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Bowel problems after RT

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User
Posted 10 Mar 2020 at 18:56

I am about 4 weeks out of radiotherapy (20 sessions, 60gy in total) and have 1 months life left in my second and final Zoladex injection.

During my eot discussion I explained that a previously innocent little haemorrhoid, which never bothered anyone, had grown into a vicious beast. I was prescribed Proctosedyl to use for about a week, and then to go onto Anusol. I continued with Anusol for a couple of weeks (apparently you shouldn’t use it for longer) as the pile is causing pain during and after pooing. I am also plagued by mucus farts, which means getting up through the night. I should add that neither the Proctosedyl nor the Anusol helped. Paracetamol barely helps. Is this condition likely to improve over time? My GP could offer no suggestions.

Also, my bowel movements are very erratic. They are mainly soft, and made about 3 times a day. However, occasionally they turn very soft and explosive. Again, will this improve? 

User
Posted 10 Mar 2020 at 20:12

I'm approaching a year since I finished my RT. The "mucus farts", which caused a few "accidents" in the first few months after RT gradually became less and less frequent and have now entirely disappeared. I do occasionally get mucus passed during bowel movements, but it's not a problem. Bowel frequency isn't the same as it was prior to RT; more frequent and much softer. Again nothing that causes a problem. Like Peter, I generally take an Imodium tablet in the morning if I'm going out for a day's walking, for example.

So things are different to before RT, but not in a way that I'd regard as in any way a problem.

Best wishes,

Chris

Edited by member 10 Mar 2020 at 23:19  | Reason: Not specified

User
Posted 10 Mar 2020 at 23:16

I'm 7 months on from EBRT and HDR brachy.
Mucus farts have diminished, but certainly not gone.
Bowel motions probably twice as often as they were, but not a problem.
Never taken imodium, and can hold if necessary - no incontinence.
I still pass fresh blood occasionally which has got a bit worse recently. Will mention at next appointment, but I believe that's not unexpected. No pain.
Occasionally get a couple of days of perfectly normal bowel movements!

User
Posted 11 Mar 2020 at 13:29
'Rules' for prostate cancer patients - add to the list, please!

1. Never pass a toilet. Use it.

2. Never trust a fart!

Hermit.

User
Posted 11 Mar 2020 at 18:26
Bill,

Sorry you have suffered as you relate. Interesting that you were prescribed Bepanthen cream which as you say is very mild. It was prescribed for me when I had some soreness with RT. For slight piles I also used another ointment which stung considerably for maybe 15 or so minutes and then reduced swelling and pain. It was much more effective than Anusol (spelling?) or anything else I tried but is no longer made, maybe because the smell was so strong people were turning to other things! When I am very occasionally sore, usually induced by having the runs I use an ointment called Xyloproct which contains Lidocaine and Hydrocortisone. It is a prescription ointment which helps and tempting fate say I have not needed to use for quite a time.

Barry
User
Posted 11 Mar 2020 at 10:15

I too suffered from the 'wet farts', with mucus and a bit of blood, both during and after my 20 sessions of therapy. The Radiotherapist prescribed a preparation called 'Budenofalk 2mg rectal foam' - basically small cans of 'shaving foam' which you inject into the bowel via a cardboard nozzle (the foam, not the can!). Easy and painless. It is a steroidal product and it seemed to calm things down very effectively. I had a pack of 10 but only needed to use seven of them before the problem sorted itself out. Worth asking about.
regards,
Hermit

Edited by member 11 Mar 2020 at 10:17  | Reason: Not specified

User
Posted 25 Jun 2020 at 09:23

Yes, as Lyn says, tell the radiographers. They can judge if you need some help, or just advise if a symptom is expected and can be ignored.

The sensation of needing to do a #2 when there's nothing there is sufficiently common during RT, it's pretty much expected. It even has a medical name (which I've forgotten).

This is why it's really important not to strain to try and go. There may be nothing there, but the straining can break blood vessels and cause more bleeding. You'll probably get some bleeding anyway - that's also expected, but you don't want to make it worse than it would have been. When you go, don't be in a rush, take a book or a smartphone with you if necessary. (Don't spend too long on a loo seat though - it's not great for circulation in the legs.)

User
Posted 25 Jun 2020 at 14:59

The constant urge to go even when there's nothing there is a medical condition called "tenesmus", and is a very, very common side-effect of RT. Those of us who've had RT might crack jokes about our experiences, looking back on it, but I well remember it being pretty unpleasant at the time.

Symptoms generally peak about 10-14 days after RT finishes, and then (in my case at least) subside rapidly. I had quite frequent "wet farts" for some months after, but these subsided in frequency and now, 15 months after finishing RT, it's probably 3-4 months since the last occurrence. Now all I get is mucus passed with bowel movements - that'll be with me for life. The other symptom I had in the first few months after treatment was proctitis, which is a burning sensation inside the back passage. This would last for 2-3 days at a time. It's probably 9 months now since that last happened.

