Anyone been diagnosed with Radiation Proctitis?

Posted by naiviv @naiviv, Dec 7, 2023

Has anyone have been diagnosed with Radiation proctitis? If so did you receive any treatment from Mayo Clinic?
Thank you.

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@naiviv, I believe that @mallika58 and @rtv have experience with radiation-induced proctitis. I added your discussion to the Cancer: Managing Symptoms support group as well.

Mild cases of radiation proctitis may not require treatment. Sometimes, however, radiation proctitis can cause severe pain and bleeding that requires treatment.
Here's some information on treatments from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/proctitis/diagnosis-treatment/drc-20376938

Have you had pain and/or bleeding? What treatment(s) have you tried?

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@colleenyoung

@naiviv, I believe that @mallika58 and @rtv have experience with radiation-induced proctitis. I added your discussion to the Cancer: Managing Symptoms support group as well.

Mild cases of radiation proctitis may not require treatment. Sometimes, however, radiation proctitis can cause severe pain and bleeding that requires treatment.
Here's some information on treatments from Mayo Clinic https://www.mayoclinic.org/diseases-conditions/proctitis/diagnosis-treatment/drc-20376938

Have you had pain and/or bleeding? What treatment(s) have you tried?

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Thank you

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In reply to @naiviv "Thank you" + (show)
@naiviv

Although related to prostate cancer, you might find the tips in this related discussion helpful:
- Looking for tips on managing Radiation-induced proctitis https://connect.mayoclinic.org/discussion/radiation-induced-proctitis/

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I had radiation proctitis after proton treatment for rectal cancer. Subsequent treatment with radiofrequency ablation, but using Halo 90 equipment completely resolved extensive bleeding. The equipment was developed for the esophagus and it's significant to find a practitioner who is using the Halo 90. It was a long search for me. I found a physician at Stanford who had access to the equipment and was willing to try it. There is a physician at Scripps. But I found an amazing GI at USC Dr Buxbaum.
I never used sedation because the procedure is painless, but very effective.

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Just came upon info that radiation enteritis is what I have been having. It has been off and on for sometime but now has reached the point of too much to handle. Stomach pain, gas,fecal incontinence, incredibly sore butt. Have an appt with oncologist on Wed. He will most likely tell me to see a gastroenterologist. Doctors are quick to pass me off to somebody else.
Any advice in the meantime that will help besides the fiber things no dairy,etc?

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@again2

Just came upon info that radiation enteritis is what I have been having. It has been off and on for sometime but now has reached the point of too much to handle. Stomach pain, gas,fecal incontinence, incredibly sore butt. Have an appt with oncologist on Wed. He will most likely tell me to see a gastroenterologist. Doctors are quick to pass me off to somebody else.
Any advice in the meantime that will help besides the fiber things no dairy,etc?

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@again2, you might be interested in this related discussion:
- Anyone have radiation enteritis, inflammation of your small intestine?
https://connect.mayoclinic.org/discussion/radiation-enteritis/
How did the appointment with the oncologist go?

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@again2

Just came upon info that radiation enteritis is what I have been having. It has been off and on for sometime but now has reached the point of too much to handle. Stomach pain, gas,fecal incontinence, incredibly sore butt. Have an appt with oncologist on Wed. He will most likely tell me to see a gastroenterologist. Doctors are quick to pass me off to somebody else.
Any advice in the meantime that will help besides the fiber things no dairy,etc?

Jump to this post

Yes, but you need a gastroenterologist. They will perform a partial colonoscopy anoscopy or rectoscopy and document the bleeding.
This link "Treatment of chronic radiation proctopathy with radiofrequency ablation," is interesting. I had a lengthy search finding a practitioner. You have to be sure they are using the halo 90 catheter. The depth of the ablation is 0.1 to 1mm which allows for re-epililialization of the squamous cell layer. The catheter looks like the tiniest of fly swatters.

Hyperbaric oxygen therapy can also be successful. The trouble is that it's 2 hours a day for 40 sessions. Some injuries require 90 session.
There are other palliaitive ( useless from my experience) meds Rawassa and Sulfacrate.
Best wishes.

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@gently

Yes, but you need a gastroenterologist. They will perform a partial colonoscopy anoscopy or rectoscopy and document the bleeding.
This link "Treatment of chronic radiation proctopathy with radiofrequency ablation," is interesting. I had a lengthy search finding a practitioner. You have to be sure they are using the halo 90 catheter. The depth of the ablation is 0.1 to 1mm which allows for re-epililialization of the squamous cell layer. The catheter looks like the tiniest of fly swatters.

Hyperbaric oxygen therapy can also be successful. The trouble is that it's 2 hours a day for 40 sessions. Some injuries require 90 session.
There are other palliaitive ( useless from my experience) meds Rawassa and Sulfacrate.
Best wishes.

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Not prostate but cervical cancer. Radiation burned my sign mold colon causing stricture and microperforation. Severe radiation proctopathy with rectal ulcers that was getting worse despite hyperbaric oxygen (48session) , steroid and mesalamine , sucrafate enemas ended up in er with massive hemorrhage and ended up begging for a diverting colostomy. The general surgeon locally put one in and resected the sigmoid colon. I still have the radiation proctitis and large ulcer right at the anal verge . I am finally not bleeding as much (just spotting and streaking) but still painful at rectum even 6 weeks post (much better managed with fentanyl patch 25mcg). It is very likely it will be a permeant end colostomy for me ... continued hyperbaric oxygen after surgery, I just want to heal enough return to work. I am still very fatigue and it still feel weird in anus. Plus I still pass mucus (sometimes pink/ bloody mucus with blood clot/ streaking, sometimes frank blood spotting ) via rectum still and everytime I see the blood it's PTSD all over again.

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@sfok09

Not prostate but cervical cancer. Radiation burned my sign mold colon causing stricture and microperforation. Severe radiation proctopathy with rectal ulcers that was getting worse despite hyperbaric oxygen (48session) , steroid and mesalamine , sucrafate enemas ended up in er with massive hemorrhage and ended up begging for a diverting colostomy. The general surgeon locally put one in and resected the sigmoid colon. I still have the radiation proctitis and large ulcer right at the anal verge . I am finally not bleeding as much (just spotting and streaking) but still painful at rectum even 6 weeks post (much better managed with fentanyl patch 25mcg). It is very likely it will be a permeant end colostomy for me ... continued hyperbaric oxygen after surgery, I just want to heal enough return to work. I am still very fatigue and it still feel weird in anus. Plus I still pass mucus (sometimes pink/ bloody mucus with blood clot/ streaking, sometimes frank blood spotting ) via rectum still and everytime I see the blood it's PTSD all over again.

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sfok09, I'm so sorry to hear. You must have begged for the colostomy because it was so painful. The proctitis could be dealt with through radiofrequency with the halo 90 wand. It allows the regrowth of normal epithelial tissue. The ulcer is more complicated, but I've seen some amazing healing with hyperbaric oxygen after 90 sessions. I didn't experience healing myself the HBO.
I hope your energy returns soon.
Bless your struggle with some luck.

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