Rectal problems following HDR and IMRT

[VN6465]

Finished HDR and IMRT a couple months ago. Since then have had difficulty with bowel movements. GI doc not much help. Colonoscopy a risk due to my age 80. Recently read about a radiation side effect called proctitis which seems to present with the symptoms I’m having. Anyone having similar experience?

[Tall_Allen]

Yes, proctitis is a common transient side effect. Probiotics may be helpful, or anusol with hydrocortisone. DO NOT have a colonoscopy now.

[VN6465 in reply to Tall_Allen]

Thanks for reply. Am taking probiotic and using Recticare which has healed a fissure but problem continues. You mentioned transient. Assume that means comes and goes? Did you have the issue and time period? Appreciate your input - would like a colonoscopy but as you said, not smart!

[Tall_Allen in reply to VN6465]

Most side effects of radiation are acute (meaning they happen soon after the therapy) and transient (they vanish after healing). At your age, healing is not as quick or as complete as in younger men. I tell guys that it's like getting a bad sunburn in there. It gets red and inflamed, capillaries may come to the surface and break, and the tissue gets easily tearable (which is why colonoscopy can do damage). Fortunately, late-term rectal side effects are very rare with the kind of radiation you had, so it isn't likely to come back.

One of the more annoying features of radiation proctitis is called "tenesmus." It feels like there's a turd stuck inside that you can't push out - and that feeling is the danger. Because the nerves in the rectum sense inflammation as pressure, that misperception makes us want to squeeze it out when in fact there is nothing in there. Bearing down causes hemorrhoids, broken blood vessels, distension and other problems. I found that just knowing tenesmus is a thing helped me ignore that feeling. I used metamucil for awhile. Also, never trust a fart.

[db1966 in reply to Tall_Allen]

I didn’t know that. Very useful for me as it reflects exactly what I have been experiencing. Thanks you

[Tall_Allen in reply to db1966]

I'm amazed that ROs don't simply hand out a one-page sheet like the one below to all primary radiation patients:

pcnrv.blogspot.com/2018/10/...

[dadzone43 in reply to Tall_Allen]

I am amazed, too.

This whole PCa adventure has demonstrated to me the reluctance of SO, RO and MO to admit to and talk about the negative effects of their treatment. They seem blinded to it. It is not their fault; it happens; they would be 'way ahead of the game to put it out on paper so that patients know it is to be expected. I could write a whole essay on my physicians' denial. They are not unique.

[Tall_Allen in reply to dadzone43]

I agree. No doctor wants to think they are doing harm. Yet there are harms in all treatments. Even active surveillance can be psychologically trying.

[Roberthale7318 in reply to Tall_Allen]

Wow...great help! Could the same symptoms occur with radiation to the spine?

[Tall_Allen in reply to Roberthale7318]

You can ask your RO for the rectal doses you received.

[Boacan in reply to Tall_Allen]

I’ve had similar symptoms from a prostatectomy without any radiation. Surgeon advised that pealing the prostate away from the rectum can cause inflammation and tenesmus. He also recommended not having a colonoscopy until at least 3 months post-op and preferably 6 months.

[timotur]

I had the same treatment about 10 months ago (see profile), but haven't run into any problems with BM's, even with SpaceOar implanted. I eat a lot of "soft" fiber, like oatmeal, kiwi, apples, and beans/lentil couple of times a week. Also, may help to stay hydrated with lots of water and get some exercise in, especially walking/running. Another thing that helped too was cutting out red meat-- that alone was a big help to keep regular through IMRT I think. Hopefully with diet/exercise things will work out.

[VN6465 in reply to timotur]

Thanks for the reply - you’re lucky

[Hidden]

I started using psyllium husk after my radiation. That fiber really holds water, so much that if you don't stop taking it in the afternoon, you could be up urinating at night (took me a while to realize what was causing my nocturia). I take it in the morning before my first meal, and then the next day's bowel movement (almost always first thing in the morning) is without any constipation.

I buy whole psyllium husk, and mix a tablespoon with about 24 oz of water. Then use a hand mixer for a few minutes to really mix it. Let it set a day, mix it again, and then add about 8 ounces of the mixture to a morning drink.

Hope that helps!