I used to be a regular "once a day" man; now it's typically 2-3 times a day. Again that'll be with me for life. I take an Imodium tablet if I'm going out for the day and that takes care of that.

Chin up. I know it's probably pretty miserable at the moment but things will start getting better in a few weeks.

Best wishes,

Chris

Edited by member 25 Jun 2020 at 15:02  | Reason: Not specified

User
Posted 10 Mar 2020 at 19:56
I can't comment about the haemorrhoid situation but the mucus and bowel situation sounds same as me after RT and during Zoladex implants. The mucus did settle down and disappear on its own after a fairly short time. Had a few bowel accidents whilst out and about due to the urgency, movements were pretty soft for a while. I didn't take any medications it but have to say Immodium was great for days out etc and I was advised to eat more fibre as it actually helps bind thins together. No issues for quite a while now.

Peter

User
Posted 10 Mar 2020 at 22:39
Somtimes piles can be managed with medication but there can come a point where surgical intervention of one sort or another may be needed. This can be painful as two people I knew had it testified. But if needed procedure best done before you are old. I would get some informed advice on your situation.

My 'wet farts' and occasional 'runs' diminished over time and I believe this is typical.

Barry
User
Posted 11 Mar 2020 at 08:05

Originally Posted by: Online Community Member

Somtimes piles can be managed with medication but there can come a point where surgical intervention of one sort or another may be needed. This can be painful as two people I knew had it testified. But if needed procedure best done before you are old. I would get some informed advice on your situation.

 

 

I suffered with hemaroids for most of my adult life which also contributed to IBS. At times the pain was so bad I was completely incopasitated. I had some surgicaly removed but they returned within a month. The ten years or so leading up to Pca diagnosis I spent more time with a flare up then not. Also by then I had occasional anal fissures. Approaching Pca diagnosis over three years ago the DRE was agony and when told I needed a biopsy I was terrified. I was referred to a colorectal surgeon to try and find the underlying cause. Already prescribed a special cream many times, I can't remember what, something like rectogel or rectogesic I think, he told me to use it alternately with Bepanthen which is just nappy rash cream. Also sitting in a bowel of hot water helped. About three weeks later it was biopsy time and both my fissures and hemaroids were not to bad. The TRUS biopsy for me was nothing short of barbaric. I have continued to use Bepanthen liberally a bit inside and out after every shower and bowel movement ever since and have not had a single flare up since, something I could not imagine happening just over three years ago.

The point of this post is just to show those with chronic anal pain due to fissures or hemmoroids who like I used to, think there is never an end to it, that there is hope and light at the end of the tunnel.

Also Fibregel is very good for both diarria and constipation. When you are told to avoid fibre because of diarria they mean avoid non soluble fibre like wheat, bran and some vegetables etc. Fibregel is high in soluble fibre and absorbs moisture and forms bulk. 

 

Cheers

Bill
User
Posted 11 Mar 2020 at 10:31
The worst ones are when you don't realise you have done them until much later :( :(

I considered superglue at one point (only half kidding)

User
Posted 11 Mar 2020 at 13:54

Originally Posted by: Online Community Member
'Rules' for prostate cancer patients - add to the list, please!

1. Never pass a toilet. Use it.
2. Never trust a fart!

Hermit.

Rule 1: I take after my late father and have always followed it. Whenever I get to a new place I automatically scan for the nearest bog. Annoys the hell out of the wife!

Rule 2: found that out to my cost. 

Rule 3: wear trousers with zips not buttons

Edited by member 11 Mar 2020 at 13:55  | Reason: Addendum

User
Posted 11 Mar 2020 at 14:10

The zips not buttons is absolutely a thing!

User
Posted 13 Mar 2020 at 08:26
Just a quick update. I came across a leaflet from Harvard University Hospital covering my very topic. In it, they suggested after wiping with a babywipe (which I have been doing - cheap ones on offer from Morrisons), wipe with a Witch Hazel pad. Bit sceptical, but I ordered some from that South American river, and tried them. After a couple of days I was noticing reduced pain after a motion, and it seems like my pile is actually reducing in size. However, not having the neck of a giraffe, I've been unable to verify visually. My wife refuses to assist. I am now virtually pain-free (touch wood).

Thought it might be useful.

PS the mucus is reducing, but it would probably be doing this anyway.

User
Posted 13 Mar 2020 at 13:09

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Upload a photo Buffalo, we will give you feedback

😧😁

That really is funny but realistically your mobile phone camera is actually very useful in these circumstances.

