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EBRT is over - Someone please inform my bowels!!

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User
Posted 19 Feb 2024 at 14:29

Just putting this out there as I am feeling pretty sorry for myself πŸ˜‘, although I do appreciate that there are plenty people faring worse than me.

Having finally completed my 20th and final EBRT session (yippee! πŸ˜„).  I did hope that I could start to try and revert back to some semblance of normal life. However, the impact of the radiotherapy on my bowels is causing me havoc. Having my insides fried every day for the last 4 weeks has obviously upset the bowels! I have a constant urge to poo, although when I get to the loo very little comes out. It’s "diarrhea" but not really. I must have spent 20+ times per day on the loo since EBRT finished. I spend that much time in the loo, I’m thinking of getting a TV in there or at least some new pictures (perhaps some of my bike to remind me of carefree days out). Consequently, I have a very sore and throbbing backside, but for me the most frustrating thing is how debilitating this is on my life because it has basically made me housebound. I’m too worried about urgently needing the loo if I go out. I resorted to immodiums last night when the situation got really bad and they did do the trick, well they did ease my problems a little but not enough to give me any confidence to go out.    

In under 12 months, thanks to the debilitating impacts of ongoing HT, the 18 weeks of chemo, brachytherapy and 20 sessions of EBRT radiotherapy I have gone from being a relatively fit 61 year old going out on weekly mountain bike rides, and enjoying daily 2 hour dog walks, and being busy around the house and garden, to being someone who cannot even leave the house to do the simplest of dog walks let alone contemplate getting back on the bike or going out and enjoying a few beers 🍺. I am literally wasting away.

I wonder if anyone else on here has experienced similar post-radiotherapy problems and who can offer any glimpse of hope / light at the end of this particular tunnel?

User
Posted 19 Feb 2024 at 16:19

Originally Posted by: Online Community Member

I wonder if anyone else on here has experienced similar post-radiotherapy problems and who can offer any glimpse of hope / light at the end of this particular tunnel?

Sorry I can't help mate. I had surgery but still struggling with side effects.

I just wanted to say how sorry I am that you're finding things difficult at the mo. However, I'm delighted that you are still managing to retain your sense of humour.

I know it's not it might not feel like it, but I'm sure things will improve.

Best of luck pal

User
Posted 19 Feb 2024 at 16:56

Hi SpongeBob,

I feel for you, you’ve been through so much and TBH there is little support post treatment for us HT/RT guys.
I didn’t have nearly as bad side effects as you although for a short while after RT when my bowels wanted to open they did just that and I simply could not control them. I had a couple of accidents out walking which is quite distressing when it happens. Even now, 10 months after RT I still carry my emergency kit with me when I go out walking or on my bike…Just in case. However my initial lack of control passed quickly and I got my confidence back. initially I took to wearing pads when I went out just to give me the security…i just reversed the tenna incontinence pads and the did the trick. if you’re really bad you can also get pants.

I also used Imodium when I took a flight not long after my RT finished.
if you’ve not already got one get a PCUK or MacMillan Toilet card and take it with you. If you show it in a shop or wherever they should let you use their toilet as a priority.
what’s your diet like? High fibre? Maybe you could go on a lower fibre diet?
Have you got some cream for your sore bum. The Radiology Nurse game me some zero base cream which helped with me.
Have you spoken to your CNS..they will maybe have some advice.

Good luck and hopefully you wil” stopπŸ’© soon!

Derek

Edited by member 19 Feb 2024 at 16:57  | Reason: Not specified

User
Posted 19 Feb 2024 at 20:05
Bowels should return pretty much to normal in most cases in a few months after RT with decreasing 'wet farts' that some people experience. There can be mucus with stools sometimes for six months or so.

Gently wash your bottom using non scented soap. Lightly apply appropriate cream by dabbing rather than rubbing in. Unfortunately there doesn't appear to be an overnight fix.

Barry
User
Posted 19 Feb 2024 at 21:27
In my case my RT was salvage, but it was also 20 sessions (and HT but no chemo or brachy). Things were worse in the week or two just after finishing than they had been during treatment. But by a month later it was improving, and normal life began to resume... with some caution.

But we are all different.

User
Posted 20 Feb 2024 at 14:26

Radiation side effects tend to lag about 2 weeks behind doses, so side effects peak about 2 weeks after the radiotherapy. Assuming the brachy was HDR brachy (so radiation has all finished), things should start getting better after those 2 weeks, but the rate they get better varies enormously between people.

