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.

21 thoughts on “diagnosis: radiation proctitis”

  1. Oh my goodness. I knew you were having some health issues, I wasn’t aware that you were in such distress! Glad you finally have a diganosis you can work from… Sending Big (((HUGS & Healing)))

    1. Thank you, Jeff! I know you’ve been doing a lot of healing recently, too, and am returning big hugs and healing energy to you. Let’s hope this new year will be much healthier!

  2. God, I feel your pain and your anger and your relief, all at the same time. The misdiagnosis is inexcusable. I think you should report your previous doctors – but to whom? Reminds me of the time, many years ago, my guy needed to go on prednisone for a length of time (over a year). His personality changes, his moods grew up and down so unlike him; in fact, he seemed to change in front of my eyes. I talked to his doctor about it, the one who prescribed the prednisone, and he said, “I have no idea why – nothing to do with his meds.” Then I found out from a therapist AND a minister that prednisone is known for all sorts of personality changes, including hyperactivity and depression. That knowledge helped me understand what my guy was going through, and helped him understand too. For doctors to not know this information is criminal, in my mind.
    I’m sorry you have radiation proctitis, but may the knowledge help you deal with it and recover in the best way possible. Blogging about it and sharing what you’ve gone through will most likely help others going through similar trauma.

    1. Thank you for your many kind words, Pam. It’s so good to know you understand. Letting the radiologist know my diagnosis in a letter is the next thing on my to-do list, since I have no further appointments with her. Since I will be seeing the oncologist once a year for the next few years I will be talking to him in person. They both had told me side effects from the radiation therapy are very rare. But symptoms may begin as early as several months after therapy but occasionally not until several years later. If the proctitis shows up after the radiologist is done seeing the patient it is possible she may never realize how many of her patients are affected.

      That must have been a very tough year for you and your guy, especially when his doctor dismissed your observations. I hope that’s all behind you now, and that the personality changes weren’t permanent. Our brains are so mysterious and how drugs affect them is so poorly understood. Doctors should pay far more attention to the reported side effects of their chosen drugs and treatments. Each human has her own unique biochemistry and I suspect there is endless variety in our responses to the meds we are urged to take.

      1. Yes, there are an endless variety in diseases and how the body reacts to the disease and the treatment. My guy is great – this all happened two decades ago, and I made him change doctors! I think it’s important that we remind doctors that patients are people, not diseases. Listen to them!

          1. That is a scary article – and quite informative and necessary. Thanks for sharing. As far as the Internet knowing what’s on our mind – ye gad, even scarier!! 😉

  3. Dear Barbara I’m so sorry to learn what you’ve been going through. Thank goodness Tim found a doctor who listened-to-you-and-heard-you and followed through with a colonoscopy that gave you a diagnosis. Sending you (((healing hugs))) . love rosie

    1. Thank you, Rosie, it was so nice to hear from you again! I do miss your blog and often wonder what you’ve been up to these days. I am very lucky to have Tim in my corner, he’s a problem solver extraordinaire. Much love and many *hugs* to you.

  4. I’m sorry you’ve been going through all of this, Barbara. Doctors can be so dismissive, especially of women and their symptoms. I thought by now we would be past all of that. I’m so glad Tim found a good doctor for you and that you’ve have both acknowledgement and validation. Hugs.

    1. Thank you, Robin. I think the fact that the radiologist was a woman was extra disappointing for me because I must have expected her to be less dismissive on some level. That being said, my male primary care physician is the most attentive and understanding doctor I’ve ever had. Not sure why I thought an all-female group of gastroenterologists would be a good bet but it was!

  5. I hadn’t realised you’d been going through so much again, Barbara. I’m so sorry. That radiologist needs disciplining by a board of superiors if such a thing exists – fobbing you off with IBS after all the likelihood of the real reason for your symptoms, is just appalling and to me, that sounds like laziness on her part.

    I’m glad you’ve found a good team, though, and have a proper diagnosis. That has to help you feel better about things.

    I had a short spell (6 days) in hospital in November (for a bad throat and chest infection) and while there they put me on new medication that had side effects that made my throat and chest worse. I’m off them now, but really – prescribing something with the most common side effect of hoarseness and cough? I have it in mind to complain but I’d have so many complaints about that hospital that I wouldn’t know where to start!

    1. Sorry to hear you had to be in the hospital for so long, Val! (Six days sounds like an eternity to me.) It’s hard to understand why so many treatments wind up making us feel worse. Sigh… Drug and treatment side effects are such a big problem. Unfortunately when we do complain our voices are often dismissed or minimized.

      I do feel better with the right diagnosis, even if I still have to deal with some pain and lots of diet restrictions. I’ve lost 20 lbs since November which is a good thing as I am overweight. There are many now irritating foods I do miss terribly!

      1. Can you take something for the pain? I hope you find a good way to manage it.

        I understand the diet restrictions, as well as a lot of food allergies and intolerances I’m now having to lower my cholesterol (and BP) so am on a low-fat, low salt and high fruit and veg diet, which on top of everything else is taking some getting used to. It’s a pain, all this, isn’t it! (Also a learning process.)

        1. The pain is distracting but it comes and goes and so far hasn’t slowed me down much. Not like the migraines which used to knock me off my feet!

          I’ve been gluten and lactose intolerant for as long as I can remember so I’m used to watching what I eat. But now I have to avoid onions, broccoli, Brussels sprouts, cabbage and apples! (Among other things.) Concentrating on gluten-free bone broth, greens, tomatoes, carrots, oranges and spinach which all seem to sit well. It is a pain! Eating shouldn’t require so much vigilance.

          1. I’m actually eating the reverse of your current diet – increasing onion, brussels sprouts (sprouts which I’ve found I actually like after a lifetime of hating them!), and having to avoid oranges and spinach – I keep trying but can’t cope with them at the moment, too acidic or astringent or something. Is it the gas-creating properties of the onion/cabbage group that you need to avoid? Presumably a lot of legumes/pulses have the same effect?

          2. I stopped eating legumes quite a while ago for that reason. Have you heard of a low-FODMAP diet? For now I’m avoiding foods with high amounts of FODMAPs.

            “FODMAPs may cause digestive discomfort in people who are hypersensitive to luminal distension, but they do not cause intestinal inflammation. In fact, naturally occurring FODMAPs help avert digestive discomfort because they produce beneficial alterations in the gut flora. They are not the cause of these disorders, but a low-FODMAP diet, restricting FODMAPs, might help to improve short-term digestive symptoms in adults with irritable bowel syndrome (IBS) and other functional gastrointestinal disorders (FGID). Avoiding FODMAPs long-term can have a detrimental impact on the gut microbiota and metabolome.” ~ Wikipedia

            Hopefully I won’t need to eat this way forever. It’s helping with symptoms but not the cause. Now that medication is slowing down my intestines I might be able to add some items back in the future, though I have my doubts. (Everything was going right through me. I’m still losing weight so I’m not sure how much my intestines are absorbing even if they are slowing down.)

            I wish you success with your diet! Sounds pretty good to me!

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