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

[Bethan49]

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

[Newdawn Administrator]

I have so much to look forward to! 😏

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

Newdawn

[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]

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 in reply to Colnegirl]

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 in reply to BellaBee10]

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 in reply to Colnegirl]

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 Administrator]

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 in reply to Newdawn]

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

[Justasheet1]

Bethan,

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

Jeff

[Jacksc06]

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

[Cllcanada Top 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 in reply to Cllcanada]

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]

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]

this is depressing, what I have to look forward to

[Bethan49 in reply to Eric_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 in reply to Bethan49]

Deffo not wimps Bethan.

[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]

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

[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 in reply to Shooey]

Hehe. Love your post.

[Shooey in reply to ladyprescott]

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 in reply to Shooey]

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

[Bethan49]

Sense of humour is a must!!!!!

[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]

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.