Bowel issues in RT

User

Posted 02 Feb 2016 at 16:49

Hi folks

I'm now mid RT having had session 17 today, 20 more to go. Over this past weekend I've had a lot of diarrhoea and pain in the lower abdomen and rectum. I've seen the nurse and have been prescribed loperamide, buscopan and proctosedyl. This has eased things a little but I still feel like I need to open my bowels all the time, specifically a feeling just inside the rectum, it is not painful but uncomfortable. Is this likely to get worse during, and after, the remaining treatment? Anyone had any tips on improving things?

I also wonder whether coffee might adversely affect the situation. I don't drink a lot but wondered if if had an effect.

Thanks for reading.

Pat.

User

Posted 02 Feb 2016 at 18:50

Hi Pat,

Sorry about how you are feeling but I have definitely been there.

I finished RT a year ago after the usual 37 fractions.

The best advice I can give is to avoid ALL caffeine based drinks as well as gaseous fizzy drinks. And to mostly drink tap water.

This should be at room temperature. If the water is too cold than it can make your symptoms worse.

I 'treated ' myself initially to coffee but realised that it was not doing me too much good. So I stopped.

Try just hot water instead. It's very fashionable at the moment !

Also alcohol can irritate too.

Be careful about food. The obvious baked beans are a no no.

On Christmas Eve at the Centre ,the mantra was " OK lads , just remember no Christmas Pud nor any Brussel Sprouts this Christmas!"

I'm sure the radiologists went through a diet sheet with you so you'll not need to be reminded to avoid fried foods etc.

I was prescribed loperamide and normacol. The combination worked very well for me.

Keep exercising . You should aim for a short daily walk although by the mid way stage you probably do not want to go too far from a toilet.

I recall having to rush back , knowing that 'rushing made it worse ' and it was better to go slowly and suffer the consequences.

Either way I was a loser.

Try allowing more time to closer your bowels each morning before going out.

Are you still working?

I worked each morning for the first 7 out of 9 weeks ,mornings only.

I woke up an hour earlier to give myself the best time possible to 'have a clear out ' before leaving for work.

Apologies if that sounds too crude but it worked for me.

So at the end of the 37 fractions you will be 'cooking' very nicely. You're let go by your Centre and let out into the big wide world.

And you'll still have to cope with your bowels. For me it took about 5-7 days for them to settle and then quite quickly to revert to normal.

I still took the loperamide / normacol combo and if fact still use it often even now. My GP is quite happy about this.

Anyway , good luck. Really you haven't long to go now and it'll soon be over.

Best wishes ,

John

User

Posted 10 Feb 2016 at 19:37

Yes, I remember all of that. I had some of those problems too but it settled in time.

And no ,I wasn't able to do much about it. I just tried to 'live carefully' - not stray too far away from toilets for example.

However it didn't cause too much of a problem for me and I was able to continue working for 7 weeks. And my colleagues were understanding.

Hopefully it'll settle for you soon.

User

Posted 11 Feb 2016 at 21:52

Yes, it was a trial about three years ago but is now becoming more and more common. Usually, the 20 fractions (some people have 19) are at a higher dose than is given to men having 37 so the cumulative effect is the same but with fewer side effects. John had 20 fractions at 3Gy

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User

Posted 02 Feb 2016 at 17:35

Hello Pat,
There has been some conversation on here recently regarding bowels and the effects of RT so I am sure somebody will come along to help you.
I believe a low fibre diet is supposed to be helpful.
I would leave off the coffee if you can or change to organic De-caffeinated. The same goes for tea if you drink a lot of it.

If you aren't drinking much of it then might be best left alone for the time being.

I have IBS and have also had loperamide, I still take Buscopan (although that has recently been changed to Mebererine) and proctosedyl is also prescribed for people with piles.
It can be soothing if the loose bowels have irritated the skin but don't use it too much or too often as it can in itself cause problems.

I am sure that there will be help along soon so hang around until it comes

We can't control the winds - but we can adjust our sails

User

Posted 02 Feb 2016 at 18:48

Hi Pat,

Sorry about how you are feeling but I have definitely been there.

