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I got my J pouch done by Dr. Adrian Greenstein at Mount Sinai back in the spring of 2012. As you may know, he was a pioneering surgeon, having done the J Pouch since the early 1970's. "Was," being the unfortunate key word there. Two days ago I received a letter in the mail stating that he'd passed away in April. The letter was from his son, colorectal surgeon, Dr. Alexander Greenstein, who worked with him. He's looking for monetary donations in his father's honor, to set up a database of all the research data he'd collected in his career, spanning 50+ years. Here's a link to his obituary.    http://www.legacy.com/obituari...y.aspx?pid=185184520

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So an esteemed surgeon and his son who is a surgeon are asking for money? really? I think I have donated to the medical field enough in the past and still currently.. Almost had to file bankruptcy, mainly due to the US issues with healthcare, but no thanks. Sorry I am just bitter about the amount of money that I have paid out since 2008..

I just posted this message because I wanted to make people who may be thinking of going to him, aware that he died. Normally I'd wholeheartedly agree with you about the money collection thing. The healthcare system in this country screws people over in so many ways and I'm bitter about it too. I know all about that! But the Greensteins are a rare exception. Dr. Adrian and his son was/are the kindest, most loving, competent doctors I've ever had. He was old enough to remember when medicine used to be about helping people and he taught his son well. When I lost my insurance coverage he was totally understanding about it and waived his usual fees for my follow up visits. It's supposed to be $150, but he'd charge me $20, "just so the billing department doesn't give him a hard time about it," in his words. How many other doctors do things like that in this day and age?

The whole reason I even needed a J pouch in the first place is because lapses in insurance led to me not being able to afford my regular blood work. My colitis was always in full remission as long as I was taking my medicines. My GI at the time, refused to give me extensions on my prescriptions (Which my pediatric specialist always did, previously), so there was no reason for him not to do it too.  Throughout the whole 3 years I saw him, he was incompetent, rude, and straight up abusive, (aside from the whole prescription/insurance issue) So to go from that, to the Greensteins, was the BIGGEST contrast imaginable. They basically restored whatever faith I had left in the medical profession.       

I was also a patient of Dr. Adrian Greenstein.  He was a wonderful doctor and compassionate man.  His staff was also wonderful especially George who was his assistant and nurse.  Dr. Greenstein is always in my thoughts and prayers.  I had my surgery in 2010.  I was going to a Gastro  on Long Island,  he was not listening to all of my complaints and issues.  I did my research and all my answers led me to  Mt Sinai Hospital.  By that time my colon was completely destroyed.    My first appt. at Mt Sinai  was with Dr. Itzkowitz ( Gastro) which also is a wonderful and compassionate Dr.   He sent me to Dr. Greenstein and rest is history.  My surgery didn't go that well because I was very sick and weak.  I have some problems but with the help of Dr. Itzkowitz, Dr. Greenstein at the time,  and this web site gets me thru all I have to deal with.  I am still under the care of Dr. Itzkowitz.  If I hadn't switched Drs.  who knows what would have happen to me.  But I am here and very grateful that I became under the care of Dr. Itzkowitz and Dr. Greenstein.

 

I’m not on this forum too often but just found out tonight that Dr. Greenstein died 2 1/2 years ago. He did my j pouch, with Dr. Heimann, in 1994/1995 and saved my life. He was without a doubt the most humble, caring, and knowledgeable doctor I have ever met. I had a similar insurance experience, where he just accepted what he was paid and didn’t know how much it was, nor did he care. There is no doubt he was doing exactly what he was meant to do. His brother saw me in the hospital to check in as he had a vacation scheduled a few days after my first surgery- also very nice and caring, but tall, big, boisterous, with a loud voice. Same focus on the patient though. I didn’t know his son followed in his footsteps but that’s awesome. 

He told me I was the 176th j-pouch he had done, in 1994. I don’t know how many he did overall, but the world is a better place because he was here. 

I haven’t been to mt. Sinai since about 2002, when I went to a fellow bass player who had just gone through surgery #1, but when I was there, the hospital certainly wasn’t putting its money into the small comforts, it was all going to research, etc (that’s not necessarily bad). When I was first able to eat following one of my surgeries, I really wanted something to eat that was not the food on the tray. He walked me down to the cafeteria so I could buy real food when no one was able or willing to let me go down there on my own. That’s the kind of guy he was, probably took 15 minutes, which could be an enormous amount of time for a busy surgeon, but it meant the world to me and really helped my recovery. He thought nothing of it. 

