Hi Lori,

Your story sounds quite familiar. I am 45yrs (love that, perimemopause heh?) I've had a pouch for ~20years but struggled with issues of stricture and straining to evacuate on and off, coupled with 2 fistulas as well for the last ~7yrs. Only recently was able to identify it is basically a cuffitis and surgeon has recommended pouch removal as well.

I have been able to  figure out that if I keep the rectal cuff very quiet then everything is good. I have managed this with cipro, flagyl, and prednisone in the past but just recently bit the bullet and started eating a autoimmune protocol diet. (thepaleomom.com) So far I think it is helping but the true test will be getting through my monthly cycle which seems to exacerbate things. I am in the mode to trying to preserve the pouch for as long as I can (maybe I can get to 65 - fingers crossed!!)

Anyways, now that I have vented, I think your decision if highly personal. I am in Boston and haven't made a trip to Cleveland or Mayo yet (but I have thought about it) so I don't know Dr Remzi BUT if he's coming from Cleveland he's likely quite good as well. Do you know if they will leave the loop in place or reconfigure the ileostomy as and end ileostomy when they remove the pouch? Would be interesting to know if Remzi will even have to touch the ileostomy that is working really well for you?

On the flip side, since hopefully like this will be your last foray with surgery you would likely have piece of mind working with your previous surgeon who has already gained your trust. There is a lot of value in that and it should only be a few visits to deal with correct?....  I think that is how I would go when my time comes but I don't think you are wrong either way.....

hopes this helps

I had two different ileostomies and pouch adjustments until Dr. Remzi said he could "fix" me with another temp ileo and then a new pouch.  I took the chance and he was 100% correct.  If you see Dr. Remzi, he may suggest giving it another shot.  The good news is you seem to be doing well now so you are prepared to weigh the options!  But +1 for Dr. Remzi.  Best wishes! 

Lori, can you remind us what's wrong with your pouch. I know you mentioned fistulas but anything else? Did Dr. Remzi bring up pouch redo? 

To answer your question though, if he is a master at re-dos, I'm sure he is highly qualified in removing pouches too. 

Are you going ahead with his tests before you make a decision? 

Thanks for your thoughts/responses! I had a J pouch formed in 1992 for UC. I was re-diagnosed with Crohns in 2010/2012 and it has been a bumpy road since then.  I also have a stricture at the inlet of my pouch which has been asymptomatic for me personally (don't know if had any effect on anything inside). Remicade worked awesome for me but only lasted about ~2 years (developed antibodies) and Humira and Cimzia were useless for me. I don't have much faith in drugs (and I am a pharmacist!)...ok maybe not drugs in general...but drugs in my case. It would be so heartbreaking to re-connect, have another biologic fail, and have to go permanent Ileo then anyway. I really have lost faith in my body!

Dr. Remzi wants to examine me/run tests before giving me possible option(s) which makes sense. Cleveland Clinic said my pouch looks fine but I am worried about all the peri-anal issues that I have had. It doesn't matter how great my pouch looks if I can't get stuff out without angering things. Dr. Gorgun also performed fistulotomies on my peri-anal fistulas so I don't know how badly my sphincter was affected. No hate towards him if my sphincter was damaged b/c I couldn't tolerate the setons and needed some normalcy back in my life. My main reason for going to Remzi was to see if he thought a K pouch/BCIR was a possibility.  He said generally speaking, he would not go that route with a Crohn's diagnosis. If/when I get my pouch removed and my butt closed, the surgeon will create a new end ileostomy, so I will lose the awesome guy I have now. I am tired of mucus drainage from my rectum which is so unpredictable. Plus I will always feel like I am in limbo until I make some final decision or one is made for me. Now that I have met Dr. Remzi, I am torn about going through more tests and seeing what he has to say or just returning to Dr. Gorgun at Cleveland Clinic. I know the decision is ultimately mine, but I it always helps to hear the experience/opinion of others too! Thanks again for the input/questions and I wish everyone many more years of happy pouches!!

Lori I'm a patient of Dr Remzi's also - since 2005 at Cleveland clinic - and now in NY. I'm in PA also - where are you in PA? What did you decide about your situation?

Hi!

i am in Allentown PA. Where are you? And how is your health currently going? This is gonna sound crazy but I had an MRI and barium enema x-ray, and pouchoscopy with Remzi the end of August and I never personally got the results of these. I am not sure if I am not using their EPIC system correctly, but I can't see all the results(only blood lab results which who cares about them...hahaha). Remzi spoke to my husband tho and the possibility of re-connection did not sound good. At least not without trying more biologic drugs first and I don't want to go that route for a questionable so-so chance of outcomes. I will get the results before making any final decision but I guess my plan is to go back out to Cleveland eventually and remove my J pouch, close up everything, and get an end ileo. How is your experience with NYU Langone? Going there with Remzi doing the pouch removal surgery is also a possibility but I really love my ileo and am afraid to trust another surgeon to construct my ileo even if it is the great Remzi. Overall I liked my experiences at Cleveland better than NYU Langone but I am not sure that I had as many interactions at NYU Langone compared to Cleveland so that may not be a fair statement. I hope things are looking up for you. I am not a fan of fistulas and drains!!