Pouchscopy

Normal depends on 2 things: (1) whether there is any history of ongoing or chronic inflammation in the pouch; and (2) whether there was any pre-surgical history of dysplasia in the colon. If either 1 or 2 are present, it's annual. If neither 1 or 2 are present, it's at the discretion of the gastroenterologist. Typical discretion could be 1-5 years depending on symptoms and history.

I am both 1 and 2 and am on an annual cycle going on 32 years now. 52, if counting the annual scopes I had when I had a colon.

I confirmed with multiple doctors that if your j-pouch is perfectly healthy then the max time to wait is 3 years. I never had pouchitis or anything so I am a 3 year person.

I have talked to people on here that get scoped every 6 months because their having problems. And I met yearly people on here too.

It depends if your having issues or not but I always told that every 3 years is the max time to wait

Guys i never had one till date ( its been 8 yrs ) as never had any major issue

had on and off blockage and couple of occasions of pouchitis which got sorted in short time

this time I am having a ling drawn issue and surgeon has called me .since he is in a different city will plan later in the tear till such time managing with guidance from local Dr

Thank you all!

@HEMU posted:

Guys i never had one till date ( its been 8 yrs ) as never had any major issue

had on and off blockage and couple of occasions of pouchitis which got sorted in short time

this time I am having a ling drawn issue and surgeon has called me .since he is in a different city will plan later in the tear till such time managing with guidance from local Dr

That is not good, you should get checked at least every 3 years. You can have a problem and not feel it. There is a guy on here that a carcinoma in his pouch and had to get the pouch removed. You should get checked at least every 3 years.

@grateful posted:

Thank you all!

Anytime

I am also 1&2 as Ct Barrister above. Dysplasia noted in 2008. Chronic pouchitis over 15 yrs. to current. Oncologist and j-pouch surgeon recommended yearly scope. Was doing that until new GI doc a few years ago said every 3 yrs ok. I insisted on yearly so we stuck with that. Pouch always looks good but unfortunately still trying to figure out how to best treat the chronic state.

I get pouchoscopies infrequently as needed, and my doctors have confirmed that *for me* this is a reasonable course. I don’t disagree with CT Barrister’s take as general guidance. Be wary of treating advice that others have received as though it’s applicable to you, even if anyone here words it as advice to you. It’s a bit like sharing prescription medication.

Yes, you’ve stated the obvious in that it would be fool-hearty for anyone to assume what’s good for one is good for another. These FORUMS should be recognized as just that. A place to gain perspective on options and treatments that we might otherwise not have known about.

On that note, Scott, I see you are treating with Flagyl & Cipro. I used to take both on a rotating schedule i.e. 30 days flagyl, 30 days cipro. Results were so-so. Stopped the cipro over concerns about possible long term side effects but flagyl alone has proved to be less effective. My (less than stellar) doc has not mentioned the concept of taking these together but the chronic inflamation is wearing me down and I’m pretty much willing to try anything at this point. So, is it my understanding that you are taking these together. I will certainly understand if you are not willing to answer this question in this forum. Either way, I will discuss it with my doc. Thanks

Hi grateful!

Though I have the 2nd criteria for a yearly scope (as mentioned by CTBarrister above), I was pleased to hear that my doc said to schedule the next one in 2 years. I'm all for the minimalist approach.  I waited 20 years to get the first pouchoscopy and I'm very proud of myself for finally being brave enough to let anyone near my reconstructed business. I wish I had been brave enough earlier because it was very informative. I also wish I had found this j-pouch online group earlier. Information is power!

HEMU, the scope is not as invasive as a colonoscopy and they only put you under for a little while, and you can opt to stay awake for it if you want. I had some active hemorrhoids going into it and my ass was super sore after the scope.  I'm have recovered now.  (This was a recent event.) If you decide to schedule one for the first time, make sure you're going to get a pouchoscopy, NOT a colonoscopy.  Different tools are used.  And I would make sure to go to someone who has done this before.  I assume any colorectal surgeon would have done the surgery and this particular type of scope, but not a GI doc.  Some of the GI docs don't even really know about j-pouches.

My medical providers, my scope & my experiments on my own body tell me about my condition and I get such great info collectively from this group about the condition of having a j-pouch and the permutations thereof.  I get great ideas about what to try (and what to avoid) from you lovely people. 

I think Scott's comment that what works for one isn't going to work for another is a good reminder, obvious as it may be to some. 

JJmarc, I'm sure Scott F will share freely whatever information you would like. This group seems pretty open, including Scott. I'm sorry you're going through a bad time with pouch management. That's why this group is here...to help!  Lots of docs don't know that much (or anything!) about the j-pouch and we don't always have access to specialists, so we can get tips here to share with the docs.  It sucks to be forced into experimenting on ourselves especially when the system is already down, but it seems to be the only thing we can do since we're all different. I hope your journey brings you relief ASAP!

Sara - thanks

i will get it done by my surgeon for sure but since he  resides in a different city i will plan it out at the earliest

till then i am at the mercy of my local GI consultant ( not a great one)

@Jmarc posted:

Yes, you’ve stated the obvious in that it would be fool-hearty for anyone to assume what’s good for one is good for another. These FORUMS should be recognized as just that. A place to gain perspective on options and treatments that we might otherwise not have known about.

On that note, Scott, I see you are treating with Flagyl & Cipro. I used to take both on a rotating schedule i.e. 30 days flagyl, 30 days cipro. Results were so-so. Stopped the cipro over concerns about possible long term side effects but flagyl alone has proved to be less effective. My (less than stellar) doc has not mentioned the concept of taking these together but the chronic inflamation is wearing me down and I’m pretty much willing to try anything at this point. So, is it my understanding that you are taking these together. I will certainly understand if you are not willing to answer this question in this forum. Either way, I will discuss it with my doc. Thanks

I do take both Cipro and Flagyl now. Cipro alone worked great for about 8 years, but it slowly lost effectiveness. Flagyl alone had never done the job for me, but adding it to the Cipro did the trick, and the combination has worked well for an additional 8 years so far. Combining antibiotics when necessary is pretty standard in chronic pouchitis, but it also increases the set of potential side-effects, of course.