Sigmoid colon - reversal?

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I'm an active mum who loves to hike and be outdoors. I've had an ilestomy since november 2021 due to a tumour in my sigmoid colon, this was removed and I have chemotherapy. 

I've been told I'm ready for a reversal and the hospital has tried to book me in on several occasions to have the surgery, but I've said not until I've spoken with the consultant. I want to know what life is going to be like post op. 

Have you had a reversal, did you make the right choice?

How has life been since?

My whole life I've struggled with an urgent need for the toilet, how I've not had speeding tickets is beyond me...I would dread eating out as this would normally result in a mad dash home, or worse an al fresco poo!

Since having my stoma I've been able to complete many hikes, eat out and generally have no worry about finding a toilet. Waking up each day with my stoma isn't great and I'd love to part with it is I can but am i stupid to consider having a reversal?

It would be good to hear from people who have had their sigmoid removed (referred to as 'the car park')

  • I have had the reversal operation, I had

  • I had a reversal about 8 months ago, my ileostomy had been a disaster, for a few months.Previously, after the tumour removal, I had a stoma on the left , which gave me no problem. The ileostomy, later on, was a nightmare with frequent leaking, despite the extra glue & tape... Therefore I saw the reversal as a saviour. I would not go back despite a lot of issues I had not been warned about.

    As you are happy with your ileostomy, I'd be you, I would no go for the reversal. 80% of reversals result in LARS= Lower Anterior Ressection Syndrome. Which is a condition where you do need the loo, often unexpectedly. Exactly what you were going through before your operation. Keeping a diary of anything you eat or drink, being careful with fibres... I am only starting eating certain leafy vegetables, as a trial( & frequent errors!), and make sure I take loperamide as a prevention..

    Have a look on Facebook at the stoma reversal groups or LARS groups.

    As you can still go hiking with your stoma, don't have the reversal. In order to have a social life nowadays, I have to  plan carefully what to eat a couple of days before & take religiously loperamide.

    Whatever you decide  good luck. Love, Brit

  • Sorry my long message disappeared into the ethereal world....

    I was not warned about the consequences of a reversal: Lower Anterior Ressection  Syndrome, LARS, which are the exact symptoms you describe before you had your ileostomy..

    I had the reversal over 8 months ago; am still struggling with the "right" no fibres diet. I would not go back to an ileostomy as I had a lot of issues with it. But as you are happy with yours & you can safely go hiking, don't change anything.

    I cannot have a  social life anymore without planning my diet for 2 days beforehand & not forgetting taking loperamide...checking the closest loo & carrying a change of underwear, just in case...

    Whatever you decide, good luck ,

    Love, 

    Brit

  • thank you for taking the time to reply. Being spontaneous is something I want to be more of, not the other way around. I've got this feeling the consultant when I talk about this won't be able to give me the statistics of people like yourself. 

  • Hi myheartbelongsinwales

    I would encourage you to look at living well with a reversal. You will get some more honest feedback on your questions. 

    My reversal was in December 2020 and there were times when I’d questioned what I’d done. It took many months before I could leave the house but I’ve been improving ever since. 

    If your current lifestyle works, and you don’t want the risk of a year or so of challenges, then perhaps now isn’t the time for the reversal. There are plenty of people who will always need a stoma and lead full lives. 

    Looking back, I’m pleased to be stoma-free. But I was able to work around being home bound. It helped that lockdown applied so widely and so I didn’t feel quite so isolated!!

    My surgeon didn’t have a single patient asking for the reversal to be reversed, if that helps. Take your time. Don’t be rushed into a decision.

    Every blessing
    Wellspring
  • Hi

    I was in a similar position to you 2 years ago following a low anterior resection with ileostomy. When I was offered a reversal the surgeon offered very little information about afterwards other than "you'll start off needing the loo around 20 times a day and, if you're lucky, it will reduce to around 6 times a day". I wasn't asked about lifestyle ( like you, I walk a lot) or, if I wasn't "lucky" at what level would I find life less fulfilling. My stoma worked well and didn't stop me from doing all the things I'd done previously, nor was my diet reduced or altered.

    I was seeing my GP on a different matter so asked her for her thoughts. Her advice was to think carefully about the sort of outcome I'd like,  could I adapt if it wasn't what I expected and, importantly, to realise that just because the operation could be done didn't mean that it should be done. A further long chat with my hugely experienced colorectal nurse said much the same thing. So, I would offer the same advice to you. Think about the outcome you hope for bearing in mind your lifestyle and any pitfalls that you would like to avoid, are there any red lines that you wouldn't want to cross, likely solutions if needed and pester your team for as much info as possible. 

    In the end I decided against the reversal and I don't regret it. We're all different though (thank goodness) so what was right for me almost certainly isn't right for the next person. It's a very individual decision. 

    1. Good luck and I wish you all the best.
  • My consultant did not even mention LARS, I only found out after the operation when a nurse explained it to me as I had the symptoms.

    it is not  well known. I joined the LARS research, when they contacted me, their consultant researcher is the one who gave me the statistics. Do a lot of digging before deciding, but honestly, it is a risk I would not take if I were you. Your ileostomy is not giving you any trouble. Difficult decision.

  • Hello 

    I was in your shoes and felt exactly the same as you.

    I came on here , I researched the worst outcome then finally I asked my consultant if I was in a terrible state could they form another stoma. He said that he would 
    I had it in writing , I know this sounds odd but I was so confused 

    If I did not go for it , would I regret it ?

    If I did go for it , would I regret it ?

    Once I found I would have support afterwards and I could have another stoma also apparently I was a good candidate for a reversal 

    I went for it 

    I don’t regret it, but I’m not one for regrets as I think it’s pointless. Would I do the same thing again knowing what I do and experiencing gaining Bowel control. Yes I would. But that is because I researched the good and the bad and felt supported by my team 

    Good luck with your decision 

    If you want to ask me anything about post reversal ask away 

    Take care 

    Ann
     ‍Art