Rectal Cancer

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Hello, this is my first time of posting.

I was diagnosed with rectal cancer 22 January 2022 followed by long term chemoradiotherapy starting in March 2022.  I underwent surgery (anterior resection) in September 2022 and now have stoma. 

I have been offered the chance to have a stoma reversal and need to make a decision around  September this year however, I have been told that there is a risk of being left with incontinence the thought of which has left me unsure as to whether I should go ahead with it.  I did experience some degree of incontinence prior to starting treatment,  in eighteen months I have had no problems with my stoma.

I would appreciate some feedback from those ostomates who have gone through a reversal.

Thank you.

  

  • Hi Michael C24

    This is a dilemma and one that I was very concerned with and found lots of support in the Stoma support group in the link below 

     Living well with a stoma reversal or LARS 

    I wasn’t pressured by my team as they were overwhelmed with patients before me  But after lots more f research and reassurance free my medics that I would have support if I was struggling I decided to go for it  

    Hope this helps 

    Ann
     ‍Art

  • Sorry about typos. The edit tab disappeared before I had chance to sort out my errors 

    Ann
     ‍Art

  • Hi  Yes it’s a tricky decision as the results cannot be guaranteed beforehand. As Ann says there’s lots of info on that other board. I had a very active stoma so was glad to get it reversed but the early days were quite tough. You will probably have to get used to a new ‘normal’ and even now, 7 years down the line I can have good and not so good days. Having said that I eat and drink anything I want and accept that after a Chinese and a few beers then I will have a few rapid trips to the toilet. 

    Have you heard of LARS - Low Anterior Resection Syndrome? There is a calculator online that looks at your chances of having bowel issues post reversal by answering about 6 questions - no personal info required - things like did you have radiotherapy, did you have chemo etc. Could be worth looking at and asking your surgeons opinion?

    Its hard to advise yes or no - I don’t regret my reversal but there are some days where I’m on my xth visit to the toilet that I’m glad I don’t have to go to work

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hi Ann, 

    Thank you for your responses to my post.  I am at the start of my research into the issue of having a stoma reversal. Since having surgery I have had no contact with any doctors and one six month review with my colorectal nurse who has been brilliant and who I can contact if I need to.  Apparently ongoing appointments with doctors causes some patients to becoming anxious so the Trust that I come under takes a hands of approach.  I am 74 later this year and am wondering if I need to go through another surgery the last one having taken nine hours.  Because of an issue with a pelvic side wall node as well as the rectum, I was also sent out of county for the procedure which complicated things.

    As you say it is a dilemma and one that I never envisaged that I would need to make.

    Thanks again

    Best regards 

    Michael

     

  • Hi Karen, 

    Thank you for your feedback.  I was grateful to hear of your experience which sounds as though it has been a bit mixed at times.  I have had few issues with my stoma which may needing emptying two or three times in the night however, once I get up in the morning it does not normally become active until after lunch.  After eighteen months I have got used to it and aim to do most things in the morning which suits me.

    I like using questionnaires so I will definitely  look out for the LARS Calculator. I had heard about LARS but it has usually been negative still we are all individuals

    Thanks once again

    Regards

    Michael.