I have a photo album on my iPhone which charts the progress of the spectacular bruising I had following my template biopsy 😁

User
Posted 13 Mar 2020 at 14:20

Originally Posted by: Online Community Member
That really is funny but realistically your mobile phone camera is actually very useful in these circumstances.

That reminds me, I think I might have been the first patient to hand my mobile to the HDR brachy nurse when I'm laying on my back with my legs in the air and ask her to take some pictures of all the brachy tubes hanging out of my perineum. (There are times when you are all so grateful we can't upload pictures here, even if you didn't know it.) We see each other occasionally in the corridors now and then, and always laugh as we pass by.

User
Posted 25 Jun 2020 at 00:34

Hope this isn't too late (3 and a bit months!) to post something on here, but I have just passed (pun intended) the half-way point in my EBRT (11 fractions out of 20). The last three days, the side-effects have seemed to multiply and intensify beyond belief! I had the pain while urinating last week, but now it seems to be growing quite a bit worse. But now, the new problem. I see you're all talking about mucus farts and the like, but is this what you mean by it? I believe that I have developed Radiation Proctitis (I love looking things up, me!) Which means that I feel a constant urge to empty my bowels all day, every day and when I do go, or even just try to go, I either pass nothing, or small bits of brown mucus-y stuff. With the latest development, being blood. I just went ten minutes ago and, as usual, passed about 20 different little bits of blood, with nothing else. I am also getting quite intense pain in the bowel region, which again, lasts all day. Then there is the other thing, where I think I need to go and actually start going, before being able to do anything about it! Thankfully, that has only happened twice since the weekend. I now dare not leave the house without wearing a pad, which is embarassing and really hot, especially in this mini-heatwave! I tried to post this elsewhere on a new post, but it just says "Access Denied!" and won't let me post it, so I hope, as this seems the most similar to my problem, someone sees this and can maybe suggest something to help? Thanks!!

User
Posted 25 Jun 2020 at 01:29
Mention it to the RT team tomorrow - they may be able to prescribe colifoam or its equivalent - or at least review your diet with you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jun 2020 at 16:54

Thank you all very much! That helps a lot. Yes it's a very lonely path going to RT on your own, especially during this whole lockdown/virus thing, so getting some help from those in the know gives me a lot of confidence! I said something to the radiographer and nurses today and they've arranged for me to see a doctor tomorrow, (who had just gone home five minutes before I arrived). I was more of a 'once every four days' man myself, but that's in the past! Going once a day is a surprise to me, but now I've gone 14 times in 24 hours, I'm quite exhausted! Anyway, thanks again for your help. Colifoam you say? I hope it's not made from cauliflowers! But I'll mention it. They don't seem to like giving anything out and only ever talk about paracetamol (or Tamsulosin which I really can't stand)!

User
Posted 02 Jul 2020 at 17:38

Ross
For most of my adult life I suffered with piles and fissures to the degree that the pain was so bad that I couldn't tell the difference between needing to fart or a bowel movement. About four years ago I was told by a colorectal surgeon to use Bepanthen which is nappy rash cream. He said it's perfectly safe and you can't use to much, either in or out. It relieved the soreness and helped with healing very quickly. I use it still after every bowel movement and I haven't had a flair up since. Might be worth a try.

Good luck
Cheers
Bill

Edited by member 02 Jul 2020 at 17:59  | Reason: Not specified

User
Posted 04 Jul 2020 at 22:17
Ross, the peeing every hour is entirely normal in the final stages of RT. It'll probably continue or even get worse until about 10-14 days after your RT ends, but then should quickly improve. I remember being absolutely shattered through having to pee every 45m all night long and hence complete lack of sleep.

The end is in sight. This is is the tough part, but you WILL get through it.

Very best,

Chris

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User
Posted 10 Mar 2020 at 19:56
I can't comment about the haemorrhoid situation but the mucus and bowel situation sounds same as me after RT and during Zoladex implants. The mucus did settle down and disappear on its own after a fairly short time. Had a few bowel accidents whilst out and about due to the urgency, movements were pretty soft for a while. I didn't take any medications it but have to say Immodium was great for days out etc and I was advised to eat more fibre as it actually helps bind thins together. No issues for quite a while now.

Peter

User
Posted 10 Mar 2020 at 20:03
Thanks for that. I remember now the nurse gave the same advice regarding Immodium. Paradoxically I was advised to avoid high fibre for a while! Although my first thought was to increase fibre for the same reasons you give.

I’m finding that wiping with a Witch Hazel pad after cleaning with a babywipe helps reduce the pain.