[pjoshea13]

I had radiation proctitis. It took over a year to resolve, but it does go. Many do not get it & some get over it faster. I hope that you are one of those. Don't have a colonoscopy.

Best, -Patrick

[VN6465 in reply to pjoshea13]

Thanks so much. What did you do to get rid of the problem during that year? I have no bleeding but daily BMs are a challenge as canal seems smaller and less muscle strength.

[pjoshea13 in reply to VN6465]

Mostly what I did was to discover all the public toilets in Asheville. When my wife & I drove there for lunch, our route from the parking lot to a restaurant was designed to pass by 3 or 4 of them.

All I can recommend is patience.

-Patrick

[garyi]

Find a better Gastroenterologist. It took several suppositories and other oral Rx's to vanquish my radiation proctitis.

I had a good RO working with my GI. Not much is known about Radiation Proctitis. Suggest you do a deep Google dive to read the latest treatments. Good luck!

[VN6465 in reply to garyi]

Roger that - looking fo different GI and RO as he is in denial that radiation caused the problem. Did the google dive and found bleeding to be the norm - I’ve had none! Did you do colonoscopy and how long to resolve your issue?

Thanks

[garyi]

About 8 months for symptons to end, and yes, I had a scoping about midway as symptoms were improving. Good luck!

[AlanMeyer]

I had HDR brachytherapy plus external beam radiotherapy for my PCa at age 57. Going into it I had aggravated hemorrhoids caused by a brutal digital rectal exam done by a urologist who should have been experienced at that and done better. The radiation made the hemorrhoids worse and also scarred the rectal walls. My radiation oncologist said that was a common side effect of radiation. If yours denied it then it seems to me that he's likely either dumb or dishonest and worth replacing.

If I remember correctly (it was 16 years ago) my symptoms lasted 5 or 6 months. They were ameliorated to a useful extent by using generous amounts of Preparation H (it's mostly made of petroleum jelly.) I really laid it on - which helped more than just putting in a thin layer. Sitting on a doughnut cushion when using a hard chair also helped.

All in all, I found the problem to be painful and irritating, but manageable. It did eventually go away and my treatment was successful, which was the important thing.

I agree with others that the colonoscopy is unhelpful and may well add to the total pain and irritation. I expect that the doc will look at the image produced by the tube he pushed up your rectum and see inflammation, irritation, and scarring. Then he'll suggest using Prep H, Recticare, or some other thing that you're already doing.

My one suggestion is that you try some preparations other than Recticare. You might find them to be just the same but, if you're lucky, you might find one that helps more. Use Google to search for best best proctitis treatments to get suggestions. Any of your doctors can also provide prescriptions for treatments that contain more powerful drugs than the OTC ointments. They may, or may not, be more helpful.

Best of luck with your proctitis and, especially, with your PCa treatment.

Alan

[lookout4 in reply to AlanMeyer]

"...caused by a brutal digital rectal exam done by a urologist..."

Q) ahhh, are you sure he was using his finger, lol?

[mistersafety]

Yes, I also had urgent and painful bowel movements after 43 treatments of radiation. Holy cow, for a while each time I had to go it felt like I was pooping out a nuclear submarine. Doc prescribed painkiller suppositories, which helped. Fortunately, this resolved quickly. The urgency, however, took longer to resolve, getting better slowly. Before radiation, it was like, "oh, sometime in the next 30 minutes I should take a dump." After, it was, "sometime in the next 30 seconds I need to go!" Being regular really helped but there were sometimes surprises. Fortunately, I never had to stop and go "free range" by the side of the road (can you imagine trying to explain that to law enforcement?) but there were some close calls. I agree with T_A; never trust a fart.

[Drago101 in reply to mistersafety]

Thnks for the colorful story. Yeah, feels like my skin is being cut. Was prescribed Hydrocortisone yesterday. I have noticed relief but still a bit painful. Best not to push on ur own..just let it flow naturally.

[ExPat193]

Thank you! Thank you! Thank you!

I too have been suffering with this. I had my treatments in Netherlands. Did not know what to expect and did not know if this was normal after effects or me.

Have tried all kinds of scenarios for relief. But now I have a name and can approach it with the power of knowledge

Thank you!

