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Update on Hyperbaric for Bladder Radiation Cystitis

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Posted 6/19/2020 3:47 PM (GMT 0)
This is an update on my journey through Hyperbaric Oxygen Therapy. I began this course of action after being diagnosed with Radiation Cystitis of the bladder. At first the Uro thought I would need to have my bladder removed. After researching through healingwell and finding others had tried HBOT I discussed it with my Uro and we decided it was worth a shot.

On Wednesday, I completed my 60 treatments and with very few exceptions I have not seen any blood in my urine since about treatment 31.

For the next couple of weeks I plan to leave the Suprapubic cath in place so that I can plug it off and retrain my bladder and sphincter control. I will only use the cath and the overnight bag at night for sleeping.

Really hoping all goes well with both the bleeding and control. I really like this bladder as I have had it for 72 years.

My best to you all and hope all are safe and doing well.
Sonny
Posted 6/19/2020 5:05 PM (GMT 0)
I wish you all the best for a great outcome, Sonny!

Djin
Posted 6/19/2020 5:29 PM (GMT 0)

Hello Sonny3 •••

Your update is a testament to the research you did, the due diligence you undertook in seeking out options, and the perseverance you have shown through 60 treatments.

I'm thankful you are experiencing success from your treatments.

It's very meaningful to read that seeking some background from this Healing Well website provided you with topics and ideas to discuss with your doctor, in regard to your hyperbaric oxygen treatments.

Here's to continued improvements, Sonny3!

Thankful to hear your good news,
Cyclone ~~~ # Iowa State University
Posted 6/19/2020 6:59 PM (GMT 0)
Sonny, as always you are right on top of this and making sure you do everything possible to overcome the issue. I am praying for you, you deserve a good outcome on this thing.
Posted 6/20/2020 5:07 AM (GMT 0)
Congrats Sonny. 60 is a darn long time. I did 40 and they recommended 10 more near the end and I passed. My Urologic Oncologist at UCLA also suggested recently, after diagnosing me with hemorrhagic cystitis, that I should do another 20 at least. I may do it again after summer is over.

I hope you have continued success. -JR
Posted 7/16/2020 6:28 PM (GMT 0)
Sonny and CaliJR,

I know this is sort of a zombie post, but I have questions. Randy has been diagnosed with hemorrhagic radiation cystitis. The doctor originally told us there is no treatment and no cure. After I came home and started looking around, Hyperberic oxygen therapy came up. I don't think his has reached the point your had. Urination is not painful, but it is frequent. He started have blood in his urine on Memorial Day, then nothing for 2-3 weeks, then 3 times in a week, and it's escalated to a couple to three times per day. This morning, it looked like someone had been murdered in the toilet. I asked his doctor via patient portal this morning if this was an option. She said it was usually reserved for people who were losing enough blood to require transfusion or hospitalization, although she did not say why. Were you guys being hospitalized prior to treatment? What kind of results did you have from the treatment? Was it daily? Any information you can share would be appreciated. Thanks, Donna.
Posted 7/16/2020 7:18 PM (GMT 0)
Hi Donna. Sorry Randy has some escalated cystitis issues... they suck.

How was he diagnosed? By cystoscopy? The first line of any treatment for cystitis is Hyperbaric Oxygen, especially for radiation induced cystitis. In my opinion, he is already at the point of needing that treatment so I am unsure of what your doctor means by waiting until he needs hospitalization. I was in the chamber with about 7 other guys during my treatments there, all of cystitis. I was not hospitalized before hand. This was to help prevent me from getting sent to the hospital for possible urinary retention issues. I did have some resolution to the current symptoms I had last year, and I was able to go down to one flowmax per day instead of two, unfortunately around May mine has progressed to a later stage (stage 3).

Hemorrhagic Cystitis has 4 stages:
A grading system for severity of hemorrhagic cystitis has been proposed by Droller et al., for hemorrhagic cystitis.The main use of this grading system is the standardization of scientific studies on this subject.
0 – No symptoms of bladder irritability or hemorrhage
1 – Microscopic hematuria
2 – Macroscopic hematuria
3 – Macroscopic hematuria with small clots
4 – Massive macroscopic hematuria requiring instrumentation for clot evacuation and/or causing urinary obstruction.
(above quoted from [url]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2938536/

UCLA has a good pamphlet on radiation and HBO treatment for their chamber: https://www.uclahealth.org/Workfiles/clinical_updates/hyperbaric/HyperbaricMedicinePUP.pdf

I did write up my whole experience on a previous post: https://www.healingwell.com/community/default.aspx?f=35&m=4170229#gsc.tab=0 (or search 40 HBO treatments) Hopefully you will find that helpful.

I would either press your doc on the HBO treatment or find another Urologist who will prescribe the treatment. I wish you and Randy good luck on this treatment. Take care. -JR
Posted 7/17/2020 7:23 PM (GMT 0)
Thanks, Cali,

Randy had failed AUS surgery back in November. After a long complicated, painful ordeal, the AUS was removed in January. Bleeding continued until March. A cystoscopy was scheduled and canceled due to Covid, but the bleeding stopped on its own. On Memorial Day he had another episode of bleeding right after a BM. (All the bleeding after the 2nd surgery was directly after a BM). Then nothing for a couple of weeks. Then he had a couple of episodes in a week, then 3-4 episodes. Now it's escalated to daily. Sometime a couple or three time per day. Some times it's mild and sometimes it looks like a murder scene. Tuesday he went back in for the cystoscopy and was diagnosed. When I asked the urologist about hyperbaric therapy, she said they usually reserved that for men who've needed transfusions, or were being hospitalized. Randy doesn't have pain on urination. He doesn't have problems urinating. He does go very frequently. Her only suggestion was for Randy not to over-exert himself, drink lots of fluids, and not to "hold it".

Donna.
Posted 7/17/2020 7:31 PM (GMT 0)
Hi Donna... still seems like HBO would serve him well or at least some benefit. That is what it is for. Although the process itself is fairly taxing each day and if you have a facility close by. I am also on a minimum lifting order )and no constipation, if I can help it). These escalating side effects really suck. Sorry Randy is dealing with them. Good luck and take care! -JR
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