User
Posted 10 Mar 2020 at 20:12

I'm approaching a year since I finished my RT. The "mucus farts", which caused a few "accidents" in the first few months after RT gradually became less and less frequent and have now entirely disappeared. I do occasionally get mucus passed during bowel movements, but it's not a problem. Bowel frequency isn't the same as it was prior to RT; more frequent and much softer. Again nothing that causes a problem. Like Peter, I generally take an Imodium tablet in the morning if I'm going out for a day's walking, for example.

So things are different to before RT, but not in a way that I'd regard as in any way a problem.

Best wishes,

Chris

Edited by member 10 Mar 2020 at 23:19  | Reason: Not specified

User
Posted 10 Mar 2020 at 22:39
Somtimes piles can be managed with medication but there can come a point where surgical intervention of one sort or another may be needed. This can be painful as two people I knew had it testified. But if needed procedure best done before you are old. I would get some informed advice on your situation.

My 'wet farts' and occasional 'runs' diminished over time and I believe this is typical.

Barry
User
Posted 10 Mar 2020 at 23:16

I'm 7 months on from EBRT and HDR brachy.
Mucus farts have diminished, but certainly not gone.
Bowel motions probably twice as often as they were, but not a problem.
Never taken imodium, and can hold if necessary - no incontinence.
I still pass fresh blood occasionally which has got a bit worse recently. Will mention at next appointment, but I believe that's not unexpected. No pain.
Occasionally get a couple of days of perfectly normal bowel movements!

User
Posted 11 Mar 2020 at 06:57

I had few bowel issues until 6 months after radiotherapy when I started the mucus/ fresh blood thing. It got worse and after a year of putting a suppository up my bottom twice a day with minimal effect I eventually had laser treatment . This 99% resolved the issue however if I drink too much with spicy food it will bleed again. Never painful just annoying. 

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 11 Mar 2020 at 08:05

Originally Posted by: Online Community Member

Somtimes piles can be managed with medication but there can come a point where surgical intervention of one sort or another may be needed. This can be painful as two people I knew had it testified. But if needed procedure best done before you are old. I would get some informed advice on your situation.

 

 

I suffered with hemaroids for most of my adult life which also contributed to IBS. At times the pain was so bad I was completely incopasitated. I had some surgicaly removed but they returned within a month. The ten years or so leading up to Pca diagnosis I spent more time with a flare up then not. Also by then I had occasional anal fissures. Approaching Pca diagnosis over three years ago the DRE was agony and when told I needed a biopsy I was terrified. I was referred to a colorectal surgeon to try and find the underlying cause. Already prescribed a special cream many times, I can't remember what, something like rectogel or rectogesic I think, he told me to use it alternately with Bepanthen which is just nappy rash cream. Also sitting in a bowel of hot water helped. About three weeks later it was biopsy time and both my fissures and hemaroids were not to bad. The TRUS biopsy for me was nothing short of barbaric. I have continued to use Bepanthen liberally a bit inside and out after every shower and bowel movement ever since and have not had a single flare up since, something I could not imagine happening just over three years ago.

The point of this post is just to show those with chronic anal pain due to fissures or hemmoroids who like I used to, think there is never an end to it, that there is hope and light at the end of the tunnel.

Also Fibregel is very good for both diarria and constipation. When you are told to avoid fibre because of diarria they mean avoid non soluble fibre like wheat, bran and some vegetables etc. Fibregel is high in soluble fibre and absorbs moisture and forms bulk. 

 

Cheers

Bill
User
Posted 11 Mar 2020 at 10:15

I too suffered from the 'wet farts', with mucus and a bit of blood, both during and after my 20 sessions of therapy. The Radiotherapist prescribed a preparation called 'Budenofalk 2mg rectal foam' - basically small cans of 'shaving foam' which you inject into the bowel via a cardboard nozzle (the foam, not the can!). Easy and painless. It is a steroidal product and it seemed to calm things down very effectively. I had a pack of 10 but only needed to use seven of them before the problem sorted itself out. Worth asking about.
regards,
Hermit

Edited by member 11 Mar 2020 at 10:17  | Reason: Not specified

User
Posted 11 Mar 2020 at 10:31
The worst ones are when you don't realise you have done them until much later :( :(

I considered superglue at one point (only half kidding)

User
Posted 11 Mar 2020 at 13:29
'Rules' for prostate cancer patients - add to the list, please!

1. Never pass a toilet. Use it.

2. Never trust a fart!

Hermit.

User
Posted 11 Mar 2020 at 13:54

Originally Posted by: Online Community Member
'Rules' for prostate cancer patients - add to the list, please!

1. Never pass a toilet. Use it.
2. Never trust a fart!

Hermit.

Rule 1: I take after my late father and have always followed it. Whenever I get to a new place I automatically scan for the nearest bog. Annoys the hell out of the wife!

Rule 2: found that out to my cost. 