I finished RT a year ago after the usual 37 fractions.

The best advice I can give is to avoid ALL caffeine based drinks as well as gaseous fizzy drinks. And to mostly drink tap water.

This should be at room temperature. If the water is too cold than it can make your symptoms worse.

I 'treated ' myself initially to coffee but realised that it was not doing me too much good. So I stopped.

Try just hot water instead. It's very fashionable at the moment !

Also alcohol can irritate too.

Be careful about food. The obvious baked beans are a no no.

On Christmas Eve at the Centre ,the mantra was " OK lads , just remember no Christmas Pud nor any Brussel Sprouts this Christmas!"

I'm sure the radiologists went through a diet sheet with you so you'll not need to be reminded to avoid fried foods etc.

I was prescribed loperamide and normacol. The combination worked very well for me.

Keep exercising . You should aim for a short daily walk although by the mid way stage you probably do not want to go too far from a toilet.

I recall having to rush back , knowing that 'rushing made it worse ' and it was better to go slowly and suffer the consequences.

Either way I was a loser.

Try allowing more time to closer your bowels each morning before going out.

Are you still working?

I worked each morning for the first 7 out of 9 weeks ,mornings only.

I woke up an hour earlier to give myself the best time possible to 'have a clear out ' before leaving for work.

Apologies if that sounds too crude but it worked for me.

So at the end of the 37 fractions you will be 'cooking' very nicely. You're let go by your Centre and let out into the big wide world.

And you'll still have to cope with your bowels. For me it took about 5-7 days for them to settle and then quite quickly to revert to normal.

I still took the loperamide / normacol combo and if fact still use it often even now. My GP is quite happy about this.

Anyway , good luck. Really you haven't long to go now and it'll soon be over.

Best wishes ,

John

User

Posted 02 Feb 2016 at 18:50

Hi Pat,

Sorry about how you are feeling but I have definitely been there.

I finished RT a year ago after the usual 37 fractions.

The best advice I can give is to avoid ALL caffeine based drinks as well as gaseous fizzy drinks. And to mostly drink tap water.

This should be at room temperature. If the water is too cold than it can make your symptoms worse.

I 'treated ' myself initially to coffee but realised that it was not doing me too much good. So I stopped.

Try just hot water instead. It's very fashionable at the moment !

Also alcohol can irritate too.

Be careful about food. The obvious baked beans are a no no.

On Christmas Eve at the Centre ,the mantra was " OK lads , just remember no Christmas Pud nor any Brussel Sprouts this Christmas!"

I'm sure the radiologists went through a diet sheet with you so you'll not need to be reminded to avoid fried foods etc.

I was prescribed loperamide and normacol. The combination worked very well for me.

Keep exercising . You should aim for a short daily walk although by the mid way stage you probably do not want to go too far from a toilet.

I recall having to rush back , knowing that 'rushing made it worse ' and it was better to go slowly and suffer the consequences.

Either way I was a loser.

Try allowing more time to closer your bowels each morning before going out.

Are you still working?

I worked each morning for the first 7 out of 9 weeks ,mornings only.

I woke up an hour earlier to give myself the best time possible to 'have a clear out ' before leaving for work.

Apologies if that sounds too crude but it worked for me.

So at the end of the 37 fractions you will be 'cooking' very nicely. You're let go by your Centre and let out into the big wide world.

And you'll still have to cope with your bowels. For me it took about 5-7 days for them to settle and then quite quickly to revert to normal.

I still took the loperamide / normacol combo and if fact still use it often even now. My GP is quite happy about this.

Anyway , good luck. Really you haven't long to go now and it'll soon be over.

Best wishes ,

John

User

Posted 02 Feb 2016 at 22:25

Hi John

Many thanks for taking the trouble to reply, I'll certainly follow your advice regarding caffeine and exercise. Strangely, I have never been given any dietary advice by anyone since being diagnosed, perhaps I should ask them tomorrow.

I'm glad to hear that it might not take too long after treatment for things to start getting back to normal. Were you able to eat normally quite soon too?

I'm lucky in that I retired early, the cancer was a retirement present :) I don't have to go to work during RT but I do have a car journey of just over an hour each way to get to the hospital so that proves interesting.

