Sedation

They can manage the depth of the sedation, and even if you don’t specifically ask they won’t want you conscious for a dilation. “General anesthesia” usually goes a step further, including paralysis, and requires mechanically assisted breathing.

I hope the dilation works great!

I have had conscious sedation for all of my pouchoscopies and all 3 of my dilations last year. My Pouch inlet was actually dilated by an advanced endoscopist at Yale. Propofol is NOT conscious sedation as you are out and not conscious.

There are in fact levels of conscious sedation, and my GI doctor has a funny way of describing the categories. Light sedation is "twilight", medium sedation is medium, and deep sedation is "bombed" or "out to lunch." I usually go medium or deep.

BTW, in Connecticut, the law has changed and.now anesthesiologists MUST deliver any conscious sedation, and not a nurse. Nurses did so until 2022. It used to be that the anesthesiologist only was required to administer propofol, but now it's conscious sedation too. I believe this law stems from a number of cases of nurses and CNAs stealing fentanyl and selling it on the street, where it then is mixed with other street drugs for potency, causing a massive number of ODs and fatalities by street opioid users. Now they don't let them handle it.

Unfortunately for me, the anesthesiologist I was assigned to do my conscious sedation behaved like a Propofol salesman. My strong views on propofol being a rip-off of patients is well discussed on this board, but he never read those posts. Instead he tried to engage me in a long debate about the virtues of propofol. I told this wiseass that (a) he sounded like the President of the Marketing firm hired by the propofol manufacturer, and (b) no amount of convincing would change my mind and just give me the damn conscious sedation cocktail of fentanyl and versed. He clammed up and I must say did a great job on sending me into Lala land with the conscious sedation. And of course I saved $2000 on my insurer's costs and my future premiums, which are now around $1200 a month.

Thanks guys - actually a little anxious about this one, hoping all works out!
Unfortunately a bit of travel involved, as I have to head into NYC and my wife isn't a "city driver", so we'll have to catch a train / subway for a portion of the trip.  Something else to manage!

Curious - I am doing the suggested clear liquids today (though have been on liquids for 10+ days), and will do the enemas as well - if there is anything going on that is preventing complete emptying and they go in there and find a "clog" and some non liquid stool, will they remove?  Just anticipating waking up; if they dilate, or somehow else unobstruct, will I be running to the restroom 1st thing?

Kenny,

You will not wake up wanting to go the bathroom, although you may need to pass gas when you wake up as during any pouchoscopy, the pouch is inflated with air. So you will have the desire to fart, and will fart. You haven't indicated where the stricture is, but if he is dilating it during the pouchoscopy, a MUCH bigger concern is the risk of perforation of your bowel when they stretch out the stricture. I had 3 dilations of a stricture in my Pouch inlet and was warned with  each procedure of the risk of perforation and emergency surgery if that happens. They usually use a balloon to dilate but he may be using the scope itself. Depending on the stricture size and location. If you do perforate it will likely be spotted during the procedure and acted upon quickly. They may get informed consent from you to deal with that issue if it arises. I was told in rarer cases the perforation manifests after discharge and the patient develops extreme abdominal pain. Your doctor should have discussed with you how he or she is intending to dilate. Mine was done a little at a time, gently, first to 11 mm and then 15 mm and then 18 mm. The last of these dilations was in January and had held up through my scope on June 6, 2022.

Good luck Kenny and let us know how it goes.

Thank you for all the info. Regarding stricture, that is only an assumption at this point, but he did mention that it would be something that they would attend to resolve while I'm out. I will get some clarification on his process, etc, prior to signing anything. If it's safer, I am more thank willing to take multiple trips. 

This is my first pouchoscopy where I've been having issues and an awaiting diagnosis - it's a bit unnerving!

I will let you know how I do, thanks again!

Definitely concerned that my pouch won't be running clean tomorrow. I've been on full liquids (plus pudding) for over a week, including clear liquids all day today.  All output contains some sediment of stool (whatever is"stuck"?), no matter what I do. Tried an enema tonight and struggled a bit with it, output still the same.

Will they still be able to do the scope?

The scope should likely be fine. They can rinse out stuff using the scope. It wouldn’t hurt to let the doc know that you tried very hard to get it clean. That way if it’s a nuisance the context will be clear.

Figured I'd pass along today's findings to the experts here, as you guys always have great advice and kind words!

Pouchoscopy and the entire process was a breeze. Very happy with the doctor, team and comfort level.  Results...

No stricture (in or out), pouch looks "spectacular".  Some inflammation in the very low pouch / cuff area.  Photos showed some pretty "puffy" areas of tissue.  He also indicated a possible twist in the pouch, proximal to the anus.  No polyps or signs of cancer.  Upper pouch clean.  Back to regular food.

Action plan: Flaygyl 2 weeks, and a CT pouchogram to check for twisting. 

So odd to see an empty clean pouch and think about all the discomfort I've been having using the restroom.  The feelings of having to empty, with nothing there.  Reminds me of my UC days. 

I’m glad you’re closer to making sense of this!

I'm guessing that is a sound plan?

I'm unfamiliar with the symptoms of cuffitis (if different from pouchitis) - would that explain the ever-present discomfort at the bottom, and increase during BM?  Would that also give the feeling of tenesmus?

@KennyJG44 posted:

I'm guessing that is a sound plan?

