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Reply to "Diagnosed with Colon Cancer after 12 years of UC. Need immediate surgery"

Mike,

You ask a very good, but very difficult question to answer.  A lot of us wish we had crystal balls so we could answer the question.  I can't answer your question, but I can share my experience.  I have had a J Pouch almost 30 years.  I have battled pouchitis with antibiotics and then biologics for around 27 of those 30 years.  Yes, it has been endless meds and treatments and chronic inflammation, and in the last 10 years a Crohn's diagnosis and now, in 2021, a stricture which I am having dilated.  Despite all of that, my quality of life has been very good.  I have worked 30 years full time as a trial attorney and still doing it at age 58.  Could I have had all of that, sans the meds, the inflammation and the Pouchitis, by choosing an end ileostomy?  Yes.  But I do not regret my choice.  I think that for me, the end ileo and having a bag would have been tougher than for most people.  But that is just me.  I could probably go to an end ileo at any point in time, but I am choosing to fight to keep my J Pouch.  I will probably keep doing so until my J Pouch inlet perforates, or I start getting blockages, and there is no other choice or alternative.

But that is me, and you are you.  And your course could be like mine, or it could be worse.  It also could be a lot better.  You just do not know.  This is a support board for problem pouches, so the people who post here are, for the most part, the poorer results.  The people with good results, of which I am sure there are many, are not here, as they do not need support or help with pouch issues.

If you choose a J Pouch, it's 100% you will be told to scope it every year, because of the cancer diagnosis.  They will be watching the rectal cuff, which is the only colonic tissue left in after the surgery, in particular. It will be biopsied every year. That is one thing you have to consider that I didn't, because I did not have cancer, just dyplasia.  But even with the dysplasia diagnosis, annual scoping is indicated.

So good luck with the surgery, pick a very experienced surgeon (this is crucially important if you do a J Pouch), and I wish you the best in this decision.  Hopefully others can give solid input.

Last edited by CTBarrister
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