Rule 3: wear trousers with zips not buttons

Edited by member 11 Mar 2020 at 13:55  | Reason: Addendum

User
Posted 11 Mar 2020 at 14:10

The zips not buttons is absolutely a thing!

User
Posted 11 Mar 2020 at 18:26
Bill,

Sorry you have suffered as you relate. Interesting that you were prescribed Bepanthen cream which as you say is very mild. It was prescribed for me when I had some soreness with RT. For slight piles I also used another ointment which stung considerably for maybe 15 or so minutes and then reduced swelling and pain. It was much more effective than Anusol (spelling?) or anything else I tried but is no longer made, maybe because the smell was so strong people were turning to other things! When I am very occasionally sore, usually induced by having the runs I use an ointment called Xyloproct which contains Lidocaine and Hydrocortisone. It is a prescription ointment which helps and tempting fate say I have not needed to use for quite a time.

Barry
User
Posted 13 Mar 2020 at 08:26
Just a quick update. I came across a leaflet from Harvard University Hospital covering my very topic. In it, they suggested after wiping with a babywipe (which I have been doing - cheap ones on offer from Morrisons), wipe with a Witch Hazel pad. Bit sceptical, but I ordered some from that South American river, and tried them. After a couple of days I was noticing reduced pain after a motion, and it seems like my pile is actually reducing in size. However, not having the neck of a giraffe, I've been unable to verify visually. My wife refuses to assist. I am now virtually pain-free (touch wood).

Thought it might be useful.

PS the mucus is reducing, but it would probably be doing this anyway.

User
Posted 13 Mar 2020 at 08:52
Upload a photo Buffalo, we will give you feedback
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 13 Mar 2020 at 09:00

Originally Posted by: Online Community Member
Upload a photo Buffalo, we will give you feedback

😧😁

That really is funny but realistically your mobile phone camera is actually very useful in these circumstances.

User
Posted 13 Mar 2020 at 09:40

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Upload a photo Buffalo, we will give you feedback

😧😁

That really is funny but realistically your mobile phone camera is actually very useful in these circumstances.

As long as the mucus farts stay away ...

User
Posted 13 Mar 2020 at 09:42

Originally Posted by: Online Community Member
Upload a photo Buffalo, we will give you feedback

I’ve only recently learned how to find my backside with both hands. What chance do I have with my medium-format camera?

User
Posted 13 Mar 2020 at 13:09

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Upload a photo Buffalo, we will give you feedback

😧😁

That really is funny but realistically your mobile phone camera is actually very useful in these circumstances.

I have a photo album on my iPhone which charts the progress of the spectacular bruising I had following my template biopsy 😁

User
Posted 13 Mar 2020 at 13:21
Oh well, something to show the grand-kids on a wet afternoon.
User
Posted 13 Mar 2020 at 14:17
Exactly 😁
User
Posted 13 Mar 2020 at 14:20

Originally Posted by: Online Community Member
That really is funny but realistically your mobile phone camera is actually very useful in these circumstances.

That reminds me, I think I might have been the first patient to hand my mobile to the HDR brachy nurse when I'm laying on my back with my legs in the air and ask her to take some pictures of all the brachy tubes hanging out of my perineum. (There are times when you are all so grateful we can't upload pictures here, even if you didn't know it.) We see each other occasionally in the corridors now and then, and always laugh as we pass by.

User
Posted 13 Mar 2020 at 14:29

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
That really is funny but realistically your mobile phone camera is actually very useful in these circumstances.

That reminds me, I think I might have been the first patient to hand my mobile to the HDR brachy nurse when I'm laying on my back with my legs in the air and ask her to take some pictures of all the brachy tubes hanging out of my perineum. (There are times when you are all so grateful we can't upload pictures here, even if you didn't know it.) We see each other occasionally in the corridors now and then, and always laugh as we pass by.

I had a surreal conversation with one of the young nurses comparing embarrassing wind experiences.

User
Posted 13 Mar 2020 at 17:58
A friend of ours went for his vasectomy, sat back in the chair thing with his tackle poking out of the hole in the surgical sheet and his ex walked in - she was one of the nurses.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jun 2020 at 00:34

Hope this isn't too late (3 and a bit months!) to post something on here, but I have just passed (pun intended) the half-way point in my EBRT (11 fractions out of 20). The last three days, the side-effects have seemed to multiply and intensify beyond belief! I had the pain while urinating last week, but now it seems to be growing quite a bit worse. But now, the new problem. I see you're all talking about mucus farts and the like, but is this what you mean by it? I believe that I have developed Radiation Proctitis (I love looking things up, me!) Which means that I feel a constant urge to empty my bowels all day, every day and when I do go, or even just try to go, I either pass nothing, or small bits of brown mucus-y stuff. With the latest development, being blood. I just went ten minutes ago and, as usual, passed about 20 different little bits of blood, with nothing else. I am also getting quite intense pain in the bowel region, which again, lasts all day. Then there is the other thing, where I think I need to go and actually start going, before being able to do anything about it! Thankfully, that has only happened twice since the weekend. I now dare not leave the house without wearing a pad, which is embarassing and really hot, especially in this mini-heatwave! I tried to post this elsewhere on a new post, but it just says "Access Denied!" and won't let me post it, so I hope, as this seems the most similar to my problem, someone sees this and can maybe suggest something to help? Thanks!!