I'm unfamiliar with the symptoms of cuffitis (if different from pouchitis) - would that explain the ever-present discomfort at the bottom, and increase during BM?  Would that also give the feeling of tenesmus?

Cuffitis could do all of those things. I might have started with a rectal steroid, but the Flagyl might calm things down enough to make rectal medications less fraught for you. The longer-term management of cuffitis is ideally (if the condition cooperates) rectal mesalamine, such as Canasa suppositories. And if it’s a pouch twist none of this applies.

THanks @Scott F !

Scheduled for pouchogram next Tues so we will see!  Not my favorite test, but when you need answers, have to do what you have to do.

RE: suppositories:  That was my doctor's 1st thought, but he hedged on that as, I guess, sometimes they "shoot up" into the pouch and might not always stay at the cuff (his words, not mine). I am willing to try so I think we will discuss that next week.  Also mentioned Cortifoam (?) - I have no experience with this.

I would image it is possible to have both inflammation and a twist (or a twist only when attempting to empty)? 

Hey @Scott F - just re-read your previously reply, specifically "longer term management of cuffitis" - is this to say this is something that will never be "cured"?  I've only taken a handful of doses of the Flagyl, and can already see some improvements (much less pain / pressure during and after BMs), though still have general discomfort.  I can't say I love the way it makes me feel otherwise (nausea, dizzyish, sort of a "not myself" type feeling).

I suppose if you are saying cuffitis will come and go (as does pouchitis), at least I will know the symptoms if/when they occur.

With some relief in symptoms, I thought about forgoing the pouchogram, but will go ahead with it anyway.  I would assume it possible to have both inflammation and some sort of twist (etc) type issue.

Cuffitis can run the gamut from single or rare bouts to continuous trouble. It’s more like UC than pouchitis, and in general is a chronic condition as long as the rectal cuff is present. If you do need to manage it with medication there are likely to be choices that work better (more tolerably) for you than the Flagyl seems to be doing. I’m glad you’re feeling better, and I recommend you redirect your attention from a fantasy about being “cured” to obtaining a reliable diagnosis and a good set of options. Your idea of foregoing the pouchogram was (as I think you know) likely to be a mistake. It’s a nuisance to work out what’s going on, but it’s usually a bigger nuisance not to.

@KennyJG44 posted:

With some relief in symptoms, I thought about forgoing the pouchogram, but will go ahead with it anyway.  I would assume it possible to have both inflammation and some sort of twist (etc) type issue.

Very wise decision on your part. Do the pouchogram and see if it provides more information.

Can't say I've ever been referred to as wise!  My wife would never allow me to skip it anyway.  It'd be interesting if I have both inflammation and a anatomical/functional issue. Hoping for not.

The flagyl, so far, has certainly helped the pain and pressure I'd been having. BMs are much better, gas also moving.  One area it has not yet helped is the general discomfort / nagging dull urge to go.  Very reminiscent of my UC days.

Been pouring over previous threads on cuffitis, looking for any way to help myself via diet, supplements, probiotics, etc.  Probably a question without an answer, but why, after 20 yrs, would this come out of the blue.  Something I did?

Prolapses can indeed come out of the blue, sometimes due to straining, but prolapses don’t respond to Flagyl. Pouch twists don’t usually come out of the blue. My best guess at this point is cuffitis, given what was seen on pouchoscopy, but it’s best to be sure, if possible. Cuffitis can come and go whenever it pleases.

Another way to calm down inflammation in the pouch area is budesonide (e.g. Entocort). Not really cheap, but little side effects.

Thanks All - yesterday's pouchogram went off without a hitch.  Strangely, after filling with liquid (and emptying), they filled with air and took more photos.  Is that new? Didn't do that last time.

Anyway, pouchogram showed no twists or prolapses.  Only possible negative shown were possible kinks due to adhesion/scar tissue; GI thinks they might have been there for quite a while.

Additionally, biopsy from last week's scope show some pouchitis in addition to the cuffitis being treated.  We agreed to cut Flagyl from 3x to 2x, as it was binding me up (though I found doing the enema yesterday for the pouchogram really cleaned me right out...might do that more often).

Really appreciate the advise, kind words & support, always.

@KennyJG44 posted:

Thanks All - yesterday's pouchogram went off without a hitch.  Strangely, after filling with liquid (and emptying), they filled with air and took more photos.  Is that new? Didn't do that last time.

I mentioned in my second reply above that the pouch is filled with air during the procedure. It's done in every scope as an industry standard:

@CTBarrister posted:

Kenny,

You will not wake up wanting to go the bathroom, although you may need to pass gas when you wake up as during any pouchoscopy, the pouch is inflated with air. So you will have the desire to fart, and will fart.

You probably were not aware the last time, although my desire to pass gas after scopes has been pretty consistent.  The most prolonged farts I have ever had were after scopes.  Some can last 10 seconds or longer.

They actually filled the pouch with air during the pouchogram, as well.  Odd, but not uncomfortable.

Received the official biopsy results from the pouchoscopy, for those interested in the science of it all:

1) pouch, biopsy: small intestinal mucosa with active enteritis, focal erosion & mild architectural distortion; negative dysplasia.

2) distal pouch, biopsy: small intestinal mucosa with chronic active enteritis and erosion; negative dysplasia.

*no definitive morphologic evidence of viral cytopathic effect*

Off to google some of those terms.