Post-Salvage Radiation GI side effects?

[dans_journey]

I'm seeking insights on what others may have experienced after salvage radiation therapy when it comes to their gastrointestinal functions.

By way of background, I had a robotic prostatectomy in 2011 and it failed. Last summer I had 35 salvage radiation sessions to the prostate bed only, ending on 27 August 2022. I was also give a concurrent six-month does of Eligard on 3 May 2022.

I was doing pretty well after the radiation through the end of 2022. But last month, I've noticed some changes in my gastrointestinal (GI) system, and I'm wondering if they're related to the radiation. There are two areas of concern.

First, I seem to have more gas that before the radiation regardless of anything that I'm eating. Further, when I go to pass gas, very little effort is needed to purge it from my rectum. The gas almost slips out on its own sometimes. That concerns me about rectal control issues coming down the road.

Second, I'm having more bowel movements each day. I used to be a one-and-done kind of guy, with a regular bowel movement every morning. Now, there are days where I have 2-4 movements throughout the day, some with a bit of urgency behind them.

I'll be asking my medical team their thoughts, but I'm curious if anyone has had a similar experience.

Thanks in advance!

[Hidden]

Yes on the urgency for me. Its like my early warning system is damaged.

I also drink 1 tall glass of water with 2 tablespoons of Metamucil each morning otherwise everything is a little too soft.

[dans_journey in reply to Hidden]

Thanks for sharing your experience. Stools are pretty normal for me so far. Some tend to be a little on the soft side, and no diarrhea.

[PSAed]

Yes, you have described a near identical situation to mine, in fact I have been prescribed Nexium by my GP to try alleviate chest pain I get when exercising. The severe chest pains I get while exercising force me to stop and attempt to "bring up " / belch the gas/wind. When eventually I do manage to "belch" ALL the trapped gas the relief is instant and I can resume exercising. The medication helps but it is not a solution to my problem. Ditto on the number of bowel movements . I would be very grateful if you would post your findings after your consultation with your medical team.

I do not believe my issues are CVD,I realise the symptoms can be similar.Thank you for posting.

I had 39 Radiation fractions and two years Lupron, now trying to lose all the weight I gained ...and belch my way to fitness! LOL

[dans_journey in reply to PSAed]

Thanks for sharing. I haven't had the gas try to come out from the other end yet. Fortunately, my weight stayed stable (still too much and needs to come down). All the best to you.

[chickgreen in reply to PSAed]

I get the gas coming up. It can be really disconcerting, and I interpret it as being nauseous.

[MSTI]

Welcome to the radiation proctitis. My onco told me that everything has it's price.

He should have told me that before radiation procedure.

Thanks to the HU my anxiety didn't last too long (until meeting with onco).

Take care.

[dans_journey in reply to MSTI]

Thanks. Yeah, my RO forewarned me about it, but I kind of expected the onset to be further down the road. All the best to you.

[John54321]

Similar for me also and was diagnosed with radiation proctitis. I am not sure you have the same without a diagnosis by your RO of course. I had about 3 months of it after 25 Fractions of External beam. My RO put me on pentoxifylline and Vitamin E which seems to have cleared it up (there are some studies out there for that combo). It has been about 3 months since it was cleared up but I do not have the same GI functions as I did before RO but close. Take care and I hope you symptoms abate soon.

[dans_journey in reply to John54321]

Thanks for sharing, John. It's good to know that there are options to abate the symptoms and that it may subside to a tolerable level. Be well!

[fishrocky]

My story is is close to yours...I had 40 Radiation treatments with 6 months of Lupron + Casadex...normal bowel movements in morning...my problem is only when I run with the extra 20 pounds I put on...I know where every bathroom is within a 5 mile radius. I can run 1-2 miles before I have to GO...then again after another 3-4 miles. I'm thinking I have Radiation Proctitis? any thoughts?

[dans_journey in reply to fishrocky]

Thanks for sharing. Yeah. I was on a recent road trip and kept a close eye on signs for rest stops, truck stops, or even just stores that I could pop into. A few came in handy along the way. As far as the radiation proctitis is concerned, I'd talk to your medical team and see what they say, but I'm coming to the conclusion that mine may be just that. Be well!

[Gunner2017]

Our bio stats are similar, although I jumped on SRT early, finishing about 7 years ago. Little or no issues until this past year or so. No more “one and done”, usually 2-3 times to vacate bowels, no longer firm or solid and seemingly less ability to push.

I have the same concerns about whether my rectum functions have been affected. But I haven’t had the urgency worries, yet..

[dans_journey in reply to Gunner2017]

Thanks for sharing your story. In my research, I kinda thought your experience was the norm: that the onset wasn't until years after the radiation. One of the reasons I delayed SRT was to avoid the chances of these quality of life-impacting radiation side effects for as long as possible, while still having a shot at knocking down the cancer. It's all a crapshoot, and time will tell whether I made the right choice. Thanks again.

[Tally111]

Youve just taken my exact experience out of my mouth. RP followed by Radiation some 3 years ago and its exactly the same for me.

[dans_journey in reply to Tally111]

Thanks for sharing. If you don't mind me asking, how long after the radiation did your symptoms start? I was expecting it to be in the 3-5 years range based on my research, not 5 months. Take care.

[Tally111 in reply to dans_journey]

Started about six to eight months after radiation in a milder form, today there are no chest constrictions but gas, pelvic pain and three to four bowel movements a day and an occasional bout of hematuria.

[dans_journey in reply to Tally111]

Thanks!

[MGBman]

I had 32 external beam radiation treatments in 2015. Ended up in hospital with massive cramping, obstructed bowel and anything I ate turned to something resembling sand. Eventually healed but I had small bleeds for a yr or so but they too have stopped. Stools are generally good. What hasn’t stopped is that eight yrs later I have to be careful about farting as it can turn into a ‘shart’ (ie some mucous spurts out). Doc says that is normal after radiation.

