Fifteen months removed from EBRT having severe rectal bleeding. Tried APC no improvement. Using Canasa suppository each night and Hydrocortisone suppository in morning. No improvement. Latest Drs recommendations is Hyperbaric Oxygen treatment.
Feedback or personal experience with this treatment appreciated.
I've known a couple of patients who went through HBO. It helped tremendously for one, but did nothing for the other. They both talked about how long and boring it was.
Thanks TA. Multiple and 2 hour sessions would be very boring but continuous bleeding affects QOL. With the limited options HBOT at least offers hope of improving. It may be a long shot but doing nothing doesn’t get me excited.
Good luck! I hope it resolves the issue. An RO I work with is identifying a genomic profile of those who are especially sensitive to radiation. Maybe that will someday spare others such problems.
Yes a lot of what we go through is for the benefit of others. We take steps where others first went now others will follow our path to better treatments. Stay well Tall_Allen. You are a rare asset for all of us.
BN4M.....I had pretty severe bleeding too...thought hemorrhoids ...turned out to be from the 45 fractions of rads....during recent colonoscopy had a large area cauterized and it has taken care of it nearly 100%....thats all I have to offer ...good luck .
Tried that but didn’t work. Thanks for your input. Great news of your success.
I’ve had 2 different sessions of hyperbaric chamber treatments. First time was for my radiation proctitis, it didn’t help at all. After that I was in so much pain I had a colostomy, not much relief there either just a new set of issues. The second time was last summer for cystitis. The doctor said that maybe the first session delayed the onset of cystitis by a few years. So I went through another 40 sessions which seems to have helped stop the bleeding and blood clots. And yes it can be boring so I made sure not to watch any news shows and just watched cartoons or DVD’s to keep my blood pressure down and engage in mindless entertainment.
Colostomy not my cup of tea. Research shows bleeding can self correct over time and HBOT may accelerate healing. Keep well John438.
The colostomy was a last resort after 3 years of intense pain 4 different GI docs and procedures, a year of pain management and then the hyperbaric chamber. The radiation fried my rectum and the scar tissue would not expand to pass waist without extreme pain. So the last resort was the colostomy. I don’t mean to scare any off anyone from radiation or any other procedure. It’s just that I have been in the 10% group of every operation that doesn’t get relief after every procedure. The only exception has been the AUS operation so far so good.
John438, sounds like it was a nightmare. Hope your colostomy has worked out without issues.
Following. Am about to start 40 treatments for radiation cystitis
Blueslover, save me a seat as I hope to get started soon. Best os luck as you move forward fighting Pca and all the side effects.
Hi BadNews. Maybe you’ve read my prior posts regarding my experience with HBOT.
Within the year post proton treatment developed severe radiation cystitis and prostatitis, not the possible proctitis you’ve mentioned. Interestingly all 3 are covered by Medicare probably because it works for some patients.
I developed calcification inside my prostate which my uro was reluctant to remove as he worried about breaking the prostate lining and causing even more issues. I also was peeing close to 50 times a day. Within a year I had 8 cystoscopes to dilate or cut strictures that kept reforming. Around this time my kidneys began to function poorly leading to stents in both ureters which was expected , if all went well, that this would be for life. And that was the good news.
A friend suggested I look into HBOT and my uro agreed it was worth trying as I was at a dead end. The treatments themselves, as mentioned by others, are very tedious. Our chamber was at hospital and had 8 seats though only 3-4 of us most days. They showed movies with subtitles and we strained to see the words through the opaque hoods we wore.
About 5 months post treatment I was having my uro change the stents (they change them very 3 months) and I awoke from the anesthesia and wasn’t wearing a catheter as I expected. My doc came into room and told me there was no calcification anymore and also he did not replace the stents. I asked how was all of this even possible? He said he could only attribute to the HBOT continuing to heal me for months afterwards. Really a miracle for me.
There are some side effects that can happen during treatment that dissipate within a few weeks like distance vision and hypertension. It also can speed development of cataracts which was a good thing for me.
I encourage you to expire this option. As everyone told me, it might help and it can’t hurt. Good luck.
MBOY1, Thanks for taking the time to share your experience. What a trip!
So glad to hear of your positive result.
I’m going to try the HBOT treatment as soon as scheduling contacts me.
Please stay well and never give up.
Good to hear. Please check what the equipment is that they are using. I did mine in a hospital which had a machine chamber that produced I guess the clearest purest oxygen. They accepted Medicare. There are other commercial HBOT chambers in my town but not rated as strong and therefore no Medicare. If you’re taking this enormous effort to do it make sure it’s the best available. I don’t know the details but if you have questions about the machine/chamber I can get answers from the doc who runs ours.
We bought a chamber after my husbands radiation treatments. He does it in our own home 2 hours a day/6 days a week currently. It's comfy to lay in and just read, listen to audible or watch a movie while healing! And it pays for itself in time and money spent trying to get at a clinic. No way of knowing if its working or not yet as he's about 3-4 weeks in now.
I certainly hope you get great results. It sure would cut down on expenses and time traveling. And scheduling.
I had radiation cystitis and had to go to the ER several times.My urologist recommended HBO treatment.
I went to the chamber 5 days a week for 2 months.
It really worked for me.
It wasn't to terribly boring as they showed movies and I met some very nice people.
After my treatments I would occasionally bleed but nothing severe.
During the last year I have not had any blood in my urine.
Many others in my group also showed great improvement.
I swear by this treatment and highly recommend it.
Hope you have great results like I did.
Good Luck!
lavis, thanks so much for your reply. To hear of your success and that of others is very encouraging. And to be honest I needed to hear some good news. I’m doing my evaluation tomorrow so expect treatments to begin next week. Keep well lavis and stay the fight.
Jerry
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