Looking for tips on managing Radiation-induced proctitis

Thanks! I'm having a colonoscopy on 1/30 and they have capability with a laser to treat any irregularities. I had colon cancer 9 years ago, so partially it is out of an abundance of caution, but this has all the textbook markings of proctitis. As they say, misery loves company. LOL Just good to know it isn't just me. Thanks again

@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.

They did use the OAR spacer fel, but it slipped around out of position and thus was less effective. I had been advised of the potential for bleeding but I was concerned that it had been 6 months since treatment. I was told that time frame would not be unexpected. I'm having a colonoscopy next month that can offer some laser treatment if advised. Constipation may have been the culprit and we are correcting that. Thanks!

@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!!

I had a colonoscopy a little over 1½ years after radiation. Because I have stage 4 cancer, the doctor (proctologist?) scheduled an appointment with me beforehand to make sure I was up for it, but had no qualms after we talked. The colonoscopy confirmed that I have some (probably permanent) radiation proctitis, in addition to the radiation cystitis, but the proctitis has almost no impact on my day-to-day life other than occasional burning or mild stabbing pains.

I appreciate your concern and follow up. My treatment has all been with Mayo and my R/O has recommended the colonoscopy to verify the scope of any damage and the process has the ability to repair any abnormalities if warranted. The fact that I had colon cancer 9 years ago is not suspected to be involved, but out of an abundance of caution is wanting to be ruled out.

@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.

That's the thing: you choose what's best right now, not what might work in the future. There's also a huge benefit to not having to travel a long distance for daily radiation therapy.

In my case, I already knew that the cancer had spread to my spine, so pin-point accuracy wasn't the goal: we wanted to fricasee my whole prostate, and if there was any undetected local spread, it wouldn't hurt if that got lightly braised as well. So (medium-accuracy) SBRT "CyberKnife" photon therapy would probably have been the best choice for me even if proton had been available in Ontario then.

I'm just lucky that the top clinics in the field have shifted to a so-called "curative" approach, treating stage-4 oligometastatic prostate cancer aggressively rather than just patting my hand and saying "It's too late; we'll do our best to keep you comfortable for your few remaining years" as I might have heard a decade ago (or even less), and as some people still hear outside of specialised cancer centres.

I also have stage 4 cancer. I'm trying to gather information about non-invasive, non-steroid treatments for radiation proctitis. As for your symptoms, did you see a gradual decline in the burning and mild stabbing pains. Also, is there anything specific that you did by way of intervention: diet, medication, nutritional supplements, other? Thanks

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.