Thanks again for you help.

Pat

User

Posted 03 Feb 2016 at 01:10

How depressing - I struggle with the notion that you were not given any dietary advice by the radiology suite prior to the RT starting. John was given a huge list of instructions including NO caffeine, NO fizzy drinks, NO alcohol and LOTS of juice / water (especially cranberry). This was to be followed until two weeks after RT ended although J has remained on decaf ever since.

A note of caution though - speak to the team before you change anything. While we are all well-meaning with our advice, there are two dietary camps for RT .... and with good reason. The majority of men on this forum seem to be told to have a high fibre diet to keep the bowel empty but some are told the opposite - a low fibre diet to minimise gas perhaps. Some are given enemas, some are not. Some are prescribed meds to keep the stools loose, some are not. What your RT suite will be keen on is not changing things too much in terms of the shape, lay and fullness of your bowel as the planning was all done on however your bowel was on that first scanning day when you got your tattoos.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 03 Feb 2016 at 08:15

Pat.

I was lucky in that I only had a 5 minute drive the radio therapy centre. I was able to drink the 450 ml of water at home and stroll in for the treatment . If all went well I could be home quite soon afterwards. But it didn't always go to plan and once I was there for 3 hours !

You are the same age as me. I chose to retire 7 months after I finished RT.
I went back to work on a phased return , mornings only for 6-8 weeks but found that I was wondering why I was there.
Work really started to mean nothing to me and I wanted to do different things.
I did not hate work , I fact I really liked it there. But I knew for me that it was time to go. Quit whilst you're ahead!

So I was able to take some of my pensions early and took advantage of the changes to pensions this year.
I'm having a wonderful time now. Really enjoying every minute. Learning new skills and seeing family and friends.
I had a wonderful send off by my colleagues.
No one was surprised I left.

So there has been a silver lining having cancer!

Lyn is right re the diets and approaches some take.
My centre told me to just eat as normally as possible and to include high fibre foods. They did not want constipated patients !
However have a chat today with the team re diet.

Cranberry juice should be of the highest concentration of actual cranberries. Ocean Spray seemed to have about 24 % from my memory which was the highest I could find.
Towards the end I really did not need to use the enemas - things naturally happened.

Regarding eating after treatment , yes, I was able to return to a normal diet quite quickly . As you've possibly heard from many
"Listen to your body" - you'll be tired with fatigue ( about 6 weeks as it tapers off) and you will want to build up energy. You'll know what you want to eat again. Spicy foods and caffeine are not recommended initially. Again check.

I guess that you are on HT. If so ,alcohol can interfere with the calcium in your urine. As you are not producing testerone then your are at a higher risk of osteoporosis. ( again check medically re this). I'm slender and at a higher risk anyway. So I've decided not to drink until at least I finish HT.

Keep exercising. It's good for you both physically and mentally. A walk a day - subject to how far you feel safe to venture - is a good idea. I had 'dead leg aches' from HT/RT. Walking helped.

John

User

Posted 03 Feb 2016 at 09:00

Also half way through my RT, 10th session today of 20. At our clinic (5 minutes walk away...) they have been doing a pre-scan every day so can see if there are any problems in the bowels and bladder area. I have had to go on the table twice several times because I had gas in my bowels and had to have a walk around to relieve it. Found the easiest way is to sit on the loo at the time I get changed and relieve the gas then. Yesterday that did the trick, bowels were fine but my bladder was only half full so I had to drink another two glasses of water to sort that out, by which time a little more gas had come...

I thought I was heading for bowel issues last week with some 'wet f***s' and very loose movements. The specialist nurse told me to stop the laxitives (senna or cosmocol) which I did, but suggested I stayed on a high fibre diet. Good movements for a few days but still gas. At the weekend I tried going on low fibre, admittedly half heartedly by just giving up my bran flakes and brown bread - it seems to have gone the other way, verging on constipation. I will see what she says tomorrow at our weekly session.