You may also be suffering from Tenesmus, which is a sense you need to do a #2, when there's actually nothing there. That's very common too because the nerves that sense what's there aren't working and need to recover. Forcing in that situation might increase chance of rectal bleeding in the radiation area. It's the same reason you can't tell if it's solid, liquid, or gas waiting to come out. This normally all recovers in time.

When doing a #2, take a book or phone to do social media with you, to take your mind off forcing a poo that maybe isn't even there, and just relax. (Don't spend ages on the loo - loo seats are not good for blood circulation in the legs.)

User
Posted 21 Feb 2024 at 14:26

Hi Gooose,

No, in my meetings there was never any suggestion of having a spacer fitted. It is something that I'd read about but I didn't actually discuss it with them, perhaps I was too blase about it all, perhaps I should have?

I had another good day yesterday and I'm hopeful that my bad experience of the weekend might just have been a temporary reaction. I'm still very cautious about going out and I made the mistake of having arranged for a couple of outings for this week which is the first week following RT (a car service and the opticians), with hindsight I wish I'd arranged them for a bit later following the end of the RT. Mind you they are both done now.

I'm sure that you will be fine during the RT. It was o.k. really, just the daily trudge that got me down a bit i.e. the long and unreliable journey in, the wife's driving, the parking up, the waiting around, the using the enema, and the drinking. My appointments were all at different times which made it difficult to get into a proper daily routine but the staff were really good and re-arranged my times to mornings. I had trouble with the "shiffs" twice during the 20 sessions, on the first occasion it was a Sunday night and I was on the bog all night, the appointment was at 7:30am which meant getting up and ready at about 5:00am, it was a very nervy journey in I can tell you. I had to take imodiums which they aren't too happy about because of the risk of getting bunged up which is no good for RT. It seemed a bit more than ironic that having "shiffed" my brains out all night I then had to go and squirt an enema up my backside πŸ˜„. Some people are worried about the drinking and the consequences i.e. the need to pee going home etc but I found this o.k. I told myself that a bottle of water isn't actually that much and I kept myself pre-occupied by reading a book whilst the wife was happy playing on her phone.

The RT itself is easy, of course you need to wear one of those riddiculous open back hospital gowns. You just need to hold your position for a couple of minutes and there is no feeling from the RT itself. For the first few sessions they took a scan first each time to check that the positioning was right, but once they are happy that this is consistently correct then they just do the RT straight off. The scan only takes a couple of minutes and is all done in the same session. The staff are really good, and it is important to tell them of any issues like having the "shiffs" or being bunged up etc.

As for the brachytherapy, mine was HDR and was done two weeks before the RT. I recovered quite well from the OP, and I quite enjoyed the good sleep that I had. I had a one night stay in the hospital and I found out then that there were some poor soles in there that were in a lot worse position than me. My main worry was having the cathetar although I was happy that this was inserted whilst I was knocked out. In the end the cathetar was no problem and painless, they whipped it out in no time with no embarrassment either. I don't remember having any issues post the brachytherapy.

You'll be fine Gooose, all the best with your treatment, it will soon be over.

Spongebob

User
Posted 19 Feb 2024 at 14:29

Just putting this out there as I am feeling pretty sorry for myself πŸ˜‘, although I do appreciate that there are plenty people faring worse than me.

Having finally completed my 20th and final EBRT session (yippee! πŸ˜„).  I did hope that I could start to try and revert back to some semblance of normal life. However, the impact of the radiotherapy on my bowels is causing me havoc. Having my insides fried every day for the last 4 weeks has obviously upset the bowels! I have a constant urge to poo, although when I get to the loo very little comes out. It’s "diarrhea" but not really. I must have spent 20+ times per day on the loo since EBRT finished. I spend that much time in the loo, I’m thinking of getting a TV in there or at least some new pictures (perhaps some of my bike to remind me of carefree days out). Consequently, I have a very sore and throbbing backside, but for me the most frustrating thing is how debilitating this is on my life because it has basically made me housebound. I’m too worried about urgently needing the loo if I go out. I resorted to immodiums last night when the situation got really bad and they did do the trick, well they did ease my problems a little but not enough to give me any confidence to go out.    

In under 12 months, thanks to the debilitating impacts of ongoing HT, the 18 weeks of chemo, brachytherapy and 20 sessions of EBRT radiotherapy I have gone from being a relatively fit 61 year old going out on weekly mountain bike rides, and enjoying daily 2 hour dog walks, and being busy around the house and garden, to being someone who cannot even leave the house to do the simplest of dog walks let alone contemplate getting back on the bike or going out and enjoying a few beers 🍺. I am literally wasting away.

I wonder if anyone else on here has experienced similar post-radiotherapy problems and who can offer any glimpse of hope / light at the end of this particular tunnel?

