CC update

Dr. Remzi did all 3 of my surgeries and I will not allow anyone else do anything when it comes to my health and the jpouch! I absolutely love him. He is a great guy, and I had to go back last week for a eua and he had to put a mushroom drain in. I feel so safe when I'm with him. And he tells me the truth and gave me my life back.

I hope you do not mind my jumping in on this thread.

I am planning on seeing Dr. Remzi and Dr. Shen in the next several weeks due to chronic cuffitis since my takedown 16 months ago. I am being recommended for pouch advancement surgery and a mucosectomy and although I have a highly capable surgeon who I trust very much, I just want a second opinion on the surgery as I know it is very complex.

My GI would like me to have some tests to look for a sinus tract or fistulas and I had the blood work done for crohn's testing this week also. I am not having any symptoms other than the discomfort from the ulceration in my cuff which has been scoped in June and biopsied by my GI in June and looked at again by my colorectal surgeon last week. I have been on cortifoam for a week and symptoms are improving.

If I had a fistula should I know it? I know if it were a vaginal one I would have symptoms. My colorectal surgeon did not mention anything to this nature other than recommending me for pouch advancement surgery and mucosectomy as I have been dealing with this issue pretty much since takedown even though we have been medically treating it pretty much continually.

My Gi would like me to have further tests like a pelvic MRI and pouchogram with barium enema and my surgeon feels the latter will just aggravate my symptoms more and honestly I am concerned about even drinking all the stuff for the MRI and how it will impact my pouch at this time.

I understand Cleveland does all their own tests on you. Have either of you had these tests done while at Cleveland and how did they determine you had fistulas?
Has Dr. Remzi performed numerous jpouch reconstructive surgeries? Any info you could offer would be appreciated and I am glad to hear you are both doing better and in such good hands!

Hi- I can't speak to any of the testing or fistula specifics (just had a colectomy). I know that when I went to Cleveland, I had all of my pre-op tests down in the same building in one day (x-ray, ekg, bloodwork).

I've seen numerous people on this forum talk about Dr. Remzi fixing their jpouch. I hope one of them sees this and can jump in, but if you search for "Remzi" you might be able to find their stories.

I've never had any of those tests done. I've only had the test done where the check your jpouch. And I know he fixes jpouhes all the time. My nurse prac was just telling my mom and I about all the reconstructive surgeries he does. Many of the people who were with me my first surgery were there to get a prior surgery fixed by him. If you are going to him you are in great hands and he will do everything in his power to make it better. I have a cyst now he doesn't want to label it yet and that's why he put the mushroom drain in and they think it could be a fistula. But when I first got it I went to my gyno and then during a check up she recommended me to see my surgeon bc it changed over a week. Very scary, and i called cc and they got me in the next day and the following tueday I saw dr remzi for an eua. And will be back up there for the same process nov 6 for him to either put a seton in or wait 3 more weeks.

Dr. Remzi is an absolute excellent surgeon. He did a pouch re-do for me last October. My jpouch was originally done by someone else and wasnt done correctly. Although the surgery was a 3 step process and took an entire year to complete I am soooo happpy with him and the Cleveland Clinic. Everyone who has him as their surgeon should feel extremely blessed. You are in great hands!!!!! I have only seen Dr. Shen once so I dont know him as well but he is the one that recommended Dr. Remzi and his diagnosis was made in minutes and was correct. Years of suffering had ended and years of feeling like a hypochondriac also ended. Anyone with any questions please feel free to ask away!!

Thank you so much everyone. I am mailing my medical record to Dr. Shen today and my GI is going to get me in for a consult. The cuffitis is pretty bad so I am praying I have time here before the surgery and I am not risking any chance I have of better success for pouch advancement surgery while waiting to see them.

aka.. thats one of the big problems with CC and Dr. Remzi. He is hardly ever there. Great surgeon, great guy... but to get things scheduled and followed up on.... its a different thing. Also beware... sometimes things are actually scheduled and then you get a call from his office telling you they are pushing it out because he is going to be out of town again. Even on post surgery appointments. Ridiulous.

Yes he does lots of pouch fix surgeries and lots of pouch removal surgeries. Thats why people wait for him and deal with the scheduling garbage. Cause he is the best of the best, knows his stuff and as danielle pointed out he is a great guy who treats his patients kindly.. when you can see him!

jeane.. if you are going to CC to see Dr. Shen.. then you probably want to hold off on any tests until that time. Shen will decide what you need and generally can orchestrate it all when you are there. And the people at CC are far more experienced at reading those tests than local people. I've had pelvic MRI, CT enteropgraphy, pouchogram with barium enema, small bowel series, defecogram, mamotery, and probably more that I cannot even name done there. Also.. Jeane if you do go see Dr. Shen also hand carry all of your records and any scans, etc.. on CD... even if you mail stuff in advance.

Also Jeane there are a lot of other fabulous colorectal surgeons at CC. You might want to just let Dr. Shen advise you on who to meet with should he deem surgery a possibility.

I was there today with a urogyn for gynecological issues related to jpouch excision and am back on same day as danielle for another EUA with Dr. Remzi. I swear I need to rent an apartment up there.

that must be the days he does his EUA's then. I am just glad they got me in quickly because I hate waiting. I really havent had problems though knock on wood with them moving my appt or anything. But now that I opened my mouth watch they will. That is awesome though we will be up there at the same time.

That's a thought - a CC patient apartment we all chip in with. Stay as needed, haha.

Thanks Liz. The issue is I have had four pouchoscopies in the last year (2 with biopsies). I know they prefer to have their own tests, esp if recommending surgery. I am going to hold off on the pelvic MRI and pouchogram as I would prefer not to have to do these tests twice.

