Radiation Proctitis

[BadNews4me]

Heavy rectal bleeding. No change after 20 of 30 hyperbaric Oxygen Treatments. Losing confidence. What is my next option if needed? Surgery?

[kainasar]

Mesalamine enemas and suppositories work for alot of patients ( based on their reports) also Hydrocortisone suppositories are used. Diet , stool softeners and vitamins work for some. see Cleveland Clinic and John Hopkins health advisories. hope this helps. Btw, one might want to look out for anemia after consecutive bleeds.

[BadNews4me in reply to kainasar]

Thanks kainasar, I’ve tried each of your suggestions before HBOT. I’m with Cleveland/Martin health group and receiving iron infusions and blood transfusion. Looking for options if HBOT fails other than surgery.

[Tall_Allen]

Have you tried any of these: bipolar cautery, (Nd:YAG)/KTP laser, radiofrequency ablation, argon plasma coagulation, formalin, or ozone therapy?

[BadNews4me in reply to Tall_Allen]

Appreciate the info Tall_Allen. Will have to research your suggestions most are new to me.

[Turt713171 in reply to BadNews4me]

Have you considered seeing a colo rectal surgeon ?

[BadNews4me in reply to Turt713171]

Hello Turt, my colorectal surgeon was the one who referred me to HBOT. He wasn’t excited about surgery for me. Hope all is well for you.

[Irun]

I had very heavy bleeding after radiotherapy, started about 6 months after treatment ended. I spend a year with twice daily suppositories but they made little difference .In the end I had laser treatment , it was so simple and painless (although I did get a hot sensation internally) .

I had to fully empty my insides and then it was 10 minutes while the doc zapped me internally whilst I watched on a massive screen , a bit like Star Wars meets fantastic journey !

That was it , since then no bleeding apart from very occasionally when what I now guess is piles after I run a marathon or more but not all the time .

I would 100 % go for laser treatment , only wish I had not wasted a miserable year before having it .

[BadNews4me in reply to Irun]

Thanks Irun for your post. Can you elaborate a bit more on laser treatments. Like Drs and location of treatment. And how does is this different from Argon gas I’m very concerned about aggressive treatments doing more damage to severely damaged tissue.

[Irun in reply to BadNews4me]

I am based in the UK so precedure was undertaken by our wonderful NHS. No idea what the technical term is but from what I could see on the 60 inch screen of my colon/ bowels there was a probe that heated up all the obvious (at that magnification) fissures, every time the probe touched one (dark red) it want zap, turned it white and then moved onto the next one.I personally can’t see any risk to this procedure as it’s a no drug solution and the probe is thinner than your average stool. All I can say was it worked for me.

[BadNews4me in reply to Irun]

Irun, happy you had positive results with your procedure. I will continue with hyperbaric treatments and 🙏for positive outcome while searching for other treatments if necessary. Stay well my friend.

[middlejoel in reply to Irun]

Irun, so after the treatment everything seemed normal for 6 months, or did you have symptoms of some type? Is there a reason why the bleeding developed after 6 months and not before? What kind of radiotherapy did you have?

[cesces]

Get on a long and sustained course of trental.

It's safe, cheap, and also generally good for you.

[BadNews4me in reply to cesces]

Cesces thanks for the info. Was trental used for radiation proctitis, severe rectal bleeding?

[cesces]

Yes, among other things.

It's a no brainer. No side effects. Increases circulation to many tissues.

Generally good for you like metformin.

No contraindications that I am aware of.

And it works.

[BadNews4me in reply to cesces]

Thanks. Appreciate the info. Have a great weekend.

[MBOY1]

I went through 30 treatments and my incredible, perhaps miracle improvements didn’t come for several months post treatment. Hang in there and don’t quit. I had some proctitis but severe radiation cystitis and prostatitis. Good luck and please let us know if you get relief down the road still.

[BadNews4me in reply to MBOY1]

MBOY1, that’s very good to hear. Did you pursue any other treatments after your 30 sessions? Stay strong and keep fighting.

[MBOY1 in reply to BadNews4me]

No. HBOT was a last ditch effort after nothing else had worked. Keep us informed on your progress. Hyperbaric oxygen treatment is not well enough known even in this group.

[Rsdutcher7]

My husband tries to do a coffee enema or even water enema 1st thing in AM and we bought a HBOT chamber and he uses that 2 hrs/day, 6 days a week! That stopped the bleeding and pain after a few months.

