Hello Mr. V.

happy new year and congrats on your long term positive pouch outcome.

I pray I will have your success in the future!

I have been told by both my surgeon and GI that yearly scopes are in order. Since my high grade dysplasia was in the rectum and the impetus for my choosing this path, I am going to follow their instructions for the first few years and then see what happens. My 87 yo mother in law is 17 years post surgery and has also had a perfect outcome. She has tapered off the yearly scopes at this point.

from my perspective if you are low risk then you are low risk, but not no risk.

At a certain point I will reach a certain age and unless I have a need to, I won’t scope  anymore.

Once I reach  a certain age, what am I going to do with the information? I don’t believe I would survive another major surgery to remove pouch, anus etc,  if cancer/dysplasia ocuured in the cuff.

But for now I am not going to worry about these possibilities and focus on recovery.

congrats again and may your good pouch function  continue forever!

If you had dysplasia or cancer when you had your colectomy, or any chronic inflammation with your J pouch, you are normally deemed an annual scope candidate. If you do not fall into either one of those groups, it's discretionary, and can be every 1-5 years. If you never had a scope in 11 years, you probably should get one. The rectal cuff cancer risk is low, but not nonexistent. They will biopsy that area in any scope.

I think it’s quite common for folks with trouble-free J-pouches to defer pouchoscopies. Many don’t even have a gastroenterologist, since there’s not much reason to visit one. Cancers in the rectal cuff have been reported, but they really are quite uncommon. I also don’t get scoped very often, but my primary care doctor is also my gastroenterologist. As others have noted, I’d be less casual with a dysplasia history.

It’s probably worthwhile to have a relationship with a gastroenterologist who is knowledgeable about J-pouches. The wait times for a new patient appointment can be months long, which is miserable if you need care (or even just a Cipro prescription). OTOH, there is a lot to be said for just living a normal, healthy life, and dealing with issues only if they arise.

The nice thing about pouch scopes is they are much easier to prep for than colonoscopies.  A day (or even half day) of clear liquid diet beforehand and a couple of fleet enemas should do it.  You might bump into a MA that doesn’t know this and tells you to do the full flush, but if you talk to your GI about it they should be able to change those instructions to a basic clean/enema.

Personally I’d suggest get your scope fairly regularly.  You want to stay on top of any inflammation.  Sometimes you may not know it’s there until it causes a problem like a blockage, but best to know and address it early. It’s pretty easy for us to go from feeling fine to feeling awful in a very very short time.

I agree about the easy prep for a pouchoscopy. I wouldn’t use the Fleet enema solution, which is designed to be irritating (to induce evacuation of the rectum for those who have one), but the emptied Fleet bottle is a very convenient tool for rinsing out the pouch when it’s been refilled with warm tap water.

Thank you all for your input - this has been very helpful.  I'm thankful to have a community of brothers and sisters who are willing to pool their knowledge and share experiences!

I had annual scopes for few years, then my GI recommended less frequent intervals. I have never had any dysplasia or cancer found and my GI now says 5 years. I am over 26 years post colectomy and 51 years since my UC diagnosis.

So, it is definitely not obvious or required to have annual scopes. It is individual.

Jan