Routine Pouchoscopies?

Some folks here get annual scopes, but I'm happy with less frequent scopes when I don't have symptoms of a problem. I probably get scoped every three-four years or so whether I need it or not. I've always used a gastroenterologist for scopes. The risk of cancer in the rectal cuff isn't zero, but it's not very high, either. I've never been sedated for a pouchoscopy, nor would I bother unless something major/painful was planned. The purpose of the prep is to get the poop out of the way, and some version of that is necessary, but arranging a driver is (IMO) usually not needed.

The risks for someone with FAP are entirely different, and frequent monitoring is essential in that case.

You're correct a pouch-o-scope is quite easy compared to a colonoscopy.   Last time I had one there was no need at all for anesthesia.   Doing that is like packing for a long trip when all you're doing is going a few blocks to pick up some groceries.  There was no need to down any of that disgusting tasting crap to clean your system out too, just stick with clear liquids and you'll be fine. 

I had scopes every 2-3 years for a long time, as I was doing well. But now I have chronic pouchitis, so I am scoped every 12-18 months to monitor it and get biopsies to check for dysplasia. While I did not have preop cancer or dysplasia, I am in a higher risk group because I had long standing UC (more than 20 years before colectomy), pancolitis, and extra-intestinal manifestations. 

I've had my pouch for over 20 years and have never had sedation for scopes, and do not need a driver (because there's no sedation). My prep is clear liquids the day before, a couple of Ducolax tabs the afternoon before, and tap water enemas before I leave for my appointment. My scopes take more like 20 minutes because my doc takes a lot of biopsies. I have always gone to my gastroenterologist.

By the way, the scope he uses is a pediatric upper endoscope, as it is much more maneuverable than a sigmoidoscope. It is coded as a sigmoidoscope without sedation, and my copay is the same as an office visit.

Jan

I have scopes at least annually due to chronic inflammation and I will have at least 2 scopes this year. The first one was done to monitor response of pouch and ileal inflammation to Remicade and the second will be both for that, and for the annual checkup for biopsies especially in rectal cuff area and to remove an ileal polyp as I have inflammation above the J Pouch.

My annual scopes for 24 years have all been with GI/pouch specialist.

Although my most recent scope was done without sedation and it's doable without sedation, I prefer getting sedated. My main issue is the pain from the air they pump into you. I find the gas pain to be a bit uncomfortable and the sedation takes the edge off of it. Everyone is different on this.

if you have a preoperative diagnosis of dysplasia in your colon, or any postoperative history of inflammation, annual scopes are indicated. If neither, less frequent scoping may be acceptable.

I've had my pouch coming up to 11 years, I've never had a pouchoscopy but do have a bi-annual gastroscopy of the Duodenum

Michael, FAP is a nasty disease and polyps can develop and become malignant in the pouch and rectal cuff as well as in the duodenum.  For that reason, my GI performs an annual scope exam of both “ends” and biopsies any polyps removed and any suspicious areas.  You are playing with fire if you don’t have regular upper and lower scope exams performed.  I suggest that you discuss this with your doctor ASAP.

Jan, I see in your post  that due to the fact  you have developed  chronic pouchitis as well as having  long standing UC prior to surgery, you have increased your pouchoscopies to every 12-18 mths. I, too, had longstanding UC of about 20 years plus dx of colon and rectal cancer pre surgery.  In addition I usually have some ulceration at  pouch juncture and acute and chronic inflammation. Biopsies always negative. My pouch is 31 years old.  Scopings are usually annual but this year due to change in insurance (going on medicare) I would prefer to wait 17-18 months and save a significant amount of money but not if it would be putting me at a higher heath risk,(my main concern is cancer/displasia). My doc said that would be fine to delay it an extra 5 months but I'm not sure if she was really tuned in to me at the time as she seemed a little rushed.  Do you think it is ok for me wait 17-18 mths rather than a year? Again, I am speaking mainly from a cancer perspective.  How fast would a pouch cancer spread? Thank you!    

With consistently negative biopsies for 30 years, I think this modest delay would be fine. If you developed new symptoms that could change, however.

Jan

I've had my pouch for 18 years, and get a scope almost every year, with my regular gastro doc (been with her since before my surgery).  I always have sedation... the more, the better.  I have no desire to feel anything!!  Also, my prep is very easy... nothing to eat after midnight, then 2 enemas about 2-3 hours before my appt. time.  No modification in diet, and nothing nasty to drink.  ��

There are some varying opinions on this.  Like any endoscopy procedure, pouchoscopies are invasive, so there is always some inherent (if even small) risk when getting one done, and hence there are some physicians who feel they should be done more infrequently. However, others feel that annual scopes are indicated, and in particular, if the reason for your colectomy was dysplasia, then it may be recommended that you have a scope more often as cancer can recur in the retained rectal cuff.

In my case, I have generally been scoped every other year, except when I was having a bleeding issue, and then I was scoped 3 times in 18 months. Right now I am back on the every other year schedule, and my surgeon's office contacts me when it's time to schedule an appointment.

As to whether you see your surgeon or GI, there is really no right or wrong answer, and it basically comes down to whoever you are following up with. I've been scoped by both my GI and my surgeon - the GI when I was having problems, and the surgeon when it was routine. But that was more a matter of availability, as my GI could get me in sooner.  If it's routine, some surgeons are a little "possessive" of their pouch patients and may prefer to do the scope themselves. But again, both would be qualified (obviously if they have an interest in pouches) so it's either or.

As for sedation,  I've had both with and without. My surgeon prefers to sedate but that is so he can go up a little higher and he wants me to be comfortable (I was never entirely out, though). If you choose not to have sedation, the sensation is not painful, it's more a sensation of pressure, like having A LOT of gas all at once. That said, it's your own preference as well.  If yu don't want to feel anything, then go for sedation. However, the good thing about skipping it, is that you can drive yourself home and go on with the rest of your day more or less uninterrupted (after you pass all the gas from the scope, of course. )

The current thinking at my hospital (St Marks which is one of the best in Europe) is that genarlly speaking, yearly scopes are unnecessary. I was about to go to bi-yearly after 5 years post colon cancer/pouch surgery, when I developed cervical cancer last year. Even thought there is no connection between the two, my Consultant has decided to keep to yearly scopes for the next couple of years at least. I am quite happy to have them every year (I am so lucky that the NHS pays for mine) and don't need any sort of sedation for them. I don't know about America but the scopes are generally carried out by specially trained nurses where I attend. I have found them to be much more adept with the equipment than any of the doctors who have scoped me!