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MILD radiation induced proctitis...

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Posted 1/15/2016 3:53 PM (GMT 0)
I finally got my diagnosis, for my toileting issues that re-appeared about 6 months post treatment and have been getting worse.


I guess my only real issue is my misconception of the word "mild".


And, all I can say about it now, is how bad I feel for someone who has a moderate or severe issue with radiation induced proctitis...

My mild case has been pretty miserable at times-
Posted 1/15/2016 4:10 PM (GMT 0)
Can you elaborate on your symptoms?

Mel
Posted 1/15/2016 5:05 PM (GMT 0)
Rectal PAIN, urgency, minor leakage, minor bleeding, frequency with bowel movements, abdominal cramping, bloating, abdominal pain...

I feel like there's an obstruction, or some kind of narrowing in my bowels-

I've also got mild radiation cystitis, and possible over treatment to my pelvic floor muscle? (regarding the minor bowel leakage, and pain when trying to urinate)
Posted 1/15/2016 5:27 PM (GMT 0)
Been there. I had more severe symptoms and the pain during a bowel movement was enough to make me pass out.

I ended up having to have a colonoscopy and laser treatments. That helped, but now I have to take Miralax twice a day to prevent the constipation and stop any straining. It's annoying, but it's worked to prevent bleeding and the other painful issues.

Andrew
Posted 1/15/2016 5:48 PM (GMT 0)
vaportrail,
Sorry to hear about the return of symptoms. Everyone has different sensitivity to radiation. They call that "late term" (not chronic) when it crops up again later after treatment. The reason they call it that is because they typically (not always) go away on their own.

That feeling you have like there's an obstruction is called "tenesmus." It's not really an obstruction - just the way the brain interprets the nerve signals from inflammation. The important thing is not to strain - that will only cause blood vessels to rupture. You can take Colace to soften stool so it's easier to pass.

You should talk to your RO or a proctologist about your symptoms. Anusol with cortisone is very soothing. There's a medicine called mesalamine that's available as pills, suppositories, or enemas (there are several brand names, like Canasa, Asacol, etc.) It is specific for inflammation in the bowels. If medicines don't work there are other ways, such as Andrew described.

Hopefully, it will go away on its own. Meanwhile, it's ****ing annoying.
Posted 1/15/2016 6:08 PM (GMT 0)
I have similar issues, but not nearly as severe. But it did start 2-3 years after I completed my SRT.

The worst is constipation that can get very severe if I don't jump on it right away (Miralax if no movement for 2 days). Stools at time are cobblestone in appearance and narrow, coupled with that obstructed feeling. At other times, no issues whatsoever. Quite often, I'll get pretty bad cramps, but the subsequent BM is pretty normal (no diarhhea). I did have one bleed a few weeks ago, after a particularly hard BM (LOTS of straining -- maybe the most I've ever done). The bleed was scary as hell. But I do have hemmorhoids. My friend, a retired ER doctor, told me it's 99% due to the straining.

It's no fun.

I am scheduled for a routine colonoscopy in late March. It will be my first, post SRT. It will be "interesting" to see if there is radiation damage. Incidentally, that time was moved up because I had radiation. My regular schedule called for one in 2018. But the GI said every 5 years now, due to an increased probability of radiation-related issues.


I think the SE of surgery are immediate and really quite predictable (ED and incontinence) for MOST folks. Of course, there can be other surgical SE. The radiation SE are later and MUCH more subtle (or maybe not!).

Folks on HW are very quick to mention the SE of surgery, AND RIGHTLY SO. But I also think the SE of radiation are often undersold here. I wish those strong advocates of radiation would at least mention these issues as much as they harp on the surgery SE.
It's a tough situation regardless of the tx. modality!

Of course, there are always extreme SE, those who fall on the tail end of the bell-shaped curve (the bad end). You can ask Purgatory about radiation (but in his case, much of it was due to bungling by the medicos, I think), and there are folks here who are suffering terribly by extreme incontinence man years after surgery.

Mel
Posted 1/15/2016 6:29 PM (GMT 0)
Mel,

I actually did put together a list of SE's and their approximate frequency of occurrence, if you are interested. I've posted it before. I think that all the symptoms the OP described are listed there.

But it only applies to primary IMRT. It does not apply to SRT, whose symptoms are typically worse because there's no prostate in place to block the radiation, so the rectum, urethra and bladder usually get a bigger hit even at the lower dose. It also does not apply to other modalities like SBRT, LDR brachy, etc. - each one carries its own risk profile. That list also does not cover what's seen in community practice, which may be worse. And there's no accounting for such issues as a bad plan, poor imaging, too-high dose constraints, individual variance in radiation sensitivity and anatomy, and poor performance at baseline (e.g., pre-existing bowel problems (e.g.,IBD or hemorrhoids), pre-existing urinary problems, and pre-existing erectile dysfunction).

Adverse events of primary, intensity-modulated radiation therapy (IMRT)
Posted 1/15/2016 7:20 PM (GMT 0)

InTheShop said...
Been there. I had more severe symptoms and the pain during a bowel movement was enough to make me pass out.