[BadNews4me in reply to Rsdutcher7]

Rsdutcher7, thanks for your reply. I just completed 22 of 30 (maybe 40) sessions with my fingers crossed for improvement 🙏

[John438]

I am a veteran of radiation proctitis and hyperbaric chamber treatments. My first mistake was I had only one laser treatment and I should have tried more. Warning the story story is about to get long winded. So stop here if I answered your question.

Next I went to a colorectal surgeon and they did a formalin treatment and that’s when the real problems started. After the treatment my rectum was basically pickled and would no longer stretch to allow anything to pass either out or in without great pain. So I next was a year of pain management they gave me enough meds to supply a west virigina town, not effective and I haven’t been able to sit for any length of time due to the pain. I was basically on my back for a year. Next came the hyperbaric chamber treatments 48 of them with no difference. As a last resort I went and had a colostomy hoping that would relieve the pain and give things time to heal. 4 years later and I still have pain when sitting down, but back to the medical fun last year radiation cystitis kicked in and after having a catheter in for 40 days I became incontinent. Back to the hyperbaric chamber for 48 more sessions this time it seamed to help with the bleeding but not the incontinence. So just before the first of this year I had an artificial urinary sphincter installed.This is the only procedure that has worked for me in the last seven years.

Good luck, give the laser and hyperbaric treatments time to work. It could take a few months and keep asking as many GI Doctors as you can find about the next steps.

[BadNews4me in reply to John438]

John438, it’s terrible what you have been going through. Prayers for better days ahead for you. You keep strong and never stop fighting. I will continue researching next steps.

[RVALuna]

For Bad news, DR. Snuffy Meyers who had talked many times to our Support group in Richmond, Va. ( rvaprostatecancersupport.org) related that he had rectal bleeding after his high dose radiation after a year and a half. He used Proscar to stop the bleeding as Avodart wa not available about 2001. Avodart is available now and should work even better. They may reduce cancer coming back also. I used( still do ) both to control my BCR for 16 years starting 5 years after surgery in 1994. Now on casodex, proscar and avodart, plus doxycycline and Metformin for 3 1/2 years and I hope for another year. My 6 lymph node and one hip bone mets that developed after PSA rise (Dec.2014 to Dec 2017 with PSA rose to 12.2 from 2.2) are in remision with PSA=0.07 now. I have germline Mutation TMPRSS2-ERG fusion gene and two brothers with PCa with th sme mutation which makes us very prone to testosterone growth but also makes us respond androgen blockers like casodex and other "lutamide type drugs" But I have been able to avoid ADT and it side effects. But my Brther was not and fatique and trouble walking on after 4 years on ADT and Enzalutamide so he dropped and his PSA went from 0.07 to 6.2 with a dopping time less than 2 months. I Suggested he take a Nitric Oxide booster for his muscles and brain at 84 years ( to increased blood flow) and he is now after a year able to walk with out his cane and his PSA dropped to 1.8 over 8 months.

Now, his PSA has start to rise again and he is switching to try my drug regime above, but is too early tto tell if it is helping? He is a 29 year PCa survivor and I am only 28 year guy. His diagnosis help me seek help and my experience help my other brother avoid diagnosis until 2019 for 14 years after 2005 biopsy showed high grade PINS. During this time (2005 to 2019) I supplied him with antioxidants and Antinflammatory supplements like Biocurcumin and Green Tea etc see website above. He is on Active Surveillance using my off lable Drugs, proscar and avodart, plus doxycycline and Metformin from his GP.

His PSA is 1.5 with his Prostate at 82 yrs aand Gleason of 3+4. Best Pedro luna

[BadNews4me in reply to RVALuna]

RVALuna, my best wishes for you and your brothers as you fight the monster. Keep fighting and never quit. I have more research ahead of me and appreciate your post.

[MateoBeach]

You need a Proctologist or Gastroenterologist with experience and the technology for laser treatments. Since it is heavy bleeding I’d skip straight to that. “Do not pass go”. Not clear to me that HBOT actually changes the course of the problem. Trental does help the tiniest radiation injured capillaries to heal over time but won’t stop the larger bleeding ones. Just my opinion.

[BadNews4me in reply to MateoBeach]

Hello MateoBeach, I’m well into HBOT so will continue treatments. But will start researching laser treatments and a Dr with experience. Appreciate your assistance. Have a great Memorial Day weekend Stay strong and never give up. Jerry