Looking for tips on managing radiation-induced proctitis

Posted by rtv @rtv, Dec 17, 2023

Looking for tips from anyone who has experienced bowel incontinence caused by radiation induced proctitis. My husband was diagnosed with radiation induced proctitis 2 years post-radiation therapy. He had a bleeding rectal ulcer that was treated with twice daily sucralfate enemas for 8 weeks. The bleeding has stopped but he still has occasional fecal incontinence.

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chippydoo | @chippydoo | 2 days ago

Radiation Proctitis and Enteritis are two different conditions that often present together. Each has it own treatment. My proctitis was treated with cauterization which worked well and Enteritis was treated with 90 days of Mesalamine enemas. Teed up the healing process and slowly getting back to normal. Diet helps as rough stuff tends to cause bleeding prior to being treated. It's been a long 15 months post radiation.

Roxy2017 | @roxy2017 | 2 days ago

Thanks to all three of you for your suggestion. I should have mentioned that I also have and have had for years microscopic colitis which I have learned to control with diet and immodium.

jime51 | @jime51 | 2 days ago

In reply to @lsk1000 "I’d look into Hyperbaric Oxygen. It seems to be effective with a whole host of ailments." + (show)

@lsk1000 I'm 20 treatments in. Bleeding has stopped but bowel urgency, frequency, and flatulence haven't seen much improvement yet. I'm hoping to complete 30-40 to be sure I've given it every chance.

lsk1000 | @lsk1000 | 2 days ago

I hope it works for you. I wasn’t so lucky. After 72 treatments for acute hemorrhaging bladder I came up empty. Supposedly it helps 90% of those cases, but I guess I’m special. s/

edtrucks | @edtrucks | 1 day ago

Question for those experiencing proctitis post radiation, one two years after. Did you have spaceOAR or similar hydrogel applied prior to radiation? I am a year and a half post radiation with no spaceOAR and was wondering what to expect.

ededed | @ededed | 16 hours ago

In reply to @lsk1000 "I hope it works for you. I wasn’t so lucky. After 72 treatments for acute hemorrhaging..." + (show)

@lsk1000 I have found that urgency is made much worse by some foods. Foods with palm oil or palm kernel, and cured meats such as ham, bacon, salami etc are triggers for my urgency. It took a while of keeping a food diary for me to figure out some of what was happening..

jime51 | @jime51 | 11 hours ago

In reply to @edtrucks "Question for those experiencing proctitis post radiation, one two years after. Did you have spaceOAR or..." + (show)

@edtrucks SpaceOar placed about six weeks before 44 IMRT treatments. Didn't prevent radiation proctitis which started with diarrhea during treatment and continues 15 months later with bowel urgency and frequency.

lhs38 | @lhs38 | 10 hours ago

Only at Mayo did I get some relief. Previously followed recommended course. Sucralfate, anti biotics, APC (I believe done incorrectly by GI doc not sufficiently experienced in its use), hyperbaric (50 sessions with no benefit and physician acknowledged 25 % get no benefit). Mayo accepted me as patient only after these treatments completed. APC done by experienced GI doc who also warned that APC and formalin are targeted treatments not interchangable. Two sessions, one with each treatment although warned in advance that a single APC may not be sufficient. Although never recommended, on my own I pursued implantation of Watchman to also allow getting off eliquis. I think that was important. Current status no bleeding but continue with urgency which is only partially controlled because of colon damage.