I still really believe your cuffitis can be "medically managed" unless there is something else going on that hasn't been uncovered yet - like an abscess or a mechanical issue. You do need to get to an expert GI doc to focus on uncovering anything and trying to medically manange things- hopefully Dr. Shen at CC will be able to do that for you. I have never felt that surgeons were the best people to take care of post-surgery jpouches. GIs seem to be so much more knowledgeable.

If you are going to try oral meds for cuffitis why wouldn't they try ASAs or localized steroids like budesonide before going to 6MP or biologics. Also have you done rowasas....a lot.. twice a day and for many weeks in a row?

I think a pelvic MRI is not used to show intestinal inflammataion. I think thats to hunt abscesses mostly. For intestinal inflammation in top of pouch and down usually thats what a scope with biopsies is used for. For small intestinal issues above that, usually its a CT enterography.

Also, I have never heard of them not using the orginal ostomy site. I now have had FOUR ilestomies ... all at the same site... and no problems with any of them.

I hope you are able to get some rest while you work through this difficult thought process with all of these doctors. Good luck

Thanks so much Liz for your valuable insight.
I greatly appreciate it.

I am waiting to hear back from my original surgeon on the difference in ostomy sites as I was surprised by this also and obviously not happy about it. In addition, my first surgery was lapo and the thought of midline incision was not to pleasing either. The omentum around the cuff has me concerned also as I am sure it will complicate the surgery, if needed. My surgeon always uses this mode as extra protection for the vagina from fistulas with the stapler.

I am scheduled for Cleveland Nov 11/12 and hope I can medically manage to wait that long. The cuffitis is pretty severe with night leakage occurring a lot now..not pleasant. The rectal steriods are just making it worse so today I started back on canasa (1 am and 2 pm).

I emailed my GI today and told him the seriousness of my situation and I want to start some other meds (possibly sulfasalazine, humera....). 6 MP may just take too long, and the sulfa takes awhile also and I never had a lot of success with it while I had UC, but now that I think about it, my cuff was NEVER inflamed like this in 24 years and I was on sulfasalazine that entire time (of course with MANY repeat doses of prednisone over the years).

I do need to have the MRI next week as the SSO surgeon wants to check for fistulas or sinus tract and I NEED to know. I was upset that my original surgeon who has a stellar rep for jpouch surgery has not requested this test or a pouchogram (felt it would aggravate my issues) or blood work for crohns (GI did this). The only issue I have with this is Cleveland is going to make me do this test again and I am not sure I can deal with another contrast test in the tube with drinking all that ****. I am wondering if I should hold on this test until Nov 11 when I go to Cleveland.

I may allow the SSO surgeon to scope my pouch to get another look at the actual pouch condition prior to considering any surgery. He does this in office as my surgeon does and provides conscious sedation. I know he may want to biopsy my cuff to be safe before any surgery. He has done over 900 jpouch surgeries and ALWAYS used the hand sewn technique. He also has a test for anal muscle strength before pouch advancement surgery and hand sewing a pouch. Do you know if CC does this test? I want another opinion on the state of my distal pouch as this may very well impact the success of pouch advancement surgery.

Thanks again. I will keep this thread updated.

Also, no one has even suggested rowasa for my condition...

jeane.. my guess is that Dr. Shen is going to personally want to scope you. I cannot imagine him not doing that. In fact, with me, even after Dr. Shen scoped me, figured out what was wrong, and ordered other tests.. Dr. Remzi also scoped me under full anesthesia in the operating room BEFORE they came up with a definitive plan of action. I ended up having 3 scopes in 5months. One from my local GI, one from Shen, and one from Remzi. And all in less than six months from takedown.

Also, I try to hold off changing drugs before seeing an expert or doing a test. Just a month ago, my local GI wanted me to go on entocort, but I was going to see Dr. Shen. So I didn't do the entocort because I wanted Dr. Shen to see things as they really are, not how they are "drugged up".

Yes absoltely, I am sure CC would do a manometry test (the anal sphincter muscle test), and probably a defecogram (the pooping on the throne will watching it all on the screen test!) before they ever even began to discuss surgery with you.

I also think CC will want to rule out abscesses with a pelvic MRI. That was about the only test they didn't redo on me when I first went to CC. They did look at the CD from the one I had done locally one month prior.

It is my experience that not just the doctors arae more experienced at CC, but also the radiologists, and also other test people. So if I was doing it all over again, I would sure try to hold off and have ALL of the tests done at CC.

My local surgeons also had stellar reps for jpouch surgery. In fact, both had done fellowships at CC and were on best of surgeons lists, etc.. Regardless of that,.. they didn't fix me after surgery. And I am completely convinced that my problems were caused by their surgical errors. My pouch was too large AND I had efferent limb syndrome. Both are mechanical problems, which caused my pouch to not be able to function... causing permanant pouchitis, cuffitis, pain, and more. Clearly my pouch was built wrong. And the surgeon who looked at the pouchogram one week before takedown even said.. oh your pouch is very large. And he told me it was a good thing. How wrong he was. Furthermore, my local GI and local surgeons inability to diagnose these problems after takedown, did nothing but make me unhealthier and suffer. Sure the local GI said I had cuffitis and pouchitis and threw all sorts of drugs at me which none seemed to help the pouchitis all while I kept getting sicker. But he never figured out WHY. Dr. Shen figured that out. He guessed I either had mechanical problems or pouch ishchemia in my first 5minutes of meeting him. Then within less than 30seconds of starting his scope, he confirmed that my pouch was mechanically wrong.

Nov 11,12 is not too far away. Just 3 weeks. So hang in there. Try and relax. After that you should be able to put all the info together and make a decision that you feel confident about.

Liz,
I question some things in retrospect as why augmentin was thrown at me very quickly after my first surgery due to leakage. My takedown was also scheduled two weeks early due to what my surgeon called diversionary pouchitis. My surgeon commented my jpouch would be the size of a small football when it stretched and seemed pleased with the size. Not sure if that means anything. Last scope showed some mild inflammation in the limb snd again he was not concerned about it and discussed pouch advancement surgery for the cuffitis. I am sure I will not know for sure if my pouch was made in error until I get looked at down at cc my gi did scope it recently And told me it looked pretty good as far as the pouchitis went snd I am guessing if he saw anything glaringly evident he would have remarked. My cuffitis has gotten much worse in the last few months since he scoped me and even he commented on that when he saw recent pics from surgeon. When I showed the rarlier scope pics from my gi to my surgeon who gets all my medical records sent to him, he commented on how my cuff looked just as bad the day I was there as it did in June when the gi scoped me and asked me If i trust my gi....this coming from a surgeon I was never able to get pictures from a scope under biopsy and who never follows up on his patients. I should have known when he canceled my first surgery two times that was a warning sign to stay away.

Yes I do trust my gi. He is responsive, always follows up and is responsible for getting me in next month to be seen at CC. Enough said. Let's see if my surgeon answers the few other questions I emailed his nurse last Monday and if he calls next week as the nurses will have some excuse why he is not available. I NEVER call to request to speak with him. Last week I did. All of this will be a real sign if whether he plans on following up on me surgically or hopes I move on to another surgeon.

Re: ostomy re-dos. I had 3 ostomies; one from Johns Hopkins with a poorly constructed cuff; a second from the pouch re-do at CCF and the third 3 weeks later from a surgical error. All 3 times the ileostomy was on the same side, same place. This was in 2000-2001. Perhaps there is new research out there suggesting that changing sides is a good idea.