I ended up having to have a colonoscopy and laser treatments. That helped, but now I have to take Miralax twice a day to prevent the constipation and stop any straining. It's annoying, but it's worked to prevent bleeding and the other painful issues.

Andrew

Thanks for the reply-

I've got a RX for miralax now also. The doctor said if that doesn't help, or if it gets worse, they can give me an enema RX that is supposed to help.

I've had a few really bad bowel movements, where I had to lay down and grit my teeth for a few minutes for the pain to pass. I quickly realized my diet is of utmost importance, in relation to me having a comfortable toileting session. (In a moment of weakness, I jumped off my vegetarian diet, and scarfed down a big mac and fries... I suffered for days afterwards-)
Posted 1/15/2016 7:23 PM (GMT 0)

Tall Allen said...
vaportrail,
Sorry to hear about the return of symptoms. Everyone has different sensitivity to radiation. They call that "late term" (not chronic) when it crops up again later after treatment. The reason they call it that is because they typically (not always) go away on their own.

That feeling you have like there's an obstruction is called "tenesmus." It's not really an obstruction - just the way the brain interprets the nerve signals from inflammation. The important thing is not to strain - that will only cause blood vessels to rupture. You can take Colace to soften stool so it's easier to pass.

You should talk to your RO or a proctologist about your symptoms. Anusol with cortisone is very soothing. There's a medicine called mesalamine that's available as pills, suppositories, or enemas (there are several brand names, like Canasa, Asacol, etc.) It is specific for inflammation in the bowels. If medicines don't work there are other ways, such as Andrew described.

Hopefully, it will go away on its own. Meanwhile, it's ****ing annoying.


Thanks for the reply, I learn a lot from your posts.
Posted 1/15/2016 8:31 PM (GMT 0)
Vaportrail - Diet is very important. Just remember that what goes in, comes out. Foods with lots of sugar and/or salt should be avoided as they dry things out and make things worse. I have a fruit and a high fibre cereal for breakfast, for lunch it's normally a salad with yogurt and balanced dinner. Sometimes I splurge and have cookies with my 4:00 o'clock tea.

Two things that I found that work for pain relief are sitz baths and the prescription strength suppositories. The suppositories help reduce inflammation but shouldn't be used for more than a couple of weeks.

I found that starting daily miralax really helped with keeping things moving. Without the straining, the inflammation calmed down and the pain went away.

Andrew
Posted 1/15/2016 8:37 PM (GMT 0)
I had major bowel and anal issues with my SRT while it was going on. Pain that brought tears to my eyes, blood, and a behind that burned so bad after a bowel movement that I could barely wipe myself and had to jump into a warm sitz bath right after just to stop the pain. Eight months later I still have issues but they have improved.

A week ago I went to a colo-rectal surgeon who did my last 3 colonoscopys. He did a scope and told me there was no evidence of radiation damage - which really surprised me and was what I was really worried about. He told there was a lot of inflamation and he told me to go buy this product at my drug store called Anurex. Cost was $ 30. Its a plastic item that's filled with a liquid. You store it in the freezer and when you need relief, take it out, lube it, insert gently and sit on a towel for 5 minutes. It works wonders !

Diet was modified too. No coffee, no alcohol, no soda, no chocolate and no spicy foods ...

I also got a Vitamix blender and have really increased my fruit intake. Tastes great and helps keep stools soft

Hope this helps you
Posted 1/15/2016 9:00 PM (GMT 0)
It can take awhile before you can see the damage with a colonoscopy. I had a colonoscopy 6 months after IMRT and they saw nothing. Three years later, they saw plenty.

RT damage can take years to show up.

Andrew
Posted 1/16/2016 12:24 AM (GMT 0)
Allen:

I didn't realize that SRT SE are worse than primary IMRT.

When I see Dr. King, one of my main queries will be to ask about SBRT SE in my situation (hot abdominal lymph node(s))

Mel
Posted 1/16/2016 1:06 AM (GMT 0)
Sheesh, this is what I call the "ick factor" in all this. Personally , I think SEs are understated for ALL of the PCa treatments..surgery and radiation. Transient or not...these things sound very uncomfortable, painful and icky...I am not down with these kind of problems..but then who is? Bottom line is there are no good treatment options .I'm not saying you shouldn't do them, but. I repeat ICK
Posted 1/16/2016 1:37 AM (GMT 0)
Mel,
I see you commented on it in a previous thread on the subject a year ago - not that I seriously expect anyone to remember threads from a year ago. My brain seems to be particularly cluttered - which is why I have to practice mindfulness.

Why salvage radiation is bad.

Your situation - treating LNs only - is also quite different from SRT in its SE profile. Where the radiation goes makes a big difference in SEs. Dr. King uses 25 Gy of SBRT for that purpose and has so far seen very few SEs. Being fatter can help a lot.

- Allen
Posted 1/16/2016 1:54 AM (GMT 0)
I had a colonoscopy about a year after my brachy and IMRT and the doc said he couldn't see tell. To Andrew's point, it might have been too soon. I'm up again in two years so we'll see.

