I get an annual scope for my K pouch.  There is prep.  Some docs use anesthesia, but some allow me a pass (love to observe procedure.)

As for doctors, Dr. Dietz, who did a great job creating my K, is in Cleveland, but at University Hospital.  If NYC is convenient or of interest to visit, then Columbia is the place to go.  Dr. Shen specializes in Pouchitis.  Check out the master list in our Korner.

Pouchitis plagued my J-pouch and was its demise.  A no refined sugar and no simple carbs diet reduced the symptoms.  I stuck with the diet as it feels right for me.  Went off it for awhile and got pouchitis w the K. Ok, I get it, it is not for everybody.  All of us are tuned into our GI systems and discover our personal silver bullet for diet and activities.  I remain convinced that out GI systems have own neurological system, not a brain per se but a system that links it to entire body.

Keep us posted.  BTW, even Dr. Shen does not recommend VSL.  Jan

Thanks Jan. I agree that what works for one, may not work for another. I certainly haven't gone the strict diet route and realize that it may provide benefits. I remember thinking that before my first surgery way back when also.  I have seen some success with VSL#3 (or at least a Placebo effect) for the past several years. This year, the pouchitus won over the VSL#3. 

I guess my main question is if the Flex Sig is what the normal scope that our K Pouch Doctors would do?  I was comfortable with Fazio, Dietz or Shen doing my scopes back at the Cleveland Clinic, but they were experts in the field. Having a non-expert GI doc say he is going to do a Flex Sig to see what was going on just got me nervous. If the scope that we would get is the same as the Flex Sig, I am less concerned I think.

First off I think of the flex sig as scope for lower part of colon.  And of course you and I are part of the Ken/Barbie club.

The K-pouch scope enters through the stoma to check the pouch and also part of the small intestine.  They take biopsies no matter how it looks--at least in each of my scopes.  Observation, confirmed by biopsy can determine whether you have pouchitis.  My regular GI doc, in Boston, is extremely capable but he won't do the scope.  I have switched to NYC docs because transportation is easier.  Otherwise Dr. Dietz would be on my list.  Are you able to travel for a scope?

Another thought is importance of frequent evacuation and often irrigation, if not every time.  The purpose is to keep everything with nasty bacteria traveling through one's system so it doesn't take up residence as pouchitis.  Clearly not medical terminology.  I use a large enema bottle, 7.8 oz, as my go to irrigation tool.  Lasts for several months and easy to pack in travel bag.

Diet makes a big difference, what diet one latches onto is tailor for their system.  Keeping a journal helped me figure it out.  Not easy, but glad to have done so.  jan

I’m not sure of the proper medical equipment terminology, but I know that Dr. Kiran and Dr. Ashburn both refer to it as a “pediatric scope” and this is the only one that should be used.  I’ve never done any prep for a scope. I eat very light the day before and not much on the day of the scope. Immediately before my appointment, I empty and use copious amounts of water to irrigate and “clean” the pouch. I would be hesitant to have someone inexperienced with continent pouches perform the scope, but sometimes the travel to NY, OH, or NC is a barrier to our care.

I agree that the travel can be a barrier.  If it is, perhaps your local GI doctor could consult with one of the others who you have mentioned.

Hum, no prep.  Will have to review that with the Columbia doctors next time.  Thanks for the tip!  jan

I only get scopes as needed usually for a pouch twist, a valve problem or leakage (normally due to my pouch falling off of the wall).

I stick to a light meal 24hrs  prior to the scope and no fibers. I switch to clear fluids after 6pm.

That is it for the prep! No bowel prep, no magnesium whatever.

As for the scopes, I have never had any anesthesia since I've had my K pouch.

I watch, comment, direct traffic so to speak.

They use a simple child's scope so as not to injure my pouch and usually inject opac afterward and take a few pictures.

Depending on what they find, they will take a biopsy or not...at least that is how it happens here.

Good luck

Sharon

I go to dr Shen yearly for my scope. He uses miralax for prep, 2-4 ounces is always enough.

He also started me on entivyo for pouchitis and it is still working after 2 1/2 years.(local dr does orders for this) most local GIs know Shen is the expert!!  Previously I was on the rotating antibiotics and ended up with c diff. I wonder if Dr Shen still does video visits?? He said he really enjoyed doing them during Covid. Maybe you could get another opinion from him??

good luck.

like sharon I don't get anesthesia for my scopes.  one reason is needing to be picked up by somebody, which doesn't work for me as not in my home town.  but biggest reason is I want to see pouch lining condition, and be able to communicate with doctor during/after procedure.  this is especially helpful if there is a problem.  jan