User
Posted 25 Jun 2020 at 01:29
Mention it to the RT team tomorrow - they may be able to prescribe colifoam or its equivalent - or at least review your diet with you.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 25 Jun 2020 at 09:23

Yes, as Lyn says, tell the radiographers. They can judge if you need some help, or just advise if a symptom is expected and can be ignored.

The sensation of needing to do a #2 when there's nothing there is sufficiently common during RT, it's pretty much expected. It even has a medical name (which I've forgotten).

This is why it's really important not to strain to try and go. There may be nothing there, but the straining can break blood vessels and cause more bleeding. You'll probably get some bleeding anyway - that's also expected, but you don't want to make it worse than it would have been. When you go, don't be in a rush, take a book or a smartphone with you if necessary. (Don't spend too long on a loo seat though - it's not great for circulation in the legs.)

User
Posted 25 Jun 2020 at 14:59

The constant urge to go even when there's nothing there is a medical condition called "tenesmus", and is a very, very common side-effect of RT. Those of us who've had RT might crack jokes about our experiences, looking back on it, but I well remember it being pretty unpleasant at the time.

Symptoms generally peak about 10-14 days after RT finishes, and then (in my case at least) subside rapidly. I had quite frequent "wet farts" for some months after, but these subsided in frequency and now, 15 months after finishing RT, it's probably 3-4 months since the last occurrence. Now all I get is mucus passed with bowel movements - that'll be with me for life. The other symptom I had in the first few months after treatment was proctitis, which is a burning sensation inside the back passage. This would last for 2-3 days at a time. It's probably 9 months now since that last happened.

I used to be a regular "once a day" man; now it's typically 2-3 times a day. Again that'll be with me for life. I take an Imodium tablet if I'm going out for the day and that takes care of that.

Chin up. I know it's probably pretty miserable at the moment but things will start getting better in a few weeks.

Best wishes,

Chris

Edited by member 25 Jun 2020 at 15:02  | Reason: Not specified

User
Posted 25 Jun 2020 at 16:54

Thank you all very much! That helps a lot. Yes it's a very lonely path going to RT on your own, especially during this whole lockdown/virus thing, so getting some help from those in the know gives me a lot of confidence! I said something to the radiographer and nurses today and they've arranged for me to see a doctor tomorrow, (who had just gone home five minutes before I arrived). I was more of a 'once every four days' man myself, but that's in the past! Going once a day is a surprise to me, but now I've gone 14 times in 24 hours, I'm quite exhausted! Anyway, thanks again for your help. Colifoam you say? I hope it's not made from cauliflowers! But I'll mention it. They don't seem to like giving anything out and only ever talk about paracetamol (or Tamsulosin which I really can't stand)!

User
Posted 27 Jun 2020 at 18:24

Well. I saw one of the Oncology doc's on Friday and he gave me some suppositories called Uniroid HC. They're supposed to help reduce the inflammation around the old back passage. But I'm worried, as they only have 12 in the whole pack and I've gotten through six already! (I've had the usual 14-15 trips to the loo since yesterday) It says "Insert one in the morning and another in the evening and one after each bowel movement", well if I'd done that, I'd have run out already! The second one, used yesterday afternoon, stayed in working for about six hours! I thought I'd found the answer for a moment. But all of the other ones have come out in about half an hour to two hours. I don't know if these are anything like the Colifoam you mentioned Lyn? But I wish they'd given me a bigger pack. Much bigger! I even looked if I could buy some myself, but online pharmacies sell them from £19.95 a pack to three times that figure or more! I felt fairly comfortable with that long-lasting one yesterday, but, even after having the most normal #2 session this morning for the first time since last Sunday, I can't help but passing things from both sides at once, even if it's only mucus or blood. They're meant to stop all that, but don't seem to do much to help! The ingredients are 5mg Hydrocortisone and 5mg Cinchocaine Hydrochloride with the remainder made up with hard fat. So they have actually gone and turned me into a 'lard-ass'! The second ingredient is meant to be an anaesthetic, but doesn't seem to anaesthetise the back passage anywhere near as much as it should. One site even compares the effects of 'cinchocaine' with actual cocaine, though I haven't been getting much of a high off of these yet! 

