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Posted 11/12/2018 12:35 PM (GMT 0)
I'm asking for my husband. It's been 15 months out from EBRT and he is having a lot of problems with incontinance, blood in urine, clots, burning. Does this get any better with time. He mentioned these to urologist on his last visit and dr. didn't seem concerned at this time. Thanks for any insight.
Posted 11/12/2018 3:03 PM (GMT 0)
Welcome to HW and sorry you need to be here.

This is unusual for RT, but does happen. It can take a long time for this kind of thing to heal (years). I developed urgency and bowel issues post RT. After six years, it's not back to what it was, but it's better.

If SEs don't get better in a few months, get in the URO's face again.
Andrew
Posted 11/12/2018 4:33 PM (GMT 0)
Thank you for your response
Posted 11/12/2018 4:51 PM (GMT 0)
I had a slight amount of blood in my stool for almost 3 years and then it went away. I think your husband's situation will get better.

Thanks
Paul
Posted 11/12/2018 5:08 PM (GMT 0)
There have been guys that have had issues similar to your husband's, but it's certainly not typical--particularly at 15 months. I'm wondering if the RO would be better to meet with than his uro since presumably the RO would see more of this and have a better idea of potential ways to treat the SEs. (If indeed there are.) I think that could be worth a shot since I'm sure this is all rather unpleasant for him.
Posted 11/12/2018 5:55 PM (GMT 0)
I hope it does pass with time. I am curious as to whether he had any surgeries (not for prostate) near that area in the past.
Posted 11/12/2018 6:39 PM (GMT 0)
I am 2.5 years out from HDRBT & EBRT and I still have issues with diarrhea, constipation and occasional bleeding. My MO sent me to a Gastroenterologist to see what was happening inside, which is what your URO/RO needs to do. I was dx with chronic radiation enteritis and radiation proctitis. The GI doc can help manage side effects from then on as that is their specialty. You want to keep an eye on issues so they don’t develop into something worse. Good luck to you and your husband. Take care. -JR
Posted 11/12/2018 7:09 PM (GMT 0)

CaliJR said...
...I was dx with chronic radiation enteritis and radiation proctitis. The GI doc can help manage side effects from then on as that is their specialty.....

Can you tell us how your radiation enteritis and proctitis are being managed, JR?

I've got a GI appointment this Wednesday. Thanks.
Posted 11/12/2018 7:34 PM (GMT 0)
Enteritis is a cyclical program of miralax twice daily with senokot to keep things flowing on constipation days, sometimes if no stool for 3 days, then fleet enema. Typically that gets things flowing so much I have cycle of diarrhea so I pull back on those items. If I have a good month, I can have several days in the middle without either issue. Proctitis is just more mild, with some inflammation and occasional bleeding. I just have to alert for excessive bleeding to recheck. I have had 4 colonoscopy in last couple of years for maintenance checks. I also have dysuria which is managed by Flomax twice daily with occasional pyridum when it flares up.

So that is how I deal with my treatment side effects. One MO says “maybe you will have rest of your life” and another one says “maybe it will resolve itself”. At this point it is my new normal, but cancer control is good.
Posted 11/12/2018 8:34 PM (GMT 0)
He has had no surgeries. Cancer too far advanced. There are no issues as of yet with colon, intestines, etc. It's all urinary tract. Bladder, uretha. His next appointment is last week of this month with uro dr. We had asked the dr. about when next ct scan would be...no real answer. My job is write questions before going, keeping a log of test results and writing down what dr. said during appt.
Posted 11/12/2018 9:30 PM (GMT 0)
I had the same thing except no incontinence tho I did have urgency and it felt like I was pissing razor blades. around the same time frame too. my doctor didn't even examine me. he said it would clear up, and eventually it did.

the symptoms returned a year or so later but they were much milder and it cleared up sooner. no problems now.
Posted 11/13/2018 4:59 AM (GMT 0)
I had very serious problems with bleeding, and strictures that required a cath and two flushes in the same day. It all started two years after my ART.

My uro sent me to hyperbaric oxygen, which worked like a champ. It did take 60 sessions, but I've not bled since.
Posted 11/13/2018 5:07 PM (GMT 0)
Thanks for all your input. Sometimes it helps to find out info from those that go thru it than the medical profession!!!
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