[dans_journey in reply to MGBman]

Thanks for sharing. I hope to avoid your experience! Ouch. I can relate to the fart/shart situation, although I haven't had any mucus (or more) yet. Just the sensation that it may be a fart with a bonus. My stools have generally been solid to like a soft clay rope; thankfully, no diarrhea. Be well!

[Hidden]

Any solid Gastroenterologist will tell you that 3-4 soft BMs are better than one a day; especially if you want to loose weight!

BTW, 118 seeds and 25 sessions of IMRT in 2003. Good luck.

GD

[dans_journey in reply to Hidden]

Thanks. If I'm home, 3-4 times per day isn't much more than a nuisance. But I like to get out to places where toilets are few and far between, and that's where I'm concerned.

[Hidden in reply to dans_journey]

I understand. It’s takes planning, just like anyone who has had a Gall Bladder removed or frequent urination. Don’t think I can help you except I have gone over the side of a boat, dug a cat hole in a field, etc. always carry toilet paper with you. Good luck.

[dans_journey in reply to Hidden]

Yeah. I had my gall bladder removed in 1995 and, luckily, things settled down back to a normal routine within a year of the surgery. I've kept toilet paper in the car as a matter of routine for years now (Boy Scout: Be Prepared 😀). Last month, I was in Death Valley and really needed to go, but there wasn't anything to hide behind to pop an emergency squat in a relatively high traffic area, and I was able to make it back to my hotel room in time. We all learn to adapt, I guess. Thanks again for your insights!

[lithocam]

Very similar story. 33 sessions of EBRT following RP, 2 1/2 years of ADT (Lupron) combined with 1 year of Casodex in the first year. I had soft stools, mild diarrhea and lots of urgency that persisted for a year and a half fallowing the radiation. My MO never really admitted there was a connection, but suggested Imodium, which I took whenever things got bad. Eventually it gradually cleared up, although it was kind of debilitating at the time. I never felt secure leaving the house. Stools have since hardened up, back to normal levels, but the urgency is still there.

[dans_journey in reply to lithocam]

Thanks for sharing your experience. So far, my stools have been normal to on the soft side; no diarrhea. I'm glad that it cleared up for you over time. I know right now, I'm being a bit overly cautious leaving the house for the same reasons. In the last two weeks, I've had to make an "emergency" stop at a store 2 or 3 times. It does make you nervous when you're out and about. Thanks again and be well!

[lithocam in reply to dans_journey]

👍

[Ab75]

I have the same gas issue. I will be two years out from srt in July. I usually have four bowels movements a day mainly just to get rid of the gas. My psa is less than .02 hopefully it stays at that reading.

[dans_journey]

Thanks for sharing. Yeah, the gas issue wasn't something that I was expecting. I went for a baseline post-radiation PSA test in November (3 months after treatment ended), and it came back at 0.05 ng/mL. I go again next month and we'll see what that PSA level is.

[lakeheadguy]

Radiation proctitis can be managed but not cured. My PSA was 14 and a biopsy confirmed prostate cancer. In the spring of 2016, I had 2 treatments of hormone therapy and 37 radiation treatments. Radiation proctitis can occur any time up to 10 years post treatment.

My GI doctor found radiation damage to both large and small intestines: dead areas discovered 5 years post radiation.

It all manifested with ribbon feces. Then annus discharge (yellow liquid). Stomach gurgles.

Sometimes the intestinal gas release small feces plug before air is released. Originally, I had BM once daily, then twice daily (a.m. and p.m.) Now I have BMs when nature calls.

Here's how I manage.

Baby wipes after BM.

My Gi suggested MORE FIBRE. I take Metamucil twice daily (a.m. and p.m.) I also eat more good fiber.

I take Align dual probiotics (pre and pro) once daily in the morning. It is important to adjust the GI bacteria.

In the evening I have an Epsom salts sitz bath.

Radiation proctitis can great a foul odour. The daily regiment keeps the smell in check.

It is important NOT to delay BM when the urge happens, as annus leakage will occur resulting in a foul odour.

So far all is under control. I hope this helps.

[dans_journey in reply to lakeheadguy]

Wow. I'm sorry that you're going through all of that, but thanks for sharing both this and your post about diet. The tip about eating nuts hit home, as I had been munching on a bag of pistachios over the last week, and I think they did irritate my system. After I stopped eating them, things have returned to a more normal state for me. Still, there is some residual irritation but far more tolerable and manageable. Thanks again.

[lakeheadguy]

Forgot to mention diet.

Eat soluble fiber not insoluble fiber.

healthfully.com/416202-diet...

Avoid ruffage, such as nuts, lettuce as ruffage can scrape intestines and is hard to digest.

My system tolerates 1/4 cup of lettuce. Any amount in excess causes problems.

Foods to avoid during and AFTER radiation treatment.

mrmed.in/health-library/can...

My solution what to what NOT to eat.

Use a food diary, itemize what was eaten and possibly quantity.

Monitor GI reaction. Note when problems occur. Remove offending food from diet.

Add offending food back 1 food at a time, note GI reaction.

Stop eating foods that cause problems, make a listing offending foods.

[garyjp9]

My GI issues changed for the worse about 14 months after 39 IMRT treatments. Like others here, now having multiple BMs most days, never seeming to fully empty the bowel.

[adam1967adam]

Da, i ja moram na wc 2-3 puta u toku dana, ovisi o količini hrane koju unesem u organizam. Imao sam gleason 7, 4+3, 3 pozitivna limfna čvora. Imao sam pomoćno zračenje i na trećoj sam godini ADT-a. PSA 0.03.