The two doctors I have heard the most on this site are : Dr. Bo Shen and Dr. Remzi- they are both J-pouch experts in surgery regarding this. I do not know if they are in your hometown but it may be worth traveling out of state for them. There are a lot of people on here that travel out of state for their pouch care.

Hope this helps and please keep me updated

Thank you for that. I think they were at CC. But so many people have left there. I don’t know if either or both are still there. Anyone know?

Dr Remzi is the best!  But he is no longer at Cleveland Clinic.  He is at NYU Langone in New York City.  He is hands down the best surgeon for what you need.  My son was also an extremely difficult case, with Dr. Remzi redoing the original pouch.  In addition to doing several huge surgery’s.  Just tell him Jeffrey sent you!  He is worth the trip to NY.  

Thank you for that. I guess if he’ll see me, I’m going to NYC.  

Dr. Remzi did my surgeries and he is wonderful and one of the most experienced JPouch surgeons in the world. He recently moved from NYU to Northwell in Long Island New York. Super guy.

@tulsamom posted:

Thank you for that. I guess if he’ll see me, I’m going to NYC.  

Let us know how it goes!!!

Thanks everyone. So I looked at his website. And he doesn’t take my insurance, which is Blue Cross Blue Shield, which I thought was widely accepted. Anyway, anyone with experience on this type of issue? I lost my job last month, have limited funds, and have a pretty good ACA plan, but it does no good if the doctor doesn’t take it. Have y’all heard of him working something out with people with difficult finances?

Check with his office. Sometimes the websites are not accurate with insurance. I’d call before making any decisions

@tulsamom posted:

Thanks everyone. So I looked at his website. And he doesn’t take my insurance, which is Blue Cross Blue Shield, which I thought was widely accepted. Anyway, anyone with experience on this type of issue? I lost my job last month, have limited funds, and have a pretty good ACA plan, but it does no good if the doctor doesn’t take it. Have y’all heard of him working something out with people with difficult finances?

Damn! I never heard of Blue Cross BlueSHield not being accepted, that is widely accepted. I would call the office and ask them, maybe their website is limited in info. Definitely call them and let us know what happens

I did just call and they say they do take it. I have a virtual appt. with Dr Remzi in September. Going to get my local doctor to send the referral and medical info to them tomorrow. I never thought I’d get to meet the famous Dr Remzi I’ve been reading about here, all these years. I’m sure he’s dealt with my issues before. Thanks to everyone!

@tulsamom posted:

I did just call and they say they do take it. I have a virtual appt. with Dr Remzi in September. Going to get my local doctor to send the referral and medical info to them tomorrow. I never thought I’d get to meet the famous Dr Remzi I’ve been reading about here, all these years. I’m sure he’s dealt with my issues before. Thanks to everyone!

So happy you called!!!! Bluecross BlueShield is so popular

Hey,

That part at the top under my ribs, I always thought was the top of the overgrown jpouch where it attaches to the small intestine. But looking at it, it looks like the actual original j pouch structure. If that’s true, then what the heck is the big arm sized pouchy part that comes up from the pelvis? Any ideas? I suddenly am very confused. What does it like like to you all?

@tulsamom posted:

Hey,

That part at the top under my ribs, I always thought was the top of the overgrown jpouch where it attaches to the small intestine. But looking at it, it looks like the actual original j pouch structure. If that’s true, then what the heck is the big arm sized pouchy part that comes up from the pelvis? Any ideas? I suddenly am very confused. What does it like like to you all?

I would love to know that too! I tend to get confused when looking at x-rays of our pouch

@tulsamom, I see you have an appointment with Dr Remzi booked in, but I also wanted to suggest Dr Holubar.

https://my.clevelandclinic.org...22497-stefan-holubar

(Sadly I haven’t seen him myself, because I live in Australia, but I have heard good things about him and he has published some good research.)

My j-pouch has also done weird things. Mine just became enormous all over, which is called megapouch.

I am not sure whether your complication would be considered to be under that banner, but if you search the forum I made a post with links to papers on the topic that might be of use.

I too am trying to avoid a perm ileo. I developed my problems with adhesives recently though, and nobody will believe me. Adhesives can cause awful damage, but I even had a nurse at a hospital say to my face “We only want to hear about real allergies” when I tried to mention it. (Luckily I wasn’t admitted to that hospital!)

@Kushami posted:

@tulsamom, I see you have an appointment with Dr Remzi booked in, but I also wanted to suggest Dr Holubar.

https://my.clevelandclinic.org...22497-stefan-holubar

(Sadly I haven’t seen him myself, because I live in Australia, but I have heard good things about him and he has published some good research.)

My j-pouch has also done weird things. Mine just became enormous all over, which is called megapouch.

I am not sure whether your complication would be considered to be under that banner, but if you search the forum I made a post with links to papers on the topic that might be of use.

I too am trying to avoid a perm ileo. I developed my problems with adhesives recently though, and nobody will believe me. Adhesives can cause awful damage, but I even had a nurse at a hospital say to my face “We only want to hear about real allergies” when I tried to mention it. (Luckily I wasn’t admitted to that hospital!)

That is insane that you got treated that way!!! WTF is wrong with those people! Whatever happen to empathy and compassion???

I never heard of Mega pouch, but I believe it!

What is your plan going forward???

@Kushami Thank you for that. I will go right now and read about it. The radiology report referred to it as:  large patulous relatively adynamic j-pouch extending from the pelvis into the right upper abdomen and crossing midline to the mid abdomen. But megapouch may just be it because I read that it doesn't usually happen till 10 years after pouch creation and the first time this happened to me was 10 years in and now it's 13 years post that revision.

And, the fact that you have the rare adhesive allergy as well, makes me think they are related. Both rare conditions. We are rare jewels! I am curious how it all turned out for you. What was the process etc? You can DM me if you don't feel like discussing it here. Thanks so much for coming forward!

Hi,  wishing you the very best of luck!
You are doing the best thing ever going to get Dr Remzi’s opinion, h’s the best there is.
I have followed him from Cleveland to NY for the last 2 of my numerous surgeries. He certainly has the greatest amount of experience in difficult pouch situations!

Also is a very kind and caring physician.
I would be glad to speak to you about my experiences.
It always worth a journey to get the best. I do get most of my care, btw,  at the Cleveland Clinic, so I am very grateful for their care for many many years!!

Again,hang in there, we are all praying for you and sending the best thoughts !

Janice

Did you get a chance to meet with Remzi yet?

Jan, I sent you a PM.

Doug, not yet. My appointment is Sept 9, if I can’t catch a cancellation appointment sooner.

Remzi is not at NYU Langone any longer. fyi

@Pouchomarx posted:

Remzi is not at NYU Langone any longer. fyi

WHere is he now???

Following, May be seeking appt with Dr Remzi as well.
Ant other patients who’ve had surgery with Dr Holubar at CC recently, or kind of recently? Other CC surgeons or gastro who deal with problem jpouches?

FYI Dr Remzi is now at:

Northwell Health Center for Advanced IBD Care , on Long Island

Good luck Ljz. I'll let y'all know how the appointment went, after Sept. 9th.

@tulsamom posted:

FYI Dr Remzi is now at:

Northwell Health Center for Advanced IBD Care , on Long Island

Good luck Ljz. I'll let y'all know how the appointment went, after Sept. 9th.

Oh great!! Thank-you!!