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Pelvic radiation disease

User
Posted 08 Oct 2018 at 20:23

An update


I finished salvage radiotherapy in June.  Urinary incontinence was a real hassle.  I was prescribed mirabegron and solifenicin.  I have finished with these now.


During the treatment, I had the odd soiling incident.  After the treatment, I had to be careful not to wander too far from a toilet either for urinary or bowel operations.


In September, bowel movements became really problematic.  I have soiled myself on several occasions.  Sometimes, when driving the car because I can't get to a toilet quickly enough.  Sometimes it can be as simple as soiling myself at home because I get no warning of an impending need to go.  My trousers can be halfway down my legs and the poo is coming out.  I've even had to go in the bushes on several occasions when walking the dog.  It's all getting very distressing.  I'm having to get up some nights to pee and now to poo.  I have soiled myself in bed overnight.  There has been mucus coming our of my back passage as well, rather like a very clear hair gel.  My stomach gurgles a lot and I have a lot of wind.  I'm terrified of farting because I never know if I'm going to release wind or soil myself.  My rectum can be itchy and hot.  Very, very occasionally, I have had shooting or stabbing pains in my back passage, but not too often, but enough to be noticeable.


I contacted the nurses from PCUL who put me in touch with the pelvic radiation disease association.  Didn't know that such a disease or such an association existed.


I looked PRD up on the internet and I have several of the symptoms.  However, I'm not into self-diagnosis.  


My cancer nurse contacted my oncologist who has prescribed rectal prednisolone.  The list of side effects from that has actually put me off.  I'm worn down with the side effects of the treatments I've had.


My poo samples came back clear for signs of infection.  I'm still awaiting the results of the blood tests they are doing.  


Does anyone have experience of this?  This is not typical diarrhoea - I have no stomach cramps whatsoever.  I'm still on bicalutimide, which can cause some of the above, but I really do think this is a delayed reaction to the radiotherapy. 


It's degrading.  Erectile dysfunction.  Urinary incontinence.  Soiling oneself.  What a mess (literally, sometimes).


Ulsterman

User
Posted 08 Oct 2018 at 23:41
OMG not fun Ulsterman.. Having s*** myself in s traffic jam once I can sympathize! The bushes thing is no fun either especially if it goes on a bit - really works those leg muscles!!

Hope someone comes up with some answers soon
User
Posted 09 Oct 2018 at 17:44

Dave


Thanks, as ever, for being a voice of reason.  I've just made a bigger issue out of this than I ought to have done, but I'm just a bit weary.


Lyn


I'm being a woose 


Ulsterman

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User
Posted 08 Oct 2018 at 23:41
OMG not fun Ulsterman.. Having s*** myself in s traffic jam once I can sympathize! The bushes thing is no fun either especially if it goes on a bit - really works those leg muscles!!

Hope someone comes up with some answers soon
User
Posted 09 Oct 2018 at 00:30

Classic radiation proctitis - this is a useful guide from Macmillan
https://www.macmillan.org.uk/_images/practical-management-gi-symptoms-pelvic-radiation-disease_tcm9-300557.pdf 


Others on here have had success with prednisolone rectal foam and there are generally no side effects; have you read the side effects of the tablets by accident?


https://community.prostatecanceruk.org/posts/t13260-Return-of-Proctitis 

Edited by member 09 Oct 2018 at 00:38  | Reason: to activate the hyperlink

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2018 at 00:57
Looks like you have been unlucky with severity and extent of effects. I just got various degrees of mucus for about 6 months post RT by which time had petered out. Mucus is quite common. I never took anything for it.

Hope your medication for your situation helps greatly.
Barry
User
Posted 09 Oct 2018 at 14:11

Lyn


I won't list all of the side effects listed on the patient information leaflet, but the leaflet is specifically for the suppositories:


depression


suicidal thoughts


mania


anxiety


insomnia


hallucinations


serious skin reactions


nausea, diarrhoea, indigestion


headaches and blurred vision


wasting of muscles (I'm already on hormone therapy)


bone thinning


breaking of tendons


severe stomach pain


weight gain - already struggling with this as a result of bicalutimide


In the past, when I have needed prescription medication, I have never really worried about or experienced side effects.  But, rightly or wrongly, reading the list of side effects spooked me.  I suppose over the past two years I have suffered many side effects from the treatments I have been on and I now am very wary.


I'm probably being irrational, but that's the point I have reached.  Also, it's half-term next week and I'm off to South Korea, so I'd rather manage unpredictable bowel movements than some of the above side effects.  I'll start the suppositories when I get back.


Ulsterman

User
Posted 09 Oct 2018 at 16:16
This sounds awful, Ulsterman, and has me rather worried about my forthcoming RT. I do hope you're able to find an effective treatment for it soon, and please do keep us updated.

Chris
User
Posted 09 Oct 2018 at 16:37
Really sorry to hear of this. All sounds so depressing and degrading and very very stressful indeed. After surgery and the aftermath , that’s why I decided no more pelvic treatment at all QOL all the way. May live to regret it , who knows. Better to look forward positively than back negatively in my case. Try to enjoy your trip

If life gives you lemons , then make lemonade
User
Posted 09 Oct 2018 at 17:25
I had a bit of radiation proctitis Ulserman, all cured by taking Predsol.

Hope you get better soon.

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 09 Oct 2018 at 17:31
There is something wrong here. Either they have listed the side effects of prednisolone tablets in error or the suppositories are more problematic than the foam. Could you ask for the foam to be prescribed instead - it has no known side effects.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Oct 2018 at 17:36
Lyn / Ulsterman,

I can confirm that I suffered no side effects whatsoever when I was taking the Predsol suppositories.

Regards

Dave
"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"
User
Posted 09 Oct 2018 at 17:44

Dave


Thanks, as ever, for being a voice of reason.  I've just made a bigger issue out of this than I ought to have done, but I'm just a bit weary.


Lyn


I'm being a woose 


Ulsterman

User
Posted 09 Oct 2018 at 19:40

Chris and Chris J


please don’t let my experience put you off - despite it all, I still am glad I had the RT


ulsterman

User
Posted 09 Oct 2018 at 19:44

Ulsterman


I finished SRT in May 2017 by September 2017 I was passing lots of clots and blood in my urine. My bowels were a bit iffy , diarrhoea , constipation,wind and extreme pain just before passing motions, I did have the odd accident but not to the extent you are having. It did settle down and now I am almost back to my normal.


I have got a small amount of radiation damage to the bladder but nothing as bad as I imagined. I was pointed in the direction of PRDA, the members of that group really suffer following RT to the pelvic organs but alot of them had RT a long time ago when RT was more a scatter gun approach.


What I have gleened from my own experience and from the members on PRDA very few in the medical profession understand radiation damage. 


Thanks Chris

Edited by member 09 Oct 2018 at 19:44  | Reason: Corrected date

User
Posted 09 Oct 2018 at 20:57

Originally Posted by: Online Community Member


Lyn


I'm being a woose 


Ulsterman



Far from it; you have shown great fortitude this far and will find your feet again soon. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Oct 2018 at 18:43
After my RT, bowel & bladder settled down.
Then a few months later I started getting sudden urgent visits to the bathroom (poo)
I thought i had IBS, then i cut out the morning All Bran and wrigleys extra and everything returned to normal

Weird
 
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