The unspeakable bowel issues after chemo..... ... - CLL Support

CLL Support

23,258 members39,957 posts

The unspeakable bowel issues after chemo..... Do you ever get back to normal? From Beth, Nic, Del, and sue... And Maria

Bethan49 profile image
25 Replies

So in our very random chats with a number of friends on HU, we got talking about the issue of our bowels which just haven't returned to normal after chemo.. Fcr to be specific. So..

1. Very loose.....

2. When you have to go, YOU HAVE TO GO!

3. YOU GO MORE... UP TO 5 TIMES A DAY!

4.COLOUR RANGE.. A BROAD SPECTRUM... AUTUMNAL COLOURS!

5. NO WEIGHT LOSS DESPITE MORE COMING OUT OF BODY THAN PUTTING IN!

Other issues to add not linked to bowels are :

Nails splitting.. Brittle and discoloured

Nic says that she aches all over too...

What a bunch we are... It's getting used to our new normal! Otherwise fandabydozy... Apart from shares in Andrex!! 66

Written by
Bethan49 profile image
Bethan49
To view profiles and participate in discussions please or .
Read more about...
25 Replies
Newdawn profile image
NewdawnAdministrator

I have so much to look forward to! 😏

I won’t say hang loose in the circumstances guys! ☺️

Newdawn

annmcgowan profile image
annmcgowan

Hi Bethan nice to hear from you.

Sorry about the bowels. That would be the old normal for me being a long term suffer of Irritable bowel syndrome (IBS). I know exactly how you feel your describe it well and colourfully.

I have started FLAIR on Ibrutinib and rituximab arm. So far so good.

I am so please to hear that other than the bowels which you will get used to or even recover from that all is going well.

Well done.

Good health and happiness to you.

Ann

Colnegirl profile image
Colnegirl

Mine are exactly the same and I am 5 years post FCR!! I recently contracted a stomach bug and that has really taken it's toll. It's taken over 2 weeks to clear and I only started eating normally again two days ago. The worst part is that I only lost a couple of pounds!!!

Colnegirl x

BellaBee10 profile image
BellaBee10 in reply toColnegirl

Sorry you've had trouble too! Although I joke about stuff like this, it's a different thing altogether talking about it seriously. I couldn't even take Matt to football this morning. I've had it on and off for weeks but it's bad now. I just googled my symptoms but Dr Del just told me to stop it. I wish I hadn't cancelled my GP appointment last Friday. I'll have to wait weeks for another. None of what's wrong is a big deal but added together I feel cr@p, literally!

Hope you feel loads better soon.

Xx

Colnegirl profile image
Colnegirl in reply toBellaBee10

No, it's good that you talk about it, as I had no idea this problem seems to possibly be linked to FCR treatment, just thought it was me.

I had to do a stool sample on Friday, so waiting to hear the outcome.

Can't you get an urgent appointment at your GP's or telephone consultation, which is what I had? You shouldn't be suffering like that.

You take care xx

BellaBee10 profile image
BellaBee10 in reply toColnegirl

And what gets me is this is the heaviest I've ever been in my life. If I was a 🐝 I'd doubt there would be any take off...I'd have to walk up to the flower and smack the stalk with my booty to get the pollen.

Newdawn profile image
NewdawnAdministrator

Fortunately we can joke amongst ourselves about this Nic and all but it’s not remotely funny when it starts limiting our activities. I had a long episode of this after having my gallbladder out so share your pain!

Best wishes,

Newdawn

BellaBee10 profile image
BellaBee10 in reply toNewdawn

It's one of those many many occasions I am so grateful for this group. X

Justasheet1 profile image
Justasheet1

Bethan,

It took me almost 2 years to get normal again in the little boys room. 😧

Jeff

Jacksc06 profile image
Jacksc06

Agreed. I didn't think it possible to produce so much, Both in volume & frequency !!.

Cllcanada profile image
CllcanadaTop Poster CURE Hero

Have you been tested for C.difficile... the autuminal colours are an indication... a swampy smell mixed with rotting fish...

There are two types acute and chronic... you might have the latter... not uncommon after treatment, and you need it dealt with.

You may not be loosing weight but your body chemistry will be seriously impacted, and you start to waste...

