Reversal how long should I wait?

Hi Anne

I fully understand your dilemma.  I had my LAR in June 2021 and have been pencilled in for reversal since December 2021, with 2 pre-op assessments in that time. At one point I was told by the colorectal team that they thought it would be at least a 2 year wait but I wasn't too bothered to be honest as I was so uncertain about what to do for the best.

Today though, I reached a decision (hurray!).  My colorectal nurse phoned with the results of my recent CT scan and CEA, which, amazingly, were clear (what a relief).  She also asked if I'd reached a decision yet on the reversal as they are farming patients out to different hospitals and the backlog that was there a few months ago has now been cleared.  I told her that deep down in my heart I really didn't want to go ahead.  We had a chat about my particular situation and lifestyle, how I was managing with the stoma and what I'd be prepared to tolerate if things didn't turn out as well as I'd hoped. My tumour was very low down so I wasn't expecting things to be plain sailing - and she agreed. She also said that once you get past 12 months then the reversal can be less successful. So, the upshot is that I've decided against reversal and I know that's the right decision for me. The colorectal nurse also thought I'd made the right call and said that many don't opt for reversal.

In truth, I feel very, very lucky.  My tumour was caught before it got out of hand, the stoma has worked well, I've become confident with it, am feeling really well and am happy in my own skin.  Today, for the first time in ages, I feel like a huge weight has been lifted as I was getting so anxious about making the right decision and also about the 12 month check-ups.

I've probably not really answered your question but I really hope that you can get some clear indication of a timescale at least for your op so that you can make plans to get on with life.

Good luck x

Hi BlueBlue.

My situation is different to yours. I have a colostomy, which I knew was going to be permanent before my surgery. I have adapted really well to my new normal and I can honestly say that if my surgeon told me tomorrow that by some miracle, I could have a reversal, I would say "nah.Your alright. I'll keep it thanks." It saved my life and will be 3 years old this coming Sunday. 

Take care

Kim

Hi BlueBlue 

Congratulations on getting the all clear with your results  What a relief for you  I am very anxious about my upcoming CT and bloods it’s very worrying  

Thank you so much for taking the time to write your experiences with your op and processing the best outcome for you 

I feel the same as you in that I really am uncertain about having a reversal which would mean my spending most of my life on or near the toilet. 
My tumour was low down too and I’ve been adviced that I’m a candidate for LARS!

I really appreciate your open honest answer.

Thank you again 

Hi Ann

Yes, very anxious waiting for the test results!

I think what really cinched the reversal question for me is that I'm a carer for two badly disabled siblings.  They both have continence issues so I've seen first hand the issues/problems.  It definitely wouldn't do for all three of us to be desperate for the loo at the same time   OK, that was flippant, but the problem is very real so I didn't feel that I could risk it.  And, as I said, I really do feel very lucky at how things have turned out.

Fingers crossed you hear about your reversal soon and you can make the decision that's best for you. x

Heh blackstuff  .your colostomy and my iliostomy are almost twins.mine "fred"will be 3 on tuesday.what a time we had in july 2019.!!

Like you mine is permanent and I accepted that even before the operation.Im quite glad in a way that I dont have to make a decision on reversal.

Thinking of you Artsie and all the best with whatever you decide as the best choice for you personally.

Kath

Hey BlueBlue 

You’re  a realist like me and it’s definitely would be really hard managing three rushing to the toilet. 
We’ve had three years of this damn Covid restrictions and I’ve tasted freedom this year. I just don’t want to be worried about where the toilets are when I’m out. 
At the moment the team haven’t got back to me if they drag their heals I will air towards booking that holiday and forget about the hospital for a while. If my results are clear ! 
Take care 

Hi Katz

Thank you.

It’s a tricky one as they’re not saying if it’s possible for me to be reversed yet so maybe that’s why I have this nagging doubt. 
My stoma is fine and doesn’t stop me doing anything. 
So it may be a keeper. We will see 

Hi Artsie Ann,

It would be interesting to know what the medical reason is for saying after 12 months might be more of a problem. You might have to work harder at getting the muscles back in shape but what else? I believe that the gut bacteria will have gone but it repopulates itself and I helped it with probiotics.

I know that not everyone is the same but I had a LAR with ileostomy and didn't get a reversal for exactly a year. The first couple of weeks were difficult but gradually things improved. and after six months perhaps I had started to establish a new normal, morning and evening, hardly ever during the day. Sometimes I eat something that upsets the norm and it takes a couple of days to settle down but, while the stoma was easy enough to manage and live with, my new norm is preferable.

If you are being asked to choose it is a very difficult choice to make, I can only suggest you get as much medical advice as to why they say after 12 months isn't so successful and how they feel your own own reversal may go.

Best wishes and best of luck,  John 

Hi John

Thanks for taking the time to reply. I remember you were so helpful in my early days in managing my stoma. 
I haven’t had it explained to me why the twelve months limit is so important when they get back to me I will ask.

I think in my case it’s not so straight forward so I won’t know until I wake up if it’s possible. I’m tempted to go for it and let fate decide. But I will find out more about the twelve months time limit first. 
Thanks again it’s encouraging to know that you managed your reversal well 

Hi all I have been in contact with my team as I’ve been experiencing problems ( bit personal so I will spare you all the details) I’m booked for pre op 9th August and a procedure day case the 22nd. So I will know if I am able to be reversed or book that holiday and stay as I am.
Got the collywobbles as I’m also having my CEA levels 1st and CT awaiting booking for my cancer check so August will be an informative month

Take care all