My surgeon feels my pouch looks pretty good. I have mild pouchitis in the distal pouch (prob from anal stenosis from the ulcerated cuff). He felt pretty comfortable that removal of the cuff and pouch advancement with mucosectomy would clear up my issues, but I have been having these cuff inflammation issues for so long now I am not so sure. That is why I had the blood work for crohn's this week.

It is the cuff that is very ulcerated at the moment. I am concerned about dropping the pouch down and hand sewing as I do have some pouchitis in my distal lower portion of my pouch and I am not sure what that means when they attempt to handsew this area of the pouch after the mucosectomy and I did not get a real clear answer from my surgeon on this. I asked him if he could cut out some of the lower area of the pouch at the same time and he indicated he only has so much room to work with for the reconnection. I am also worried about the incontinence factor after this surgery, as well as infection and regrowth of tissue.

I am mailing all my info out to Dr. Shen tomorrow and faxing my most recent scopes and yes I will bring my own binder with me. I guess I can ask for the CD for my pouchoscopy pics as I only have the written reports and copies of the pics. The last pics I got directly in the office fresh off the printer from my surgeon.

I did send him another email the other night asking a few more questions as he is aware I am going for an SSO. I hope he answers them for me as going back into NYC for a few additional questions is nuts esp after what the office fee and scope fee will be and my surgeon does not accept insurance. I will admit I think it will be VERY hard for me to leave him for another surgeon but CC takes my insurance. My surgeon He has been following me for 4 years now and has done a multitude of jpouch surgeries as well as corrective ones (most likely one of the best in NE).

I honestly believe my issues are from UC act up in the remaining ATZ and were not surgery orientated as both my surgeries went off with no complications other than a minor stricture at the anastomosis site and an ileus at takedown.
If this is not the case, then possibly I have not been diagnosed correctly and I am actually dealing with crohn's.

Thank you so much for your encouragement and recommendations. I greatly appreciate them.

PS. I love the CC patient apartment idea, but would have to have CLEAN bathrooms from all us jpouchers. My husband wanted to fly and I am on the fence as to the additional cost. The drive is 9 hours from where I live.

I would definitely bring your husband, especially on first visit. Raid the piggy bank, sell something, or just drive. I think it would be very important for him to go with you. It can be overwhelming, especially if you get shuffled around for tests. Also, if they decide to do any scope, etc... nice to be able to have sedation. They won't do that without a significant other there. But most importantly, having someone else there with you to listen through everything and speaking to the docs with you is extremely helpful.

Even now with my seemingly biweekly adventures to cleveland, I try to bring my hubby when I really need a doctor to listen. But 2 weeks ago when I went solo to see Dr. Shen, I ended up having to get an unplanned ileoscope with Dr. Shen..so had to be sedation free. Fortunately it was no big deal, other than the terror I put myself in waiting for it!

and ps. very funny about the clean bathrooms in the future rental apartment!

Liz,
You are brave..an ileoscope with no sedation..that must have been tough. Thanks so much for all the information.

jeane-
Have you received the results of the blood test yet? I think that will tell you a lot.
Also, my GI started me on hydrocortisone ac 25 mg suppositories for the anus being ulcerated and that has helped me out a lot. I did have some ileitis but she wasn't too concerned for now. I go back to her in a month to see what the next phase is. Oh yeah, I am anemic too so on the iron pills, for now. Did they ever give you suppositories (canasa didn't help me at all).
Keep us posted...!
Roberta

Roberta,

Gad to hear you are dong better. Yes.. I took the anucort very briefly and then moved to canasa for fear of skin thinning. I know I did not give the anucort enough time. Same thing here..canasa did not too too much...did relieve the symptoms but inflammation still there. I am trying cortifoam at the moment and it seems to be helping so hopefully I may be able to avoid the surgery.

I am still waiting on the blood test results and I too had a little inflammation in my limb portion of the pouch and distal portion. My surgeon also says everyone has some type of inflammation in their pouch even when they are feeling great so he too was not very concerned.

I am learning (after 16 long months), that using a squirt water bottle after emptying my pouch (EVERY time) helps me further empty what may be left in my pouch. I am sure I have thought my pouch was fully emptied before, but until I started to use the squirt water bottle to almost stimulate my rectal muscles, I never realized, how much stool still needed to be emptied from my pouch (two or more passes easily after this to completely empty--sorry if TMI). No matter how much you clean after, if there is residual stool laying in the bottom of your pouch, it could create issues as well as potential cuff issues. I would bet that has added to my lower distal pouchitis and maybe even aggravates my cuffitis, although I do not have leakage.

If you are not trying this, see if it may help your cuffitis. I use the plain old plastic condiment bottles you can buy at Walmart and fill them a few times (or fill three of them at once and leave in bathroom) and just use them as you would a bidet--spraying the water at you back end. I just have not gotten to the point of restructuring my toilet for installing a bidet yet. Maybe that will be my xmas present this year (sad huh??).

jeane -
Thanks for the tip on the squirt bottle. I invested in a bidet and over used it at the beginning of all this fun and it keeps malfunctioning on me so, I just unplugged it for now. I will certainly have to see if I can get it to work again.
Isn't it funny what we think or want for gifts, now!

Roberta

I would say "do the drive" as well.

You might save yourself like 4 hours each way if you fly. But if you drive then you have your husband AND you have less hassle if you have to stay an extra day.

Just my 2cents.

And I'll miss you guys by like four days. I have an appt. on the 2nd (steroid shots for my pyoderma). Good luck to both of you!

jeane have you ever had a defecogram? makes me wonder when you say about emptying your pouch not all the way.
and active...sorry to hear about they pyroderma. think those steroid shots must be tough with that. good luck

Thanks. It definitely doesn't feel nice, but it seems to be responding to the shots!