diagnosis: radiation proctitis

Radiation proctitis (and the related radiation colitis) is inflammation and damage to the lower parts of the colon after exposure to x-rays or other ionizing radiation as a part of radiation therapy.

In January and February of 2018 I had three radiation treatments for endometrial cancer, following a hysterectomy. In July 2018 I began having distressing gastrointestinal symptoms which kept getting worse for the next 18 months. Now that I finally have a diagnosis I decided to create this narrative to keep track of how it all unfolded.

At first I made no connection between my symptoms and the treatment, assuming I had developed the irritable bowel syndrome that seems to run in my family. Dietary changes brought some relief at first but things kept getting worse.

In June of 2019 I described all my symptoms to the radiologist who had treated me but she dismissed my concerns, she said it sounded like irritable bowel syndrome that was made worse by the emotional stress of having cancer. Not anything related to the radiation therapy. I’m still angry about this.

In August of 2019 I saw my oncologist who agreed with the radiologist. Meanwhile I kept eliminating foods from my diet and looked into stress management. No signs of cancer returning but could worrying about the possibility really be causing all this? If I was worried it was definitely subconscious.

Early in November 2019 granddaughter Katherine came to visit us for three wonderful days. We had so much fun with her! But on the last day our visit was cut short when I had a very painful attack of ischemic colitis which landed me in the emergency department, getting all kinds of tests and a shot of morphine. It took me two weeks to recover, although the remaining gastrointestinal symptoms were worse than ever.

Tim spent some time searching for a new gastroenterologist and found an all-female practice. I took a chance and am so pleased with my new doctor and her APRN. They listened to my concerns!

A colonoscopy was scheduled for December 18 and we made it to the clinic driving through an ice storm. When I woke up afterwards the doctor told me my intestines were definitely damaged from the radiation. Physical evidence. Tears of relief ran down my cheeks, not for the news, but for feeling validated. It wasn’t psychosomatic.

On January 3, 2020, on my follow-up appointment with the APRN, I received the official diagnosis, radiation proctosis. I also have radiation colitis on the other side of my pelvis, where the small intestine joins the large intestine. It’s permanent. It’s a relief to know I’m not crazy and my focus is shifting from trying to “cure” my symptoms but now to finding ways to manage and live with them. I’ve started one med which has helped me enough to make a trip to the grocery store possible. (I hadn’t been out of the house, except for medical appointments, for two months!)

Another med the insurance company won’t cover. Still waiting to see what, if any, substitute can be made. The strategy is to reduce the inflammation as much as possible.

My goal is to take a walk in the woods one of these days. And to have supper at the beach with my gull friend this summer.