[MateoBeach]

To add to the mix a “gift that keeps on giving” from RT there is delayed onset radiation proctitis. After the initial “burn” to the rectal mucosa heals and forms a layer of scar tissue, as well described above, for some of us (me) enlarged and friable capillary blood vessels develop in the scar that repeatedly get inflamed and intermittently bleed. This can last for years and is uncomfortable and inconvenient though the bleeding is not severe. One way it can be resolved is by your capable doctor applying a dilute solution of Formalin to the site via anoscopy with a swab, or instilling the solution carefully for a minute or two.

An analogous situation in the urinary bladder can occur called delayed onset radiation cystitis. I was blessed with both which fortunately resolved.

[Hirsch]

I hope your symptoms go away

Some of the radiation oncologists out there mention that there is a low percentage of complications from what they do.

If you or a loved one happens to be the statistic,it is unfortunate .

My

[Hirsch]

I hope your symptoms go away

Some of the radiation oncologists out there mention that there is a low percentage of complications from what they do.

If you or a loved one happens to be the statistic,it is unfortunate .

Good luck

[j-o-h-n]

Please give us more of your info/bio.. All info is voluntary but it helps us help you and helps us too.

Thank you...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/07/2020 5:21 PM DST

[bloodyveinpoke]

Sorry about your problems. I did not have radiation, but DaVinci prostatectomy in 2007. Thought I was "home free." In the years since, I told my GP more than once that I was having occasional excruciating pain in the rectal area, and pencil thin bowel movements, and was ignored. I had been seeing an oncologist for poor or borderline blood values for years, but neither guy bothered to get PSA results. Referred myself to a gastrointestinal guy for a colonoscopy in 2019 at age 79, and cancer was discovered in the rectum. Seems it may have been developing for about 10 years. Now 80 and having all kinds of side effects from meds and worsening cancer. So in my case the colonoscopy was clearly warranted as it led to pathology report disclosing the cancer.

[tsim]

I'm about 19 months out from HDR/IMRT and can tell you that the constipation problem is fairly normal and can last on and off for a while. It's really an issue of motility, the smooth muscle of the colon/rectum may be inflamed, partially damaged, can't really perform its normal function 100%. Unless you have very hard stool, stool softeners only make things worse(at least for me) Most of the dietary things didn't have much effect either but try them anyway. What helped for me, but you have to go real easy on it, is a stimulant laxative such as Dulcolax (bisacodyl). Maybe try one 5mg before bed and see what happens. When I was really stopped up, I had to use two but never more than that. TA is right,something steroidal might help andhaving a colonoscopy would be a bad idea.

[VN6465 in reply to tsim]

Thanks for your input

[immunity1]

I understand. I have had delayed proctitis following radiation to the prostate bed (64Gy) especially but also with follow-up palliative radiation to mets in the pelvic bones (8Gy + 20 Gy). Really uncomfortable for a period of weeks especially with passing hard faeces. Anyway of making the faeces more fluid (metamucil, psyllium, lotsa fruit, veg) is helpful. Also use of suppositories during the acute phase (Ultraproc is good: local anaesthetic, plus corticosteroid in wax). Some residual discomfort and mild bleeding may remain especially if complicated with haemorrhoids. Perhaps anti-coagulation surgery if serious loss of blood.

[Sxrxrnr1 in reply to immunity1]

I recommend a bidet. Have used for 30 years since pitching once losing sear’s catalog subscription. Will lessen toilet paper irritation considerably for many, you will feel much cleaner, and certainly lessen skid marks.

[moguzzi]

As others have mentioned there is something called delayed onset radiation proctitis which showed up about a year and half after my last IMRT treatment. It was discovered by happenstance after I had a colonoscopy - a burn of the mucosal lining of the lower intestine. The gastroenterologist told me what it was and not worry too much about bleeding, unless it was very heavy. As I mentioned on this forum before, a change of diet (more fruits, etc.) helped. My RO, who was otherwise excellent, did not mention that possibility to me. She was mostly concerned about external burns. I learned about it on my own.

Although my situation is chronic, I don't find it worrisome. After my diet change I still get occasional, light bleeding. And Tall Allen is right to recommend against getting a colonoscopy now. Definitely check out the informative link he suggests. Very helpful.

[Mike58]

Just out of curiosity, did you have barrier Gel?