UC + Radiation Enteritis from prostate cancer treatments

Hi all...I've been on the Prostate Cancer forum for several years. This is my first post on this forum after reading it for the past week, and talking to iPoop. I will need a more creative handle ;)

I've had UC since about 1973, as a package with Behcet's Syndrome. It's been in remission, with very minor flairs, since 1998, in large measure thanks to Asacol/Mesalamine/Apriso/, four to eight tablets a day. Very lucky, it seems.

After a diagnosis of Prostate Cancer, I stayed away from radiation based on the uniform warnings of several expert radiation oncologists, all of whom cautioned about the risks of reigniting my UC. Instead, I underwent surgery to remove my prostate.

Surgery failed, and highly accurate radiation was my only reasonable, secondary, choice. Forty sessions along with ADT hormones, with no complications. Two months after radiation ended, I started having severe rectal issues, urgency all the time, mostly gas and mucus, NEVER any blood, sed rate was about 30, sporadic constipation, uneven bowel movements, and a little diarrhea.

My radiation oncologist and gastroenterologist both suspected chronic radiation enteritis/proctitis/colitis. That was back in August, 2018. I've been on 8 tablets of Aprisio, 2 probiotics a day, and started compounded Sucralfate 500mg suppositories about 3 months ago. Over the three months, my symptoms have eased slightly.

Nine months after radiation ended, I was finally cleared to have a colonoscopy. That happened on Valentine's Day, February 14th. The findings were:

*Mild (Mayo Score1) proctosigmoid UC, worsened since my last colonoscopy two years ago (findings had been stable for the last 20 years).

*Diverticulitis and granular mucosa through the entire colon.

*Blood tests were normal, sed rate has come way down, and a high RBC of >30.

As a result my GI and RO docs seem to agree that my UC has fired up and I have radiation colitis on top of that. Very surprising to me is that my symptoms eased up noticeably in the last ten days, since my colonoscopy flush.

My GI, seems to be very aggressive. She is not easily accessible, but I have an appointment with her on February 27th. I started the steroid, Budesonide S.E. 9mg tabs, 4 days ago.

My GI also wants me to start the biologic infusion, ENTYVIO, early next month. That seems most aggressive, and I plan to give Budesonide time to see if it helps cools things down, first. In any event, I'm not going on Entyvio yet!

So my UC & radiation enteritis regime looks like:

1. Apriso 375mg tabs, eight per day

2. Two probiotics a day

3. One Budesonide 9mg daily, for 6 to 8 weeks

4. One Sucralfate 500mg suppository every evening OR a 4gm Rowasa enema every day, given GI approval

In two months we'll re-evaluate. I'm hoping my GI doc agrees, and doesn't push back too hard.

UC is as confounding as prostate cancer. No known cause, no known cure, only hope, & treat the symptoms. From my readings of this forum, it's obvious your challenges are just as infinitely varied as those with prostate cancer. I applaud your courage and fortitude fighting the beast. Thanks for listening.

Maybe the doctor feels it will be difficult for you to achieve remission given the state of your colon. I might go for the entyvio, were I in your shoes. If you are set against it, over the years, I have stumbled on a few interesting studies regarding adding curcumin supplements to mesalamine regimen to improve the odds of remission. Some have shown 70% remission rate. Worth a try, with your doctor's approval, of course, since it is low risk. Everything I've read says 3g is the daily dose required in conjunction with max mesalamine dosage.

Thanks, my new friends. To answer your questions:

1. Current symptoms include about 6-8 trips a day, with bowel moments 'eventually', once or twice. The rest of them are air with some mucus. One day out of three, no bowel movement, just air and mucous, or completely a false start. Urgency at least once or twice a day.

2. Some low grade pain with bowel movements, NO blood. Boring diet, as always.

3. I've been on steroid enemas in the distant past, especially Rowasa.

4. about three months ago I tried Canasa suppositories for about 10 days, and my symptoms got much worse. I was living in the bathroom. When I switched to Sucralfate, things improved immediately.

5. I've been on eight Apriso 375mg tabs per day for about two years.

6. Hope to have my GI doc write a Rowasa Rx tomorrow.

7. Curcumin sounds interesting. I'll look into it.

....and so it goes. I'll keep you posted.

GI visit went very well. My case was reviewed by a panel of GI docs and pathologists several days ago. They agree with my radiation oncologist, that the rads awakened my otherwise dormant UC, and that radiation proctitis was, as best, a minor issue.

So the plan for the next two months is as outlined above. iPoop, you were spot on! Awaiting Rowasa enemas. I'll also take a small dose of Miralax laxative daily to ward off occasional constipation. Yes, it seems an oddity with UC.

The Crohn's and Colitis Center at the University of Miami is very supportive of ENTYVIO treatments. I'll keep you posted.

iPoop said...
.....Lay on your left side for 20 minutes or more to give the medication time to spread and absorb. I administer mine just before bed, lay in bed on my left side while either reading a book or watching tv. You should see results in 2-3 weeks, and sometimes less.

Remember, UC healing is not a linear progress from flare to healed, with steady improvement on a day-to-day basis. Your healing progress will be more like a rollercoaster ride, full of sharp ups and downs (normal to have a series of good days immediately followed by a bad day). You should see week-to-week improvements, but might see a lot of day-to-day variations in your bms.

Good luck, keep us posted on your progress, and don't be afraid to ask us any questions you might have!

Very good advise, iPoop. Thanks!

I've been on Rowasa enemas for two days, and mostly just made as mess. Now I have a towel under me, will squeeze the air out as you suggest, and add a bit more lubricant, tonight. I'm well aware of the nonlinear progression of this disease. I also switched from Apriso, 375mg x8, to Lialda, 1.2gm x4.

I did some research on curcumin.

https://www.consumerreports.org/diet...-inflammation/

Like all supplements, it's not regulated the same way medications are. "Several studies and periodic Food and Drug Administration nationwide recalls have shown turmeric powder can be contaminated with heavy metals such as lead,” says Tunde Akinleye, a chemist in Consumer Reports’ food safety division."

"They found that the group that took curcumin actually had a slightly higher risk of acute kidney injury (17 percent risk for that group vs. 10 percent risk for those in the placebo group), though the authors note this should be investigated further in future studies; it may have been a statistical anomaly."

"In general, however, curcumin taken orally, whether as a spice or as a supplement, is not well-absorbed and is quickly eliminated from the body—one of the reasons that some experts have been skeptical about claims of its effects in humans. One 2017 study compared curcumin to “a missile that continually blows up on the launch pad, never reaching ... its intended target.”

I'll pass on curcumin for now.