Post-TME for rectal cancer

Hi Simon_CH I’m afraid it’s very difficult to predict as even people with the same operation can have different experiences. I had a Low Anterior Resection with a temporary stoma that was reversed later. My friend had the same - she suffers from constipation whereas I suffer from the opposite.

It’s fair to say that your bowel will take a couple of weeks to settle down after the op and it’s recommended that you follow a low residue diet initially. My surgeon told me that my bowels would not go back to how they were but I would get used to a ‘new normal’. As part of your colon will have been removed then waste matter will move through more quickly and less liquid will be absorbed to stools will be looser. You may find that loperamide may be necessary to slow things down a bit.

The reversal of your stoma will then upset your bowels further and more unpredictable times will follow. Soft toilet paper and nappy cream for a sore bottom is a must and you may find that certain foods have an unwelcome effect. You are told to stay hydrated but too much liquid and you’ll have loose stools. 

Im sorry that it’s not better news and hopefully you’ll be someone who quickly regains control and goes back to normal but I just wanted to warn you that there can be tricky times ahead. I’ve attached a link to a stoma reversal board that we started inside the stoma board where you can have a look at others experiences

 Living well with a stoma reversal or LARS 

Hope the op goes well

Take care

Karen x

Hi Kareno62 

Many thanks for all of this info - much appreciated and definitely helpful to hear real patient testimony. What you say echoes what my surgeon told me - bowel function will be different but it’s hard to say in exactly what way. I might also be having some post-op chemo depending on what they find in the tissue they remove - which will add another level of complexity to the symptoms. 

My latest PET and MRI results have shown complete response - my surgeon, though, talked about a near-complete response and this was part of his justification for operating. My tumour was ~10cm inside, while ‘watch and wait’ programmes seem to be reserved more for patients who would be left with a permanent stomach via surgery.

I know that the risk of local recurrence is much higher without surgery (~30% at 2 years) and the stress of more regular checks (and worrying about recurrence) is also a factor - still, I feel like the decision isn’t clear-cut with there now being more frequent use of watch and wait vs maybe 10 years ago. 

I’m seeing my oncologist on Monday to discuss further and I still have time to change my mind about surgery - I just feel like i’ll end up regretting my choice whatever I decide. Not an easy choice!

Thanks again,

Simon

Hi Simon_CH 

It’s a tough decision and I think you are doing the right thing having further discussions with your consultant. If they suspect lymph node involvement or EMVI then surgery might be the best belt and braces option with mop up chemo.

Ive been on the board since 2016 and I’ve seen watch and waits go both ways - Jogey is a success story so I’ve attached a link to one of his posts below. On the down side we’ve lost members who’ve had a recurrence within a couple of years?

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/diagnosis/262980/rectal-cancer-watch-and-wait?pifragment-16476=1#pifragment-16476=1

Hope the appointment helps clarify things for you x

Thanks again Kareno62 

Good to hear the positive side of things but also understand it doesn’t always turn out that way. I’m seeing my oncologist this afternoon when I should have the latest MRI results. Let’s see how that goes….

I think I’ll go for the surgery in the end - gives the best chance of a good oncologic outcome and I have to hope the long-term bowel changes are manageable.

Thanks,

Simon