I’m posting this in the hopes someone has had the same experience as me and had success solving or helping it.
After my radiation and chemo finished 1 year and 3 months ago I noticed blood in my bowel movements. It got worse over time. I was sent to a gastro doc who did a colonoscopy and found I had radiation colitis and radiation Proctitis. He cauterized the visible blood vessels but it did not help with the bleeding. Shortly after I was diagnosed with severe iron deficiency anemia due to blood loss. I am now 30% of the way through hyperbaric oxygen therapy but so far not noticing a difference. The gastro doc says if hyperbaric doesn’t work we can try cauterizing again but beyond that it gets pretty scary with surgery to remove my colon.
In addition to my bowels, my vagina has the same bleeding problem. I’ve been using my dialator as prescribed but it makes me bleed. When I even attempt very gentle, lots of lube intercourse my bed looks like a crime scene. I have to put towels down because of all the blood. It’s too painful for me to do much.
My radiation oncologist keeps saying I was really sensitive to radiation. I have no idea what that means. Has anyone else gone through this and found something that helps? I guess anything is better than cancer but a lifetime of blood transfusions and no sex isn’t very fun.
Hi
I am sorry that you are continuing to have problems post radiation. Have you had a recent MRI scan? I have had various tests for post radiation problems with the bowel following which they have requested an MRI to hopefully get a better look at what is going on and wonder if this could be something that may also benefit you. I haven't any other advice unfortunately but do hope things will soon improve for you x
Hi Weepingwillow - so good to hear from you! I hope all is well. I had a PET scan which showed no cancer but did see the damage to my intestines. My gastro doc got a good look at my bowels during the colonoscopy and said it's definitely radiation damage. What were they looking for with your MRI? I have a follow up next month so can definitely ask for one if there's something we should be looking for.
So sorry to hear this. No advice, but a big hug. I really hope your therapy will help heal some of the damage
Nice to speak to you too, they are wanting to MRI specifically the small bowel to look and see if the damage can be treated. I do feel however it's something that will he just classified as radiation damage too. I'm pleased your scans are showing no cancer but do hope they can sort something out for you with the bleeding. The changes post radiation certainly do take some getting used too x
Thanks so much for the kind words Izzzy! I appreciate it. Looks like you and I had almost the exact same treatment but mine ended a year before yours.
Hi
If you are in the UK, you might want to consider contacting the pelvic radiation disease association: https://www.prda.org.uk/
The following link might be particularly relevant for your intestinal problems:
http://www.prda.org.uk/pelvic-radiation-disease-documents-and-articles/
x
Thank you for the link Jazza! I am in the US but still found the info helpful.
I, too, was told I was sensitive to radiation. In reality, I think I was over-radiated, b/c doctors have the same protocol for the stage you are in. I have had bowel problems from the radiation--basically I now have IBS. This means I deal with diarrhea, stomach cramps, throwing up, etc...I've found that taking an SBO probiotic helps (soil based organism probiotic). But, I cannot take the probiotic regularly, as that presents problems, too.
As for vaginal bleeding, I am 2+ years post-treatment, and I sometimes bleed. Not "crime scene" level, but I do spot still. You should mention this to your doctor, of course.
Hang in there. I always tell friends the "cure" seems worse than the disease sometimes!
I, too, was told I was sensitive to radiation. In reality, I think I was over-radiated, b/c doctors have the same protocol for the stage you are in. I have had bowel problems from the radiation--basically I now have IBS. This means I deal with diarrhea, stomach cramps, throwing up, etc...I've found that taking an SBO probiotic helps (soil based organism probiotic). But, I cannot take the probiotic regularly, as that presents problems, too.
As for vaginal bleeding, I am 2+ years post-treatment, and I sometimes bleed. Not "crime scene" level, but I do spot still. You should mention this to your doctor, of course.
Hang in there. I always tell friends the "cure" seems worse than the disease sometimes!
Thanks Dog Lover - sounds like you and I are in the same boat....both with loving dogs and our side effects!! I have been taking a daily probiotic but I will look for the soil based one you mentioned to see if that helps. I too have IBS like symptoms. Sometimes the pain is very intense and then I have such bad bleeding I can't always control it, which is so embarrassing. I'm about to finish up 40 hyperbaric sessions, which I don't think did much of anything, unfortunately.
As to the cure, yes! I often have to remind myself that I would have chopped off my legs to survive cancer so this is better than the alternative. But I agree with you on not tailoring the treatment. I had lost 25% of my body weight (and I was already thin) so they had to stop treatment because they didn't think I would survive. But a week later they were back at it. My hair fell out from malnutrition. It wasn't fun. But at no point did they deviate from the prescribed treatment. Hopefully it was needed to kill the cancer, tho.
I'll let you know if I find anything that helps, and please let me know if you do as well!
Hi Slic,
long time no talk! We went through treatment around the same time. I'm sorry you are going through that. I had bleeding recently as well, not lots but enough to get my attention. My doctors were not worries but sent me to see a bowel surgeon. He did a colonoscopy and found I have radiation proctitis. The bleeding was never a lot to begin with but after the procedure was done I haven't seen any blood. He mentioned it can get worse for some women as the years go by and that I might need to have this same procedure done again every year. I also do have a little bit of IBS after treatment. Nothing too bad and to be honest, I feel it's getting better as the time goes by. I also identified some foods that were aggravating the issue and stopped eating or reduced the amount.
As for the dilator, I think here in Australia we have a slightly different approach. I think from memory, I started using the dilators in the second week of treatment. I think because we start earlier here that I hardly had any problems. I still use the dilator regularly twice a week. I was also given some pelvic exercises that are meant to help. Did you get those from your doctors? I think it would be worth a try.
Sending you hugs xx
So great to hear from you Ladybug! I am very glad to hear you are doing well. I was also diagnosed with radiation Proctitis and radiation colitis. Was the procedure you had done a cauterizing of the blood vessels? I tried this once and it didn't work but may try it again. What foods did you find cause issues? I'm trying to figure out if there's anything that triggers mine.
I'm so glad they're smart about dialators in AUS. Here in the US I don't feel like this is much of a focus. At least it wasn't for me.
