MUTYH (MYH)-associated polyposis (MAP)

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I have recently been diagnosed with MAP - please can anyone help at all with what is the best next steps for me I am still young and they have advised the next step is key hole surgery where they remove my entire large bowel. Is there no way around this at all ? Is there nowhere in the world that can offer any treatment to sort this condition ? I am very worried as the last colonoscopy I had showed forms of high grade dysplasia in one of the large polyps removed so situation is getting worse. NHS has advised that this is best served by a risk reduction colectomy and ileorectal anastomosis. Has anyone undergone this procedure ? What is quality of life after this sort of operation ? Are there any complications . Wish you all the best and any advise will be much appreciated 

  • Hi  

    Welcome to the forum . I can hear your concern in your post .

    A couple of thoughts .

    You might like to consider a second opinion. Your GP or consultant can advise on this .

    Our helpline staff would be happy to chat with you on 0808 808 0000

    but you also might like to consider contacting Bowel cancer U.K. . They have a nurse you can ask specific questions from and given it is quite a rare condition they could point you to the latest information.

    https://www.bowelcanceruk.org.uk/about-us/contact-us/
     
    Also if you want to find the latest publication on the research I find pubmed search engine good for the science articles . Not for everyone I know , but if you are careful with the dates and sample sizes it can be helpful  in some cases .

    Take care ,

    Court 

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