I try not to strain Andy62, but the old passage seemingly has a mind of it's own and doesn't require any help from me! The moment I take my place on the podium, off it goes! Though I don't add any extra pressure.

If anyone has any other names of products that work (or work better), maybe I could mention them on Monday? Or at least try to get more of the same. (I did mention Colifoam, but he didn't even address the product at all).

He did review my diet with me last Monday, so I'm now on all bland, low-fibre stuff, though that hasn't made much of a difference. Yet.

Thanks again everyone!

Edited by member 27 Jun 2020 at 18:26  | Reason: Not specified

User
Posted 27 Jun 2020 at 19:09

Originally Posted by: Online Community Member
I try not to strain Andy62, but the old passage seemingly has a mind of it's own and doesn't require any help from me! The moment I take my place on the podium, off it goes! Though I don't add any extra pressure. If anyone has any other names of products that work (or work better), maybe I could mention them on Monday? Or at least try to get more of the same. (I did mention Colifoam, but he didn't even address the product at all). He did review my diet with me last Monday, so I'm now on all bland, low-fibre stuff, though that hasn't made much of a difference. Yet.

Sounds like you are not needing to strain. It's when you think there's something there when there isn't - straining for that (or any other reason) isn't good.

Mount Vernon gave me small tubes of something called Hydrogel by Activheal for a sore arse, and they worked well. It's just a water based jell, and it might be that KY jelly would have worked instead. I took a tube into a few pharmacies, but none could get it. I think it's this.

I had to go onto a low fibre diet. One weekend, my body craving vegetables and thinking I had two days for it to go through before RT restarted, I eat a whole broccoli. Bloody hell, that was a mega disaster. Stuck in the bathroom through to Monday morning, arse sore and bleeding. It was that Monday they gave me the hydrogel. They also gave me Instillagel in case the Hydrogel didn't work, but it did.

User
Posted 27 Jun 2020 at 23:21

Well I'm lucky then, in that I can't stand broccoli! I much prefer cauliflower and guess what we've got for lunch tomorrow? I'll just have to have a smaller portion...

I could try some KY Jelly, but it looks different somehow. But thanks for the details of Hydrogel and the other one. I'll mention it to my Onco dr. and see what he thinks. I had the bright idea of trying some Imodium and then inserting another suppository one hour later. That lasted for three hours until It backfired on me. I had hoped for a bit of a longer break from the bathroom!

So I hope they can find something more suitable for me Monday, as these things only work so far but no further.

User
Posted 02 Jul 2020 at 16:11

Well here I am again, with 17 fractions down and 3 to go. The Budenofalk and Colifoam mentioned on here, seem to be unavailable to me, (my hospital won't prescribe them), although they have helped others. The 'Uniroid HC' suppositories I am on don't help one bit and I am in almost agonising pain downstairs! They may be reducing the bowel inflammation, though don't give one jot of relief. No painkillers touch it either. I was told not to use any products containing metal, so Anusol or Sudocrem is out of the question. Maybe a cream without zinc in it may be available? And as some have said above, Fybogel may be a good idea? Or is that only for after the RT is over? Andy62, what you said about Hydrogel, is that for inside, outside, or somewhere around the area please?

Also, did anyone else have to get to pee about once every hour, like I do?

If anyone can suggest any other way of dealing with the pain, I would be very grateful, thanks!

Edited by member 02 Jul 2020 at 16:15  | Reason: Not specified

User
Posted 02 Jul 2020 at 17:38

Ross
For most of my adult life I suffered with piles and fissures to the degree that the pain was so bad that I couldn't tell the difference between needing to fart or a bowel movement. About four years ago I was told by a colorectal surgeon to use Bepanthen which is nappy rash cream. He said it's perfectly safe and you can't use to much, either in or out. It relieved the soreness and helped with healing very quickly. I use it still after every bowel movement and I haven't had a flair up since. Might be worth a try.

Good luck
Cheers
Bill

Edited by member 02 Jul 2020 at 17:59  | Reason: Not specified

User
Posted 02 Jul 2020 at 22:02

Thanks Bill63. My partner went out and got me some earlier, so I'll definitely give it a go. We have plenty of Sudocrem and Anusol, but I can't use it, as a doc warned me not to use anything with metal in it. He didn't explain why, though maybe it's something to do with the RT?

User
Posted 03 Jul 2020 at 01:11
Bepathen is a very mild cream often used on babies for nappy rash. When it was prescribed for me for the sore area caused by RT, I was told not to rub it in but just to dab a little onto the affected area.

All my life I have tended to be constipated for most of the time and tried various things for it. (I recall my mother used to soak senakot leaves in water years ago, so perhaps a family thing). Anyway, I attribute all the straining over the years to me now having a hernia which pushes out when I strain. My GP has now prescribed a powder 'For chronic constipation' and 'For faecal impactation. This is called CosmoCol which is disolved into water. I will have to see how this works.