~chris

ladyprescott profile image
ladyprescott in reply toCllcanada

Does this happen with Ibrutinib too? I hear in the beginning of treatment this may be an issue, but don't know (on average) how long it lasts. Just about ready to start my meds. Carole

Ernest2 profile image
Ernest2

First I'd go for all the recommended tests to be sure.

I had problems before FCR and you are familiar with the rest. As result now I take Psyllium 3 times a day, otherwise I really wouldnt be very functional. I do have long term concerns.

Start with the medics.

Ernest

Eric_68 profile image
Eric_68

this is depressing, what I have to look forward to :(

Bethan49 profile image
Bethan49 in reply toEric_68

Don't be depressed... Treatment can give you a new lease of life... Actually.. Not can but WILL! We can cope with a bit of bowel stuff if we can cope with cll. Not everyone feels like us... We're probably wimps. Keep your chin up x

Wroxham profile image
Wroxham in reply toBethan49

Deffo not wimps Bethan.

Bramleys profile image
Bramleys

I'm not looking forward to that when my time comes. I already have food intolerances (maize is the biggest nasty) so fuel to the fire comes to mind.

I do hope you can find something that helps and makes you more comfortable.

Clare

Bethan49 profile image
Bethan49

Thanks everyone for all your comments and support.. One of the negatives fir hopefully a positive outcome!

Shooey profile image
Shooey

I thought it was just me, sorry to hear of others suffering. My bowels were sort of normal while having chemo but have taken on a life of their own since I finished the course and yes 4-5 times a day seems to now be the norm unfortunately. More embarrassing is the wind that seems to happen at the most inappropriate times, like on the treadmill at the gym! I expected some change as i’ve been eating lots more veg and fruit but not to this extent. No other symptoms to suggest an infection, hopefully all will revert to normal in time, in the meantime i’m going to audition for the wind section of the London Philharmonic, all good fun!

Shooey

ladyprescott profile image
ladyprescott in reply toShooey

Hehe. Love your post.

Shooey profile image
Shooey in reply toladyprescott

I’m sitting here tittering away to myself, I reckon if we were all in a room together we could strike up the National Anthem! Whoops, time to dash haha

Bethan49 profile image
Bethan49 in reply toShooey

Ha! I was thinking exactly the same!!!!!!!

Bethan49 profile image
Bethan49

Sense of humour is a must!!!!!

BellaBee10 profile image
BellaBee10

Saw the doc. Blood tests for diabetes, under active thyroid and vitamins or whatever. Plus I need to take in a sample of the unspeakable stuff. I had to present to the directors at work yesterday and so I wasn't the first person to 'literally' sh1t themselves as well as metaphorically, I took so many immoudium I'm unlikely to want to go again until 2019. If my sample is clear I'm heading for a camera job in an area that has so far avoided a medical visit. Back for results on the 10th. My GP was very nice. I wrote it all down because I waffle like hell normally.

lotn9 profile image
lotn9

this is a reply to all, very funny posts, although if we didn't laugh because of this bowely stuff, I reckon we would cry, this morning, just was talking on the phone, when I had to "run" unfortunately, didn't make it, everything had to go in the wash including me, then to add to my fun, both the washing machine and downstairs loo decided to pack up at the same time, do I cry, scream, or just carryon, my FCR finished over two years ago, couldn't take the R part of treatment, very bad reaction, so as they say "Keep Calm and Carry On". Wish you and me all well.

Not what you're looking for?

You may also like...

Road to a BMT... oops just got there (Day +101)

Yesterday was another huge milestone on our BMT road, Day 100 - when we stared back in Nov.2017...
NMMP profile image

iwCLL 2013: Dr. Sharman discusses why we feel so lousy, and much more.

Hi friends In Part 4 of my conversation with Dr. Sharman at iwCLL 2013, we start by discussing the...
bkoffman profile image
CLL CURE Hero

Isn't it time for some Good NEWS??

My husband started Ibrutinib in April after his BR chemo failed. He is 11q deleted. We were just at...
kathymac52 profile image

Good news.

Hi All. Ken and I had our joint 3 monthly appointments on Thursday and glad to report that we are...
june65 profile image

what provoked my CLL?

Educating myself about CLL, I read that prolonged stimulation of the immune system in combination...
Yalokin profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
CLLerinOz profile image
CLLerinOzAdministrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.