Pouch Looks "Perfect"

That is great! 

That's great news! It's always a relief to know the scope looks good.

Congratulations.... at least that's another worry; not to worry about anymore.

I was discharged from the care of the Hospital that created my pouch and also my local Hospital not long after, which I've been under since my UC diagnosis and for the first time in many years, there's no future appointments I need to attend.

Both hospitals have never said I need regular scopes; is this something that's necessary ?

The remaining rectal cuff still has a (smallish) risk of developing colon cancer. Some periodic looking around probably is worth it. Folks who've had cancer tend toward more frequent pouchoscopy, others tend toward every year or two. I'm a bit lazy about it and probably average every four years or so.

Scott F posted:

The remaining rectal cuff still has a (smallish) risk of developing colon cancer. Some periodic looking around probably is worth it. Folks who've had cancer tend toward more frequent pouchoscopy, others tend toward every year or two. I'm a bit lazy about it and probably average every four years or so.

Thanks Scott.

I was initially treated for UC, then it was decided I had indeterminate UC, which lead to the J pouch.

Would I still require routine scopes or just request a scope when an issue arises ?

Is this something I would request via my GP ?

I think you ought to get it looked at periodically. You really do have some risk at the rectal cuff, and surveillance is the best way to manage that risk. I have no idea how you get competent screening pouchoscopy under the NHS.

Yeah, I was surprised! I mean, I still have issues with irritation and hemorrhoids from time to time, but the fact that the pouch itself looks healthy is a big relief.

As for when you need scopes, you will find varying opinions on this.  Some physicians prefer not to scope if there are no problems, because the procedure itself is invasive. Some of it does depend on your pre-surgery diagnosis as well - for instance, if you had cancer or dysplasia, then it's probably recommended you get a scope more often, as there is still a chance of cancer recurring, or developing cancer in the retained cuff. Generally though, most surgeons or GIs will want to scope at some point.   My surgeon right now feels I will need a scope every 2 years, though because my pouch looked good perhaps he might push me to every 3 unless I'm having issues.  We'll see what he suggests on my next follow up.

my surgeon said my pouch was perfect looking too, last scope was 4ish months ago, yet i have all these issues of not being able to empty throughout the day, it all comes barreling out in the afternoon. some days everything gets backed up and it takes a couple days to sort out. yet i have a perfect looking pouch. just because it looks good does not make me feel better. i have a new GI doc now as my normal doc moved away so i really really hope a new set of eyes will uncover something, anything.

DGtracy - I completely understand. A few years ago I had problems with bleeding, but every time I was scoped, the pouch looked "fine." We don't always get the answers we want or need.

As I said in my first post, I still have issues as well, most recently with obstructions. I also have ongoing problems with irritation and hemorrhoids, which are mostly nuisance level, but can be quite painful at times. So just because the pouch looks good, does not mean that you cannot have symptoms. My understanding too is that a pouch can appear healthy, but that there can still be mechanical/motility problems. You can have stricture which causes difficulty in emptying even if the pouch is otherwise healthy.

In my case, I am simply happy that I don't have pouchitis as a contributing factor at this time.

At the end of the day, as my surgeon told me years ago, pouchers are still akin to walking experiments. The treatment, maintenance, understanding and expectations are constantly evolving and will undoubtedly continue to for years to come. 

Thanks again Scott.

 Thanks Spooky for your thorough reply; sorry I kinda hijacked your thread.