I believe that having piles/constipation is particularly exacerbated during RT and for some time thereafter. It is something that people who suffer in this way should consider when they are due to have RT.

Barry
User
Posted 03 Jul 2020 at 22:30

That reminds me of me Old Barry! I was constipated for most of my childhood and teens/early twenties. My mum used to swear by 'Milk of Magnesia', but I used to swear at it, as it never worked! It wasn't until my mid twenties (having tried most other things to no avail), when I discovered 'Fybogel', which someone mentioned elsewhere, maybe on this post? I just used one sachet of that and I think all the backlog that had been building up for a quarter of a century was suddenly released that night! It was a bit like the 'dambusters' had paid a visit. But I haven't been so badly bunged up since! So I can highly recommend trying everything on the market until you find your perfect product. I know those glycerin suppositories can be quite good too. 

My partner (disabled/paraplegic wheelchair user) was given CosmoCol, but it didn't work for her, which is why we should try anything we can, till it works.

Bepanthen works for me a bit, but I've only used it twice so far. 

For piles, I've found the best thing (if they're internal) are Anusol suppositories, though you can't supposedly use them during RT, as they contain metal (zinc I think).

User
Posted 04 Jul 2020 at 22:17
Ross, the peeing every hour is entirely normal in the final stages of RT. It'll probably continue or even get worse until about 10-14 days after your RT ends, but then should quickly improve. I remember being absolutely shattered through having to pee every 45m all night long and hence complete lack of sleep.

The end is in sight. This is is the tough part, but you WILL get through it.

Very best,

Chris

User
Posted 18 Jul 2020 at 16:20

Thanks for those words of confidence Chris! Sorry it took me so long to see this post too. I've just tried to start a new conversation again, but it still says "Access Denied!" I don't know what is so secret about this forum and why I'm never allowed to post anything new anymore! (I even cleared my cache, but to no avail) So here I'm posting what I tried to post earlier on a new post.

Yes the peeing every hour was bad then, but is thankfully less of a problem now, than it was, but I still go after about one hour the first 'session', then it's about two to two and a half hours the second and lets me sleep for up to three hours towards the end of the night, so only about 3-4 sessions in all now.

Here's what I'm not 'allowed' to post anywhere else:

I have now finished my RT and (hopefully) am over it. My Hormone Therapy will continue until about March/April 2023. I am receiving some help from an organisation who needed me to provide them with a diagnosis and treatment letter and due to this letter/report, this is the first time in three years, that I have actually learned which type of Prostate Cancer that I have/had and the associated treatments related to it! For some reason, my GP, Urologist and Oncology Consultant didn't seem to want me to know the full diagnosis. (?) I don't know why this is, but am glad that I finally know exactly what the reports said about it. I knew I was a 3+4=7, but that's about it.

Taken from the diagnosis report: Diagnosis: Primary - C61 - High risk prostate cancer; rT3a/4 (apex of base extending along capsule apical disease possibly involving rectum) Gleason 3+4=7 left anterior right anterior right posterior 50% most involved core. Proposed treatment: 3 years hormone therapy, RT 60Gy/20# Diagnosed Nov 2, 2017 (Active)

So there you go, three whole bloomin' years to find out just what's wrong with me and what they're going to do (have done to date) about it! Why on earth should that need to be kept from me? But I'm just glad that the RT is over and that the side effects are slowly receding. It does also say that "We anticipate this to be successful in curing his disease." Which is a flipping great weight off my mind! 😄

 

 

User
Posted 19 Jul 2020 at 06:15

Originally Posted by: Online Community Member
Andy62, what you said about Hydrogel, is that for inside, outside, or somewhere around the area please?

Sorry, answering a bit late now, but it worked for both. It is just water held in place by a gel, and is apparently to promote healing where the wound should stay wet, for which is specifically lists radiation burns, but also worked really well on the outside for a sore arse due to wiping very frequently.

Just an update 11 months after RT in the context of the thread...

Mucus farts gone, probably a few months a ago.
Still consuming less fibre than I used to, to keep stools firm.
Still slightly more mucus than originally when pooing, but that actually makes pooing easier than it was originally - slips out with ease, and rarely any mess when wiping.
Farts - can now tell if they're going to be safe or not beforehand, and let the safe ones out.
Painless rectal bleeding - about once a week, and somewhat counter intuitively, more likely with looser stools.
Going twice as often as I used to, but no problem holding on if not convenient.

If it stayed like this, I wouldn't have any complaints. Will ask onco about bleeding though, as with that, I wouldn't get any useful indication of future bowel cancer.

 
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