User
Posted 19 Feb 2024 at 16:01

I didn't have brachytherapy so hopefully others who had similar treatment to you will comment. 

I had 20 sessions of salvage radiotherapy in 2022, for me, the first two or three weeks following treatment were the worst and my bowels took a while to settle down. Having said that though, even now  I have to go twice in the morning before leaving the house. 

Good luck. 

Kev.

Edited by member 19 Feb 2024 at 16:09  | Reason: Not specified

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User
Posted 19 Feb 2024 at 16:01

I didn't have brachytherapy so hopefully others who had similar treatment to you will comment. 

I had 20 sessions of salvage radiotherapy in 2022, for me, the first two or three weeks following treatment were the worst and my bowels took a while to settle down. Having said that though, even now  I have to go twice in the morning before leaving the house. 

Good luck. 

Kev.

Edited by member 19 Feb 2024 at 16:09  | Reason: Not specified

User
Posted 19 Feb 2024 at 16:19

Originally Posted by: Online Community Member

I wonder if anyone else on here has experienced similar post-radiotherapy problems and who can offer any glimpse of hope / light at the end of this particular tunnel?

Sorry I can't help mate. I had surgery but still struggling with side effects.

I just wanted to say how sorry I am that you're finding things difficult at the mo. However, I'm delighted that you are still managing to retain your sense of humour.

I know it's not it might not feel like it, but I'm sure things will improve.

Best of luck pal

User
Posted 19 Feb 2024 at 16:56

Hi SpongeBob,

I feel for you, you’ve been through so much and TBH there is little support post treatment for us HT/RT guys.
I didn’t have nearly as bad side effects as you although for a short while after RT when my bowels wanted to open they did just that and I simply could not control them. I had a couple of accidents out walking which is quite distressing when it happens. Even now, 10 months after RT I still carry my emergency kit with me when I go out walking or on my bike…Just in case. However my initial lack of control passed quickly and I got my confidence back. initially I took to wearing pads when I went out just to give me the security…i just reversed the tenna incontinence pads and the did the trick. if you’re really bad you can also get pants.

I also used Imodium when I took a flight not long after my RT finished.
if you’ve not already got one get a PCUK or MacMillan Toilet card and take it with you. If you show it in a shop or wherever they should let you use their toilet as a priority.
what’s your diet like? High fibre? Maybe you could go on a lower fibre diet?
Have you got some cream for your sore bum. The Radiology Nurse game me some zero base cream which helped with me.
Have you spoken to your CNS..they will maybe have some advice.

Good luck and hopefully you wil” stopπŸ’© soon!

Derek

Edited by member 19 Feb 2024 at 16:57  | Reason: Not specified

User
Posted 19 Feb 2024 at 20:05
Bowels should return pretty much to normal in most cases in a few months after RT with decreasing 'wet farts' that some people experience. There can be mucus with stools sometimes for six months or so.

Gently wash your bottom using non scented soap. Lightly apply appropriate cream by dabbing rather than rubbing in. Unfortunately there doesn't appear to be an overnight fix.

Barry
User
Posted 19 Feb 2024 at 21:27
In my case my RT was salvage, but it was also 20 sessions (and HT but no chemo or brachy). Things were worse in the week or two just after finishing than they had been during treatment. But by a month later it was improving, and normal life began to resume... with some caution.

But we are all different.

User
Posted 20 Feb 2024 at 11:23

Thanks for your replies, chaps, I was having a definite ‘blip’ yesterday, a momentary feeling of being overwhelmed by the apparent hopelessness of it all. I had a better night last night, I think mainly thanks to the Imodium, I even had a normal fart although I’m nowhere near trusting them yet. So, having resumed a more positive attitude, I have decided to shelve a plan that I had been formulating in my mind to move all my stuff into the bathroom (well as much stuff as would fit) and then living in there, sitting on the bog for the next few weeks. Instead, I’m going to work on a strategy that will get me out and about again.

Your advice to take delicate care of the sore bum in the right way is something I’m on with. Best to avoid the ‘wire brush and dettol’ treatment and Izal toilet paper (eeek!). I did my share of nappy changing when the kids were babies and learnt then that Sudocrem is the stuff to do the magic.

I really like Decho’s  idea of having an emergency kit, I’m definitely going to put one of them together. The biggest impact for me is on long walks with the dog which is mainly countryside so it’s a case of working out where the best private spots are for emergencies. And if dumping in an emergency to do it with consideration and in an environmentally friendly fashion, as per the SAS. Many a time I envy dogs who don’t worry about squatting down anywhere they like.

