To reverse or not to reverse

Hello there

My name is Mandy, I’m 56 and I have had my ileostomy since November 2018 following surgery to remove a tumour. I have been very lucky as I needed no further treatment and despite it being stage 4, I have had clear scans since then. 

The first couple of months living with my stoma was tricky, but once I found the right bag for me, things settled down. I am a bit of a foodie so the hardest thing for me was the beige diet at the start, but I did a lot of reading and took the advice of a lady on another forum who advised introducing foods gradually and chewing for longer. It worked and I can now eat more or less anything - I still avoid nuts and seeds but anything problematic I fancy, I just chew well.

My surgeon advised not reversing for 5 years, I think mainly because he fully expected the cancer to return (my oncologist was pretty sure it would) but when I saw him in November, he said he would do a reversal if I wanted to.  I now need to consider my options - my stoma is well managed and has just become a part of who I am.  I have read of a few cases of reversals not going well so I am a bit wary, but hoping to get more info here to make an informed decision as to which way to go.

  • Hello FostermumMandy

    I have an Ileostomy too but I’ve not had the same journey as you. 
    Stage 4 is really frightening and now you’ve been offered  a reversal. It’s a lot to process and I think your in a good place to find lots of experiences from others that have had similar which will give you more information to make your decision 

    Mine was rectal and I’ve been told I’m a candidate for Lower Anterior Resection Syndrome. 
    If your operation was higher up maybe a reversal will not have too many issues  

    Would a reversal inhibit your treatment if you needed it? I’m not sure it would but I’m not a medic 

    I have asked to be on the list, it’s a very long wait I’ve been offered lots of support and a colostomy if I an unable to manage. 

    Good luck with you decision. If you click on any names their bios will come up. 

    Best Wishes

    Artsie Ann 

  • Hello 

    I had an ileostomy reversal in 2018 and it was successful. I had stage 3  rectum cancer and following chemo/radiotherapy I had a low anterior resection where all of my rectum was removed I have been very lucky and don’t experience incontinence issues.

    A reversal is a very personal choice and only you can decide I personally am very happy with my decision.

    Good luck Blush

    Live for today Heart
  • Hi Panda21

    Thanks for this info. I’m a candidate for LARS Could I ask please did you follow the exercises here for regaining bowel control before your reversal? 
    I am on a very long waiting list  so I am trying to follow the exercises to get as strong as possible  and wondered if there was anything more I should be doing?

    Best Wishes

    Artsie Ann 

  • Hi Artsie Ann

    I followed the exercises religiously and still do since I love the freedom of not having my stomach although it did save my life!

    When I had my reversal I wasn’t allowed out of hospital until I had opened my bowels… I found drinking hot water helped move this along since I don’t drink tea or coffee and walking the corridor of the ward to wake up my bowel.

    There are certain foods that I can’t tolerate even though I’ve been told I can eat anything following the reversal. For me it’s mushrooms, beans, peas, sweetcorn etc

    so keep up the exercises and good luck Fingers crossed any further questions let me know 

    Best wishes 

    Panda21

    Live for today Heart
  • Thanks Panda21

    Youve really given me some positivity. I’ve decided to be put on the list they’ve said that if it’s intolerable I can have a permanent colostomy. That was my request. 
    It’s given me the inspiration to keep trying those exercises. Though I do find the very hard. Think my bottoms asleep. 

    Best Wishes

    Artsie Ann 

  • Morning Artsie Ann

    I am pleased I have been of some help and it is a very personal decision if from a medical perspective it’s your choice.

    For me I accepted it would be a new chapter and I would never be the old me however feel far more free without my bag.

     I can confirm your bottom is definitely asleep Blush

    Good luck 

    Panda21

    Live for today Heart
  • Hello Redhead

    I want to cut my carbon footprint down however if I have no control I think my footprint will double. So that’s why I’ve ask for a reforming of a stoma. 
    The one food I have really missed is sweetcorn so I’m very disappointed that it can cause a problem. 
    Still upwards and onwards. 
    Im still trying to wake my bottom up.

    She’s totally refusing and I can’t seem to find her. EyesSmile

    Best Wishes

    Artsie Ann 

  • I am waiting for a reversal and very often I get depressed I don’t know how long the waiting time is.Have signed my admission form but no feed back I’m on remote.The other problem is I am living with a catheter so I haven’t had a holiday.Even before my stoma opp peas sweet corn beans etc have alway gone straight through me 

  • Hi FostermumMandy

    If you are managing well with the stoma and, on balance, are ok with your current normal, you might be right to be reluctant to take on a reversal. One way to assess the possible outcome would be to complete a LARS questionnaire. I found one on-line and this is a predictor of how easily you will adapt to reversal, and what the next new normal may be like. 

    There are quite a variety of ways and means to assist post reversal. I’ve found them helpful, although my post reversal diet is much as it was with a stoma!  I would have stuck with the bag had my stoma behaved better - it kept prolapsing. In the end, my reversal was something of an emergency. There were times of regret in the early months, but now, 18 months on, I’m glad to be free of the stoma, even though some days can be tough - recent record was 10 visits to the throne room in one day after 5 days absence…

    I’m stage 4 with recto-sigmoidal cancer so very little of the business end of the colon left. In my mid 60’s if that helps. 

    Every blessing
    Wellspring