For those that have posted here with radiation SEs, I do hope they prove to be temporary and treatable!
Posted 1/16/2016 3:40 AM (GMT 0)
I've had a lot of SRT as indicated in my signature. One year after the first IMRT to prostate bed I had a colonoscopy to find source of bleeding. Turned out to be radiation but I also had diverticulitis . Not sure if the two were related. After IMRT to pelvic nodes a year later bleeding resurfaced and I had endoscopic radio frequency ablation to stop extensive bleeding from radiation. It worked for awhile but bleeding has resurfaced. I don't believe that the second dose to nodes is the cause since rectum was not involved. Bottom line is that SRT is not a walk in the park and problems can arise years later. I also have recurrence of incontinence and complete ED.
Bob
Posted 1/16/2016 4:02 AM (GMT 0)
So, generally speaking, SR is much more onerous than just IMRT as initial treatment?

There is isn't a heck of a lot else you can do other than SR after BCR post RP is there ?

So if it even looks like you might need SR before RP you might as well choose RT as a primary treatment thus avoiding the pitfalls of SR ?
Posted 1/16/2016 4:13 AM (GMT 0)
Allen:

Thanks. One of the major impacts on me from HT is that my memory has really been messed up, especially short term. Heck, at its worst, I would start a sentence and would forget what I was going to say before I finished the sentence. Oddly, it never happened at work! It also greatly hurt my ability to multitask. During HT vacation, after about 2-3 months, things improve greatly.

So, please be patient if I ask you the same thing a few times!

I reread the thread. It's a good one. I was going to bump it, but I see it got locked!

Mel

Post Edited (compiler) : 1/15/2016 9:33:07 PM (GMT-7)

Posted 1/16/2016 4:21 AM (GMT 0)
Sheepguy...I've seen many here that chose surgery specifically because it gave them the option to do radiation as a back-up. As I staged my disease, the best we could come up with was that there was a 50-50 chance that I would need salvage radiation so I chose to cut to the chase and have RT as my primary treatment rather than roll the dice.

That said, it's a personal choice and I can see why some choose not to think as I did. And while SRT does have more SEs than radiation as a primary treatment, it does seem like there are many here that have had zero problems with SRT.

If there is a 90% plus that you'll need salvage radiation, I personally would question having surgery first with those odds. But even then I think some find comfort with cutting out the cancer and using RT to mop up anything that remains. But I do think those guys should think carefully when choosing that path.

As always, it's clear as mud...
Posted 1/16/2016 3:25 PM (GMT 0)
Since I'm suffering so fast after my primary radiation with brachy boost treatments, and did get the radiation proctitis diagnosis I was wondering if the radiation oncologist may have messed up or something.

But when I think back, he told me there was a good chance I would have some MILD bowel and bladder issues after the treatments.

Again, I guess I just didn't realize how living with even mild issues can be a real chore-

And a bit nervous that my condition might get worse before it gets better?
Posted 1/16/2016 3:52 PM (GMT 0)
anything is possible, but unlikely. I started have bowel issues during treatment. It resolved for a bit any then came back. Got worse. Got better.

Mostly I just learned how to manage it and when to see the doc for help.

I get being nervous. Best defense is finding a way to manage it that works best for you.

Hang in here,
Andrew
Posted 1/17/2016 3:06 AM (GMT 0)
I doubt he messed up, but combo therapy like you got is a huge dose. The SE you're experiencing is not unusual. You're probably a bit more radiation-sensitive than most.

- Allen
Posted 1/17/2016 4:04 PM (GMT 0)
Hi Vaportrail (cool name by the way)...Sorry to hear about some of your side effects. As a recent surgery patient I have my share of common SEs to deal with. This prostate cancer stuff is no walk in the park. I hope you recover soon.

Just a side note, I've heard some in the past ask why anyone would choose surgery over radiation (which I find a little rude esp. when it is in the context of someone who already chose surgery). One of the reasons I chose surgery was because I was afraid of any side effect that might mess with my rectum, since spending time on the toilet is one of lifes pleasures for me. I realize these may not be common long term SEs but that was one of my fears. I want to be clear, I am not trying to start a firestorm of conversation of radiation vs surgery as there are plenty of posts covering that topic. Also, I have nothing but respect for Vaportrails choice and many others who chose radiation as their primary. Sometimes I am even a little jealous of their fantastic results (I hope I end up with similar results with my choice). I also realize surgery is and hasn't been a walk in the park, my comments are just meant for those who really don't understand the personal choices everyone makes. Obviously more went into my decision, but this fear was one part of many.
Best wishes for everyones recovery and may you be blessed with low SEs and full recovery...Jim
Posted 1/17/2016 5:07 PM (GMT 0)
Boy howdy. After hanging around here for the better part of 3 years I've come to the conclusion that I'm going to ride the AS horse as long as possible. There is no treatment that is not going to screw up MY PARTICULAR life forever. Surgery- will never get back physically at 67.Radiation- maybe a little better but like some guys have said.."Radiation just keeps on giving".
I'll keep watching you guys , though, looking for a bright spot. LOL
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