Panproctocolectomy

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Hi everyone, I hope you’re all doing okay. I posted a couple of weeks ago, saying high-grade dysplasia had been found in my bowel and that surgery might be necessary. I was subsequently told that actually cancer cells had been found.  Two days ago I had an appointment with a colorectal surgeon, who offered either a partial removal of my large bowel, cutting out the dodgy bits, or removal of my entire large bowel, ie a panproctocolectomy. I also have Lynch Syndrome (a genetic condition increasing colorectal cancer risk). Due to this, cancer could later develop in the remainder of my bowel, if only partially removed, and I might have to have the rest of it out at some point.  So I chose the panproctocolectomy, despite it being a much more drastic op and leading to me needing a colostomy pouch afterwards. Can anyone offer any advice about similar experiences or surgery choices? Thank you in advance.

  • Hi  You’ve made a big brave decision but I think it will be worth it for your own peace of mind and not worry about having to go through another op a few years down the line. 
    If you click on  name then you’ll see on her profile page that she had the same operation and hopefully she’ll pop in shortly

    Theres lots of colostomy support on the board below

     Ileostomy, colostomy and stoma support 

    Take care

    Karen x

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Thanks Karen.yes I had a panproctocolectomy with a permanent ileostomy in 2019.

    Mat C if you have any questions please ask.

    It is a big op which I had by single port laparoscopy .do read my bio if you want to see how I recovered.

    Kath

  • Thank you Karen and thank you Kath. I had a read of your bio and it was good to hear about your experience. I know it won't all be a bundle of laughs, but I'm readying myself and am keen to get started. I had neurosurgery last year to help with my epilepsy, and I'm not fearful of the surgery, although the recovery period will be trying. My girlfriend is finding it much more difficult, but is very supportive. While I have made the decision for a panproctocolectomy, others think i should just have a colectomy for now, but I want to reduce future risk as much as possible, rather than relying on crossed fingers in the years to come!

  • Those were my feelings too.with a long history of colitis I felt it was the best decision.A very easy one to make.In fact the surgeon was surprised at how quickly I made the decision and I never had second thoughts and I have never regretted it.

    All the best with your decision and do let us know how it goes

    Kath

  • Hi  

    I did answer your question in the stoma group, as even though I had a different cancer and decision to make, like Kath, my decision was immediate so I can understand some of how you feel.

    Sarah xx


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