In my very first appointment with him, along with my parents as I was 19 at the time, he answered every question we had. When the nurse prompted him to move along because people were waiting (we waited for a while too but now I knew why), he said ,”we aren’t done until they have no more questions.” 

I found out he had died when looking him up on mt. Sinai’s website tonight as I’m going to to see someone there again I think due to the pouchitis that won’t let up. I came across this video if anyone is interested:

https://youtu.be/NuxXhJ9hgH8

RIP. 

Hi Melissa, I didn’t know what kind of doctor he was, but it said in that video he was a geneticist. I think he just had him check because he was away. 

What a special person he was. All I know is that I wouldn’t be here without him and his team, and I got into human services (now a clinical social worker) because of my experience with people helping me at mt. Sinai. 

I hope that you are doing well, it’s good to hear stories from others who had good experiences with him (I can’t imagine there are many people, if any, who would have negative comments about him)

I had my surgery done in Mount Sinai by Dr. Irwin Gelernt in 1992. He was also one of the pioneers of modern colorectal surgery in the US and did the very first K Pouch surgery in the US in 1970 (after studying with Dr. Nils Koch). I am guessing that Dr. Greenstein probably worked with him although they were in different practices. Although my surgery was done over 27 years ago, at that time Mount Sinai was top 3 in the nation for colorectal surgery and probably number 1 in the nation for J Pouch surgery. The care I got at that time was amazing.

Dr. Gelernt passed away in 1996. I think he was only around 60 at the time. Had a heart attack. Here is his obituary from NY Times:

https://www.nytimes.com/1996/0...estinal-disease.html

Last edited by CTBarrister

Dr. Gelernt was an excellent surgeon and a kind man. He was recommended by my then GI as “the best colorectal surgeon in the country and he is at Mount Sinai.” It took months for me to get an appointment with him, and then more months before I could schedule surgery as he wanted me to lose weight (and it was mandatory-something about adipose tissue making the surgery more difficult). The best way I can describe him is that he had the voice of God (like Burl Ives) and spoke with a perfect economy of words- he told you all the important stuff and no more or less, but did so in a reassuring and confident tone. It’s rare in life that I have met a person whose every single word out of their mouth I took to the bank, but with him, I did. I had more confidence in him than any other doctor I have ever met in my life.

Last edited by CTBarrister

They are not good at cooking food for patients! Or not in 1995! I remember that I still had a manual bed too, you had to turn a crank to adjust it. My wife was just in our local hospital here for 3 days and her bed was amazing, even had usb chargers built in! But, she still has no voice from where the breathing tube hit her vocal cord 7 weeks ago. So I’ll take less “comforts” and better medical people anyday. Of course, they probably don’t have manual beds anymore at Sinai! 

I feel the same way. They put the money where it counts and it shows. The rooms sucked, for the most part. But I actually thought the food at Mount Sinai was pretty good when I was there in 2012. They give you pureed vegetables because that's exactly what you need when you're recovering from this type of surgery. Bring some chicken or beef bullion powder and seasonings from home and you can turn it into vegetable soup. Didn't work out because I didn't have the energy to get up and get it out of my bag, though. But the food was good. Especially the stuff from the kosher kitchen, which they sent me a few time, for some reason, even though I didn't ask for it. 

The best thing about Mount Sinai- and my stay there after my colectomy was 8 days because I had some complications which they dealt with properly- was the comraderie with other J Pouch patients. I was on a floor where there were a number of other J Pouch patients. All at different stages. Some were there for step 2 and showed me their bags and scar, some were post step 2, and others like me were pre step 1. I remember one in particular who was a really beautiful blonde haired woman around 20 years old or so. I was at that time 29. We had both checked in a day before our prospective surgeries for testing and as I recall they at that time sedated you or gave you a sleeping pill the night before because they wanted you sleeping well and without stress. Anyway I had a long chat with her in her room, we really got along well and I figured she would be my J Pouch pen pal. After my surgery when I could get up and walk I went down to her room and she hadn’t had surgery. But was in her bed. She looked up at me and she was in tears and told me her presurgical tests had come back off, and that they thought she had Crohn’s Disease, and were going to do some other tests on her. She was so wanting to have the surgery and get it done.  She then was discharged. I never found out what happened to her. 

