Looking for tips on managing Radiation-induced proctitis

I completed radiation 6 months ago and now, out of the blue, I've experienced some pretty significant rectal bleeding. (Everything else is good -PSA undetectable and just a little fatigue from the ADT.) Im told this is not unexpected,
yet it is a bit startling. Just looking for others with similar experience.

@jcmacqueen
I have to be careful here and want you to know this information came from my R/O and team at UFHPTI.

They would not do the radiation treatments unless I had had a colonoscopy within a year. The reason is that the radiation can cause damage to your colon and having a colonoscopy after radiation was not advised.

I just wanted to pass this along and suggest you talk to your colonoscopy specialist about this.

I think your Space/Oar movement may have added (but just a feeling) to your colon being radiation. The time frame for bleeding told to me was not until some time had passed. What I was told was that the small blood vessels can be damaged during radiation in colon. They will die and new vessels are formed. When the new vessels are formed they are vulnerable and can be easily damaged and bleeding will occur.

Thus, the extended time frame for this is not right after radiation but later on. The new blood vessels will eventually become stronger, and the bleeding stops but this takes time. Again, this is not my information but from my radiation treatment team.

Please check on having a colonoscopy after you have had radiation and also you are having bleeding. If the colonoscopy is to address the bleeding probably you have told them about radiation, and they are trying to get the bleeding stopped. But I mentioned is just as a precaution.
GOOD LUCK!!

@jcmacqueen
After I posted my reply I was thinking maybe they are doing colonoscopy to fix the bleeding.

I was just (prior post) passing on the concerned my R/O had with doing colonoscopies after radiation treatments as colon will have some damage and easily injured. But you needed to address the bleeding not just a routine colonoscopy.

Did you have proton or photon radiation? Did you have the high dose radiation (short term treatments) or the low dose long term treatments?

Although still going through a lot of studies and different opinions the photon radiation since it passes through the entire body versus proton stopping at predetermined spot and not passing through body has been shown to have diferent radiation damage to colon and other organs tissues.

My PCP is really doing a lot of reearch on this and many studies are looking at if Space/Oar is really justified to help reduce radiation damage to colon. He said also looking at the practice of drinking water prior to radiation to move bladder away from prostrate.

What he is saying is the study is to make getting the treatments the best for patients and to ensure the additional precautions that are done now are showing long term benefts. I think those studies are good but for me I wanted to take as much precautions as I could not so I chose proton not photon radiation, get the Space/Oar and drink the water.

No, I was one of the freaks who had the symptoms mostly emerge a year later.

But the complication in my case is that the metastasis compressed my spinal cord and left me paraplegic in 2021. I've since recovered a lot of my mobility and sensation below the ribs (not all of it). So it's possible that I just couldn't feel the proctitis and cystitis in 2022, and became aware of it in 2023 as sensation improved.

Folks, the probability of experiencing some level of rectal bleeding, either shorter or longer term, especially with SBRT proton therapy (5 Sessions) even with gel spacer, is a harsh reality that is not typically a topic of conversation unless the patient happens to bring up the subject during consults. The potential for bleeding is not a reason to avoid this treatment protocol - but it is definitely up to the patient to self-educate on the subject and to not think you are going to beat the odds on the bleeding issue. My bleeding started 12 months following treatment (streaks of blood on surface of stool and periodically just a small amount of fresh blood after a bowel movement). If this occurs with you, request a CBC blood test to see if your hemoglobin level has dropped from baseline. If so, it's probably a radiation induced situation that will not remedy itself but can be addressed by a gastro doctor. It's just all a part of living with the outcomes of any particular prostate treatment protocol we select. Good luck.

thanks for this I am experiencing the same symptons and in the same time frame . It came on slow and I am beginning to get it,,,,so as we all know it's part of the drill isn't it ? It could be worse i am going to use Kegels to help control some aspects of it. And as a cyclist i know some of it is hard covered saddles. I was informed that recumbent indoor bikes are much easier on one and much more effective for some other ne's like thigh toning and alternate strength training. thanks for the information

@jcmacqueen
Did your R/O advise about rectal bleeding?
My R/O and the information provided to me stated that the radiation can damage your rectum and cause bleeding. I was advised that the small blood vessels can be damaged and when knew vessels form they are very prone to bleeding.

Constipation and hard stools can add to it. The vessels I was told would eventually mature and not be so prone to bleeding. However, was told the bleeding would be more like noticing it on toilet paper, seen in feces, or notice in toilet.

I think you say yours is significant bleeding. I would check with your R/O or whomever did your radiation and let them know about the significant bleeding.

Did you have high dose or low dose? My PCP says the high dose (stronger radiation but less treatments) can lead to more significant side affects for some. When you had your radiation did you have the Space/Oar? This was a gel injected to move your rectum away from prostate to help limit radiation damage to it. If you did not have it down it could have lead to more damage but this is something you should discuss with your R/O.

I did have some minor bleeding several months after radiation stopped. It has gone away now. I had proton radiation with Space/Oar and 30 rounds (not the hight dose regiment) in May/June/July of 2023.

@jc76 i completed my 5-treatment SBRT last Monday and noticed a little blood on toilet paper yesterday and this morning. I didn't have Space OAR; my oncologist said I didn't need it because I had gold seeds (fiducial markers) implanted on my prostate for MRI-Guided radiation planning. Your minor bleeding was several months after radiation stopped; did it get a little worse before it went away? My oncologist said my immediate side effects will peak 3 or 4 weeks after my last treatment. On my 4th week after last radiation, I will be on a cruise so I am a bit worried if my minor bleeding now will get much worse at that point.