I do think about diet, I have a mixed diet, probably more high fibre than not as I do have a lot of veg, bread and rice. Also, coming from Bradford, curry does feature prominently which I know is probably not ideal. Also, I’ve been off the beer since before RT, so that is something to factor in once I feel I can resume.

Anyway, lets crack on, thanks again for your best wishes, and good luck for each of you with your own journeys.

Spongebob.

User
Posted 20 Feb 2024 at 13:42

Originally Posted by: Online Community Member

I was having a definite ‘blip’ yesterday, a momentary feeling of being overwhelmed by the apparent hopelessness of it all.

I'm so glad you're feeling a bit brighter this morning. To me, your quoted sentence, beautifully sums up in a nutshell, how we all feel at times, whilst dealing with this disease. I wish you a full and speedy recovery.

Edited by member 21 Feb 2024 at 14:33  | Reason: Spelling.

User
Posted 20 Feb 2024 at 14:26

Radiation side effects tend to lag about 2 weeks behind doses, so side effects peak about 2 weeks after the radiotherapy. Assuming the brachy was HDR brachy (so radiation has all finished), things should start getting better after those 2 weeks, but the rate they get better varies enormously between people.

You may also be suffering from Tenesmus, which is a sense you need to do a #2, when there's actually nothing there. That's very common too because the nerves that sense what's there aren't working and need to recover. Forcing in that situation might increase chance of rectal bleeding in the radiation area. It's the same reason you can't tell if it's solid, liquid, or gas waiting to come out. This normally all recovers in time.

When doing a #2, take a book or phone to do social media with you, to take your mind off forcing a poo that maybe isn't even there, and just relax. (Don't spend ages on the loo - loo seats are not good for blood circulation in the legs.)

User
Posted 21 Feb 2024 at 06:03

Hi Spongbob

Sorry to read what you’re going through, but I’m sure things will improve in time. Everything crossed for you !

I’m lined up for RT in April, quickly followed by LDR Brachy, so I’m interested in your experiences of both. Can I ask, prior to EBRT, did you have spacer gel (SpaceOAR) inserted ? I’ve read your very detailed profile and couldn’t find any reference to it ?

User
Posted 21 Feb 2024 at 14:26

Hi Gooose,

No, in my meetings there was never any suggestion of having a spacer fitted. It is something that I'd read about but I didn't actually discuss it with them, perhaps I was too blase about it all, perhaps I should have?

I had another good day yesterday and I'm hopeful that my bad experience of the weekend might just have been a temporary reaction. I'm still very cautious about going out and I made the mistake of having arranged for a couple of outings for this week which is the first week following RT (a car service and the opticians), with hindsight I wish I'd arranged them for a bit later following the end of the RT. Mind you they are both done now.

I'm sure that you will be fine during the RT. It was o.k. really, just the daily trudge that got me down a bit i.e. the long and unreliable journey in, the wife's driving, the parking up, the waiting around, the using the enema, and the drinking. My appointments were all at different times which made it difficult to get into a proper daily routine but the staff were really good and re-arranged my times to mornings. I had trouble with the "shiffs" twice during the 20 sessions, on the first occasion it was a Sunday night and I was on the bog all night, the appointment was at 7:30am which meant getting up and ready at about 5:00am, it was a very nervy journey in I can tell you. I had to take imodiums which they aren't too happy about because of the risk of getting bunged up which is no good for RT. It seemed a bit more than ironic that having "shiffed" my brains out all night I then had to go and squirt an enema up my backside πŸ˜„. Some people are worried about the drinking and the consequences i.e. the need to pee going home etc but I found this o.k. I told myself that a bottle of water isn't actually that much and I kept myself pre-occupied by reading a book whilst the wife was happy playing on her phone.

The RT itself is easy, of course you need to wear one of those riddiculous open back hospital gowns. You just need to hold your position for a couple of minutes and there is no feeling from the RT itself. For the first few sessions they took a scan first each time to check that the positioning was right, but once they are happy that this is consistently correct then they just do the RT straight off. The scan only takes a couple of minutes and is all done in the same session. The staff are really good, and it is important to tell them of any issues like having the "shiffs" or being bunged up etc.

As for the brachytherapy, mine was HDR and was done two weeks before the RT. I recovered quite well from the OP, and I quite enjoyed the good sleep that I had. I had a one night stay in the hospital and I found out then that there were some poor soles in there that were in a lot worse position than me. My main worry was having the cathetar although I was happy that this was inserted whilst I was knocked out. In the end the cathetar was no problem and painless, they whipped it out in no time with no embarrassment either. I don't remember having any issues post the brachytherapy.

You'll be fine Gooose, all the best with your treatment, it will soon be over.

Spongebob

 
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