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Radiation cystitis years after prostate cancer — recurrent blood clots

Posted by nealmccoy175 @nealmccoy175, Sep 28 2:15pm

My dad is 73 and had radiation for prostate cancer about 8 years ago. He is now dealing with recurrent urinary retention, and blood clots have repeatedly blocked his Foley catheter. He’s had 4 ER visits in the last 17 days. He previously completed hyperbaric oxygen treatment.

Has anyone dealt with similar late radiation complications, especially recurrent bleeding/clots and catheter blockage? What ultimately helped, and what type of urologist or specialist treated you? We’re currently trying to get him evaluated by a reconstructive urologist and would really appreciate hearing others’ experiences.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

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29modela | @29modela | Oct 5 7:25am

I feel your pain, disgust and anger. The same exact thing happened to me, 9 years after radiation in April this year. I had 8 emergency department visits with blocked system, and unbearable pain. They cathed me and sent me home each time saying see your urologist. My actual urologist was out of town for an extended period of time. Staff didn't know what to do. The finally called in a urologist from a neighboring town 50 miles away, who figured out what was wrong and did a cystoscopy and cauterization of the lesions. He diagnosed me with radiation cystitis. He sent me to Hyperbaric Oxygen Chamber treatment and now urine is flowing like a river with no pain or obstructions. Once totally healed I will be evaluated for an artificial sphincter valve. At present I'm using 12-16 pads per day.
At the same time this was happening to my urinary system, I developed radiation enteritis. Nothing digested right, exploding stools. I had to go on a special, highy restricted brat diet. Went from 172 to 142 in 2 months. At 80, I'm out buying new clothes when I wasn’t in the bathroom. My HBOT treatments ennded on July 9 and I feel almost back to normal now. When the radiation enteritis struck, my gastroentrologist, was home in India for a month and his staff didn't know what to do either. My wonderful wife used AI to figure out what to feed me and I got through it and feel great now.
Hope this helped. Its nice to know that you're not the only person out there with similar issues. Good luck with your treatments. Wish you long and pain free life.
John

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ransan | @ransan | Oct 5 7:44am

My cystitis hit me 18 months after my radiation treatment, which was 6 months after my prostate removal.
I passed clots and blood for the next 6 years. Many trips to the ER.
I had a Supra Public catheter for 10 months, the first month went to the ER 3 times for clogs.
Having to change it monthly was a challenge at times, but eventually it did help. I also did the HBOT thing for 40 treatments, it pretty much stopped the bleeding but that’s about all except messing up my vision.
I spent the next 3 years psyching myself up to go ahead with the urostomy surgery only to find out I developed a fistula between my bladder and lower intestines. Now it appears I am looking at wearing 2 bags instead of just the one.
However you decide to go, don’t put it off. Good luck with it all and if anyone has insight on the dual bag lifestyle I would like to hear from you

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Colleen Young, Connect Director | @colleenyoung | Oct 10 10:03am
In reply to @ransan "My cystitis hit me 18 months after my radiation treatment, which was 6 months after my..." + (show)
Profile picture for ransan @ransan

My cystitis hit me 18 months after my radiation treatment, which was 6 months after my prostate removal.
I passed clots and blood for the next 6 years. Many trips to the ER.
I had a Supra Public catheter for 10 months, the first month went to the ER 3 times for clogs.
Having to change it monthly was a challenge at times, but eventually it did help. I also did the HBOT thing for 40 treatments, it pretty much stopped the bleeding but that’s about all except messing up my vision.
I spent the next 3 years psyching myself up to go ahead with the urostomy surgery only to find out I developed a fistula between my bladder and lower intestines. Now it appears I am looking at wearing 2 bags instead of just the one.
However you decide to go, don’t put it off. Good luck with it all and if anyone has insight on the dual bag lifestyle I would like to hear from you

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@ransan, welcome. I invite you to join the discussions in the Ostomy Support Group https://connect.mayoclinic.org/group/ostomy/

You might start here:
- What has worked for managing your urinary diversion? Share your tips! https://connect.mayoclinic.org/discussion/what-has-worked-for-managing-your-urinary-diversion-share-your-tips/

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ransan | @ransan | Oct 10 11:14am

I am not necessarily new, I just couldn’t get my old login to work.
I had some very helpful comments on that sign on.
They won’t send the password reset for some reason.
Old login was @sansman

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