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What has been your experience with long term follow-up care? I had my pouch done nearly 20 years ago and don't have a reg. GI dr monitoring anything or doing check-ups every few years. I don't have any major issues with the pouch other than occasional bleeding, so no reason to go really.  Do your Dr's have a follow-up routine to check for anything proactively? I always worry a bit about cancer on the remaining cuff now that I am not a young lass anymore......

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Hi!

I am 11 years post surgery. My GI schedules me to see him once a year. He does a flexible sig every two years. I hate the appointments! I love the dr, I just hate going. He said that it is important because UC causes you to be high risk for colon cancer so the cuff needs looked at regularly. I am 53 now and have had no problems with my pouch over the years. I struggle these days with joint pain, which my GI said is the UC attacking  the soft tissue. 

You probably should find a GI, even just to form a relationship with in case you would need care in the future.

Best,

Dona

Dona

Ive got a new Jpouch, so cant really comment on long term care, but I will say my GI isn't too bothered about scoping me (when I had UC I was scoped every 12 months even though I had no symptoms).  I had figured they would be keen to see inside and how it was all healing, but apparently not.   When I asked when id get scoped he said 'next 5 years or so'.  He went on to say that risk of cancer has been removed so I basically now join the standard demographic for risk I guess.

 

Of course everyone is different, I had dysplasia in colon but fortunately nothing else, people who had more or if there was more widespread concern might get scoped more I guess.  im a thin guy though, so have very minimal cuff

Bobish

I have had a pouch for almost  years.I average 23-31 b/m's daily,going to a gastroenterologist is a non starter,no one has an answer to my problem,i had to recently cancel a surgery for severe aortic stenosis,reason the Cardiac Surgeon advised this was gold standard,hmm good bye doctor,he predicted i would be dead in 2 years,at least the b/m's willstop.

P

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