Update: Radiation Issues Not Gone Yet

It has been awhile since I posted any kind of update. In summary, after my initial treatment plan, I was diagnosed with radiation enteritis, radiation proctitis, and dysuria... meaning I got a little fried during my IMRT. For over two years, I followed a plan by my GI doc to limit issues with my enteritis that had caused a small bowel blockage within the first year of treatment. It was an unfortunate ride of alternating bouts of enteritis induced constipation and diarrhea. Around February of this year it seemed the cycles were getting farther apart and I was getting almost back to normal. Unfortunately I got a reminder on the 18th of this month that the damage is still there and can cause me issues as I ended up in the ER and another 2 days in the hospital with a small bowel blockage. I can tell you that out of all treatments I have had, nothing has been as bad as a nasal-gastric tube (NG) in sucking all the stomach and intestine contents back out through my nose. So now I have to pump up the regime again and go back to my adjusted life with osmotics and stool softeners to “keep things flowing” past the damaged areas. It seems to be a motility issue. I am also still on Flomax twice a day for the dysuria. I know I am one of the small percentage of guys who have a chronic radiation condition that last years after treatments.

But, with all that said, my PSA is low and T is high. For that I am thankful.

Cali - Welcome to yet another club. I, too, had some unfortunate repercussions from radiation therapy. In my case, it began as radiation enteritis, which bothered me a lot for the first 6-8 months post-treatment. Mine, fortunately, lessened after that time, so that it is now just a memory.

Later on, I also developed radiation proctitis. This was a bit more scary, as mine resulted in some rectal bleeding. It got especially scary when I had a DRE at the RO's office, and she was doing the usual hem-occult stool test. We've got blood!

Some quick treatment with the laser and all is again well.

Hope yours stays calm for a bit.

I feel for you for sure. I am still suffering perm. radiation damage myself. I underwent SRT in 2009, and it went very wrong. I too had the nasal drain thing, it was horrible. While it was going on, I wasn't allowed any liquids, not even a sip of water or ice chip. I about went out of my mind dying from thirst. When they pulled out the tube, didn't think I could take it.

Radiation is the gift that keeps on giving. Both times that I underwent major radiation over a 10 year period, it did great damage to me.

Hope you start to feel better, now and in the future

Good news Trailguy. I believe that I am starting to see a return to normal as well. I developed radiation colitis starting the second week of ART, which persisted and was confirmed by colonoscopy six months later. Then at one year (last August... everything happens in August) a mass was found in my small bowel, which was excised in October and determined to be sclerosing mesenteritis rather than the more dreaded neuroendocrine cancer.

It's more likely that the SM was the result of my first SBR forty years ago, when I had the fiendish NG tube and vacuum pump. This time instead I was on TPN (IV nutrition) for a week, but have dealt with frequent (2-4x daily) diarrhea since unless I use a powder mix named Questran with my meals.

But just lately I've been reintroducing some of the foods that I'd had to eliminate. Last night I had vanilla frozen yogurt for the first time. Guess we'll see how today goes.

Thanks for the replies guys... RobLee, darn. Never heard of SM and happy not too. Purgatory, NG tubes are purgatory! I think with the improvements of IMRT and SBRT that there is less chronic RT issues. Obviously a percentage of us on here have experienced it. Because of the issues after the first 5 sessions (which landed me in the ER), my treatment plan was redone 2x... I have 3 tattoos down the front, bottom one is 2.5 inches from the top one. They kept trying to avoid the small bowels by eliminating any pelvic lymph nodes. I assume that is what started this mess. Interesting that another well known RadOnc told me it was probably an issue with the HDR Brachy being first followed by the IMRT. Who knows. Onward... -JR

Hello CaliJr. ~

Just a note of support and encouragement, from one comrade to another …

I finished nine weeks of radiation a year ago … last summer, there was definitely residual fatigue, after the treatments were over. This summer, I went walking twice a day, and my energy seems more restored, at last.

My PSA has stayed stable, and it's evident that the radiation treatments helped me.

I hope your side effects fade into the distance. Meanwhile, keep forging ahead. You have 100% of my encouragement!

With my best,
CYCLONE ~ Iowa State University

CaliJr - sorry to hear of all the issues you are having - and hoping that the UCLA program can get the condition going in a better direction