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Radiation Proctitis?

User
Posted 04 Jun 2016 at 09:28
Hi all,

I had 32 daily sessions of radiotherapy to my prostate bed in June and July 2014 and a further 15 daily sessions to my pelvic lymph nodes in June 2015.

During the 2014 RT the pain when going to the toilet started after about my 6th session and continued until about 3 months after the RT ended. My description then was that it was like passing razor blades - I would physically shudder from the intense pain. I also had mucus on and off at the same time, which continued for about 10 months after. I don't remember if there was blood.

The pain I'm experiencing now is much worse than back then. For the last 4 days (since Tuesday) I've had excruciating pain in the lead up to "number 2s" that makes me scream and, just when you think it can't get any worse, it does during the "number 2s" itself, which makes me scream even louder. On a scale of 1 to 10 it's an 11. I feel like I'm being ripped apart.

I saw a GP on Thursday who had a really thorough rummage around inside and said she could feel a lump but didn't know what it was. She did blood tests that have all come back fine. I spoke to my own regular GP on Friday who knows my history and he said it could be radiation proctitis but I'll need a camera to confirm.

If it's radiation proctitis does it come on that quickly? On Tuesday morning, nothing, by Tuesday night a definite change and by Wednesday morning the pain.

The pain doesn't last. About half an hour after finishing the necessary all that remains is a dull ache that I could live with. Problem is, since the radiotherapy I go 3 or 4 times a day.

If anybody else has had these symptoms, what were you diagnosed with?

Thanks

Jim

User
Posted 05 Jun 2016 at 13:41
Hi I too have radiation proctutus, started 6 months after only 6 sessions of RT to prostate. Initially blood every day but no pain. Saw consultant who had a look and confirmed it was that. Put me on suppositories , they reduced it significantly but then 3 weeks ago there was a cup full of blood that had soaked my underwear, trousers and chair. Saw consultant again and now got a colonoscopy next Saturday as I am concerned that they see a bit of low level damage and dismiss it as that but have not looked higher up. Sorry that you are in pain but wanted to share my concern re how far up they look. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 04 Jun 2016 at 13:57
Hi ,

I have experienced radiation proctitis and it is not pleasant. I don't think my symptoms are anywhere as near as bad as yours though. When I saw my Onco in January this year I mentioned my situation ( a very colourful pure blood discharge and blood in mucus ) . I had some blood tests a month apart which came back as no concern showing. I discussed this with my GP. As I have no real pain in 'passing ' she advised me to stay on the normacol ( and occasional loperamide) meds which I started taking during RT winter 14/15 and have continued with ever since.

This normacol and loperamide combo has been brilliant for me. Have you spoken to your GP about trying something like this or similar ?

However the situation has not improved with discharge ( blood showing 3-4 times a week) and an increase in pain when passing on the ' bloody days ' . I will discuss this fully with my Onco at next months 6 monthly review meeting. My GP was happy for this wait. It's not an uncommon side effect from RT apparently.

There's always something to worry about with the blasted disease isn't there . Will we ever be free from it ?

Wishing you a better time ahead ,

John

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User
Posted 04 Jun 2016 at 13:57
Hi ,

I have experienced radiation proctitis and it is not pleasant. I don't think my symptoms are anywhere as near as bad as yours though. When I saw my Onco in January this year I mentioned my situation ( a very colourful pure blood discharge and blood in mucus ) . I had some blood tests a month apart which came back as no concern showing. I discussed this with my GP. As I have no real pain in 'passing ' she advised me to stay on the normacol ( and occasional loperamide) meds which I started taking during RT winter 14/15 and have continued with ever since.

This normacol and loperamide combo has been brilliant for me. Have you spoken to your GP about trying something like this or similar ?

However the situation has not improved with discharge ( blood showing 3-4 times a week) and an increase in pain when passing on the ' bloody days ' . I will discuss this fully with my Onco at next months 6 monthly review meeting. My GP was happy for this wait. It's not an uncommon side effect from RT apparently.

There's always something to worry about with the blasted disease isn't there . Will we ever be free from it ?

Wishing you a better time ahead ,

John

User
Posted 05 Jun 2016 at 13:41
Hi I too have radiation proctutus, started 6 months after only 6 sessions of RT to prostate. Initially blood every day but no pain. Saw consultant who had a look and confirmed it was that. Put me on suppositories , they reduced it significantly but then 3 weeks ago there was a cup full of blood that had soaked my underwear, trousers and chair. Saw consultant again and now got a colonoscopy next Saturday as I am concerned that they see a bit of low level damage and dismiss it as that but have not looked higher up. Sorry that you are in pain but wanted to share my concern re how far up they look. Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 07 Jun 2016 at 08:44

Thanks both John and Kev, I saw my oncologist yesterday. She's sending me for a colonoscopy and said just to use a mild laxative like Ispaghula Husk. Not sure I need that as I'm going fine and it's not hard stuff, but I'll try. The pain I've got has now reduced to a level that doesn't make me scream, so I am not quite so desperate. There's definitely something not right but hopefully it's nothing too sinister. Thanks again. Jim

 
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