The other problem I have had this week is having to go to the loo every hour or so to empty my bladder - I seem to be passing loads of urine starting a couple of hours after the treatment and going on till the early hours by which time it seems to be back to normal levels. No problems with the flow, that seems excellent, just the quantity. I am advised to drink the usual 2 litres of water as by the time I go for the treatment I am dehydrated so their glasses of water don't go in the bladder. Seems strange to be told to drink lots when you are passing oodles of the stuff, but guess it is a side effect of the treatment. One of the other chaps I meet down there says he has the same problem.

User

Posted 03 Feb 2016 at 10:10

Yes, I also have a scan each day and so far there have been no problems though I know others have had to come out and try again due to gas.

I am trying a low fibre diet but, like you, have concerns over becoming constipated as I often used to before RT. I stopped the laxatives a couple of weeks ago.

It seems it is pretty much a guessing game trying to get things just right. By the time I master it it will all be over :)

I'm off for a walk now before getting ready to make the drive to hospital.

Pat

User

Posted 03 Feb 2016 at 12:12

Pat / Dave

I too had many bladder/ bowel scans. It became quite routine towards the end of the 37 fractions.
I had problems re dehydration and some of me sessions were delayed as I had to leave the table , change and go and to reception and drink another 450ml of water.

And the gas was annoying too. Towards the end I almost felt housebound. But I still went for a walk each day, ( shorter by the end) just to clear my head.

Don't forget the radiographers have seen it all before!

John

User

Posted 03 Feb 2016 at 18:03

Thanks for the info.

I spoke to the staff today and they advised not to change my diet too much at present. Apparently my bowels have been fine on each scan so far. They suggested to leave out my morning bran and avoid brassicas etc but otherwise to eat quite normally.

Fingers crossed I can keep things stable without too much pain and discomfort.

Thanks folks.

Pat

User

Posted 05 Feb 2016 at 09:03

Well for the last couple of days at the sessions they found my bowels and bladder were perfect, hope it lasts. I have taken to drinking a couple of beakers of squash during the morning to sort out the dehydration. The specialist nurse advised me to go back to my normal diet provided I didn't eat too much broccoli and cabbage (which I don't anyway). There seems a fine line between being constipated and diarrhoea and they would far prefer the latter to constipation. This morning after a couple of days of constipation I have gone towards the other end having had my wholemeal sandwiches last night...

User

Posted 10 Feb 2016 at 18:56

Well, it's a week or two later and things are settling a little. Still some swinging from diarrhoea to constipation but trying to get a handle on that now. I still have the feeling of wanting to open my bowels when there is little or nothing there. This is around for most of the day and becomes annoying and uncomfortable at times. Has anyone come across a solution to this feeling?

Cheers

User

Posted 10 Feb 2016 at 19:37

Yes, I remember all of that. I had some of those problems too but it settled in time.

And no ,I wasn't able to do much about it. I just tried to 'live carefully' - not stray too far away from toilets for example.

However it didn't cause too much of a problem for me and I was able to continue working for 7 weeks. And my colleagues were understanding.

Hopefully it'll settle for you soon.

User

Posted 11 Feb 2016 at 13:59

Useful information, thanks to all. I'm starting RT soon, 37 factions at Canterbury. I wonder what % get these side effects with bladder and bowels? Not fun 😩

Steve

User

Posted 11 Feb 2016 at 15:09

I've just had fraction 24 today and have had some bowel problems since around fraction 8, but very little problem with the bladder, so far. I'm sure others will let you know their experiences but it seems that most of us get some issues but they don't have to be too horrendous. Follow any advice given to you by your treatment team and be prepared to make some changes to your routine etc during treatment. There are various medications available from the team that may help with some of the issues.

Good luck with your treatment.

User

Posted 11 Feb 2016 at 16:51

XK8, John didn't have any bowel or bladder problems during RT at all :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Feb 2016 at 17:00

XK8

I too didn't have any bowel or bladder problems during RT

Arthur

User

Posted 11 Feb 2016 at 21:08

My OH back to onco for first visit since starting prostap in November,psa down from 13.5 to 0.86,very pleased. Oncologist suggested 20 sessions of radiotherapy instead of 37,said it was proven to be as effective,anyone else had experience of 20?

User

Posted 11 Feb 2016 at 21:52

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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