My roommate I remember quite well. He had leukemia and was at the end of the line. He passed away around a week or so after I was discharged, as my parents and I had stayed in contact with his wife. During the 8 days after my colectomy, this guy was having his wife bring in incredible takeout Chinese food every day and the smell of it was driving me nuts, because I love Chinese food. And I was getting fed intravenously and couldn’t eat a thing for 8 days due to ileus and NG tube and other complications. The guy was dying of leukemia, but still had his appetite at that point. Anyway I finally asked my parents to go and check out the Chinese place his wife was bringing food from, which they did and they liked it. Was a few blocks from the hospital. Can’t recall the name of it.

This all took place April 1992. To give some historical perspective I recall watching the LA riots on TV after the Rodney King cops case at that time. I also recall watching David Cone pitching for the NY Mets at that time.

Last edited by CTBarrister

Ugh, NG tube, that’s my nightmare, I had them after the first and third surgeries due to blockages from adhesions. That wasn’t fun at all. 

and come to think of it, I don’t remember much about the food except that i hadn’t been able to eat for weeks at that point and plain Farina was not what I wanted to see for sure! It was what I needed without a doubt, but not exciting. Nor could I have jello for many years after. 

But, I’m alive and even though I’m being tongue in cheek about these things (but not about the care, that was amazing), I’m very grateful for everything they did. Dr. Greenstein apparently told me parents that the j pouch would probably give me a good 10 years, then I’d probably have to have it reversed or redone, something like that. On year 25 so far, and even though it’s been a rough one with pouchitis and c-diff in the past year, I think it will even out eventually. 

My J Pouch has lasted 27 years and it’s working as good or better now than it ever has. The notion that J Pouches have some limited shelf life is a fairy tale. 

I have struggled with Pouchitis at times and it’s not been perfect, but I feel there is a good chance now that I will die with it.

I did have 2 surgical J Pouch revisions in 1998 and 2000, but those were not “re-do” surgeries. Instead they addressed a septum that developed in the pouch which was preventing the pouch from emptying completely. The 2000 surgery was a complete success.

Last edited by CTBarrister

No I got mine in 2012. I'm hoping if he said that, it was just because he didn't know how long it'd last then. One thing I think he and his son do different, is that they don't leave a rectal cuff of any sort. But maybe they did, back then. I don't know. You hear a lot on here about people having cuffitis because the little bit of rectal tissue that got left, gets inflamed and has to be treated. I heard other surgeons left up to a half inch of it. But when I asked Dr. Adrian how much he left, he said only like one millimeter. When I told others on this site about that, they were surprised because they didn't know that was possible.

In my case I had a simple, straight forward, confirmed case of Ulceritive Colitis. It seems like most of the problems I hear about on this site are from people who either ended up being diagnosed with Crohn's and got the surgery by mistake because their doctors didn't know, or people who think they have UC, but still aren't 100% sure or have some other weird intestinal issues in addition to it. Fortunately for me, I'm not in either of those categories and my pouch is doing fine as far as I know.

Seven years later I still haven't gotten a scope, though, so I hope there isn't some kind of problem going on that I don't know about. But I feel totally fine and eat normally and do everything I did before, so I'd be really surprised if there was a problem.

I did end up having to stay in the hospital for a month 2 out of the three times because of complications. But not usually anything bowel related, though. As I recall, I had to stay because I kept getting fevers and they didn't know why. It had something to do with some kind of mystery heart issue I have that causes my heart to beat abnormally fast all the time. I still haven't figured it out.  

I have been told by my GIs that Gelernt left a small amount of rectal cuff and that’s exactly how it’s supposed to be done, for the reasons mentioned in your post. But the limited shelf life of a J Pouch stuff is really a worst case scenario as mentioned in my prior post. There is an old pouch thread on this board and there are many people here who are 30 years plus J Pouch patients. At 27 in J Pouch years I am not old compared to some on here.

I didn’t mean to worry you! I’m sure things are fine if you’ve felt fine. I do know that he did leave rectal tissue, so maybe he refined it over the years. 

I didn’t hear him say it, apparently he said it to my mother, Maybe he was just saying it to be very conservative. 

Anyway, no worries, don’t want this thread to have any trouble so it can stay a tribute to him. 

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