee farm for the 60 days that you endured using the 3 atm HBOT.
My uro-doc feels that if HBOT works, I would have 4 to 5 years before needing surgery to repair bladder damage, so I have my fingers crossed. The total cost of this particular unit would be about $15k.
Life on the Hamakua Coast. It is difficult but looking up a bit.
Joe

Re: EBRT/IMRT damage to bladder & urethra

I am the guy from Healing Well that was mentioned. I go by the handle Purgatory as well as David in SC. My bladder and bladder neck was severely damaged by a blotched SRT. I had a SP catheter in me for 11 months, while we waited for some kind of natural healing. It never came. During that 11 month period, I consumed over 1,000 Loratabs to help control the pain. All legal of course. At one point, extensive reconstructive surgery was considered at Duke, but it was ruled out due to the extent of radiation damage. In the end, I consented to the Ileal Conduit Surgery, which I had on 9/23/10. I know have an Urostomy, a stoma, and will urinate through a wafer/bag device for the rest of my life. It was a rough surgery, 5 1/2 days in the hospital, and a slow recovery at home which I am in the midst of. I begin outpatient PT this week. My life will never be the same, but trying to adapt to this new perm. life style. However, by no longer using my bladder/bladder neck with this diversion surgery, it has eliminated all the pain I suffered before, and ended any need for prescription pain meds. I am free to talk about any detail of this ordeal, the surgery, or recovery. Should add, I also had 6 corrective surgeries for strictures, and each of them quickly failed.

Re: EBRT/IMRT damage to bladder & urethra

David,
You an I had an e-mail exchange a few days after I had the SPC procedure and I was looking for some specific answers to questions. At the time I was sent home with no spare parts and had ask you about replacement parts. I did get an answer, but I did not understand what you were talking about and my reply to that e-mail went unanswered.
I have since been able to answer these questions and now have move into a potential new path which may lead to healing which we so desperately seek.
Joe

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