Looking for experiences. My 18 yr old son is scheduled for October 4th 🙏🙏
He is the go to guy. Look him up on Twitter. His account has several jpouch redo videos . Most experienced jpouch redo surgeon in the US. You are in the best hands.
I heard he is the BEST. Just hear say.
I had my 1 year check up with Dr.Remzi today. He’s a godsend. Forever changed my life. I had a pouchoscopy and everything looked perfect. I also met with a new ( for me) GI Dr Chang in his office who was wonderful. The re-do is rough(2nd part) but with great support you get through it and it’s so easy to forget -cause your so busy living life. I do not take any meds & just take 1 Imodium & 2 teaspoons of medamucil. My bm output 1 year out is 5/6 a day. Good luck & hope this helps
NJSHOREMOM what was your original reason for redo? Glad you are doing well.
I am looking for the best GI surgeon on the East Coast. I do not have Twitter. Can anyone tell me what is Dr. Remzi's full name and with what hospital/practice is he associated with? THANKS!
Dr Feza Remzi at NYU Langone
Thank you! I just put in a request for an appointment. May take a while, but from what I've read about him it is worth the wait.
We had to wait about 3 months for an appointment
This is not really about Dr. Remzi, but a general statement about getting into a doctor sooner than the first appt for a new patient . If you call often—once a week or more and ask if there has been a cancelation you may get in sooner. I did this with dr. Shen at cleveland clinic (first appt) and got in 2 months earlier than original appt. Even if you ask to be on the cancelation list—it’s easier for the office staff if you call them.
Hope you get in sooner than 3 months!
I did 2 1/2 years ago at Cleveland Clinic. I still have minor leakage issues sometimes and constant irritation . Dr Remzi told me leakage could occur, and Dr shen says anal irritation is very common with redos. Wants me to do the hyperbaric oxygen chamber therapy. I don't have the money or the time to do that. Its every day for 2 hours for 60 days I think. Some of us work for a living..
Pouchomarx what was the original reason for the redo? Is the irritation from the leakage like butt burn? Any regrets?
first pouch had leaks and a sinus, I had a really bad ecoli infection after first surgery and almost killed me. I spent 10 weeks in hospital. I had several surgeries trying to fix it , but everything failed. had the redo. all surgeries at Cleveland Clinic. Irritation from the leakage, I would think or the pad I have there?? But Dr Shen states burning and irritation are very common issues with redos they are finding. Regrets, not really. I hate the minor leakage and this irritation but I will take it over having the bag
Dr. Remzi's office called me back and sent me the new patient paperwork. Won't talk to them about an appointment until Tuesday, so I hope they can get me in sooner rather than later. I am also considering trying to get into the Mayo Clinic to be considered for a jpouch re-do. My rectal cuff is still diseased and I found out that several people who had he same surgeon as I have already had re-do's for the same damn issue. NO one told me the surgery could be done without leaving a piece of rectum behind OR that the piece could cause so many problems. The quality of my life is bad and I do not want a permanent ileostomy. My greatest concern is, if I get approved for a re-do, how I need to present my case to the insurance company so the surgery can be covered. I am not rich. Thankful for a forum that lets me vent.