I'm not going to make any excuses.  I love NYP Cornell hospital much more than Mt Sinai but I ran into a similar experience last year at this exact same time.  I was the last surgery(takedown) before the surgeon went on vacation.  I ended up with a small complication (abscess) after about 4 days.  Anyways....didn't make a lot of progress finding out what my issue was for about 5 more days of tests and waiting.  My GI was on vacation too.

Talking with the nurses I found out that the residents graduate the last week of June and the first year residences start July 1.  It's a big transition time right now and your stuck in the middle of it.  The first year residences are really nervous and don't want to make a mistake.

The worst time to have surgery/be in the hospital is July and December.  Avoid both at all costs.  June 30th, med school students have left, Fellows have left, residents are gone to their new programs, everyone is gone.  On July 1 the new residents all come in, med school graduates begin their careers, new fellows take over and no one know anything.  No one can find anything, know who to ask or where to go!  Been their, done that.  In December, docs are using up vacay days, everyone is going to parties, taking time off, etc.  the last thing you want is a surgeon who is in a hurry to get out the door for his family holiday party.  And if you do end up in the hospital, the powers that be are no where to be found!  Jeffrey's surgeon found out about his complications the day after Christmas by accident, the GI called his cell phone, not knowing he was out of the country!  Avoid these times as much as possible!

 

Ally, the people we had a Robert Wood were awesome!  I can't say enough good about them, and yes we were guests in both July and December as well the rest of the year in 2014.  I would be happy to give you their names.  The other amazing place is Uof Penn.  I could find out names if necessary.    the only reason we are at Cornell now is because Jeff's pouch complication is so rare.  We had a wonderful surgeon who had no serious complications and unfortunately, jeff developed the worst of the worst.  Also. NJ has no transplant program and can not effectively treat PSC.  That said, there was a fabulous GI who dones ERCPs all the time.  Loved her.  I loved them all over there and sad that we have to go elsewhere.  Message me and I'll give you the information.

 

 

Thank you Jeffs Mom where is this hospital? 

New Brunswick, across the street from Rutgers university.  And you can take the train right from Penn Station, get off in New Brunswick and it's a short walk up Somerset Street.

 

I live in NJ. I had a UC treatment of cyclosporine at mt Sinai in NYC that required a 7 day hospital stay. I HATED that hospital. Won't ever go back there. 

 

I had my j pouch surgeries in Philly at Jefferson university hospital. I cannot say enough good things about that place. I was very impressed. As Jeffsmom said about Robert wood Johnson in NJ, I have heard lots of good things about them too. 

 

Good luck....sorry you're in a rough spot right now. 

I ha e a friend who is a Dr affiliated at Englewood and said its a awful hospital.

AllyKat,

Sorry to hear. Do the other GIs at the Jill Roberts IBD  practice do the rounds if your doctor is not there?...

 

No 

Sorry, I thought perhaps one of those drs might be an alternative if you had met them, though I guess that could be an awkward switch. Maybe they are not a group practice but just practice even though they are in the same office. I hope you get some answers.

Ally, we are using dr Brian milsome at cornell. He is a gi. The surgeon we are using is new to cornell, dr shurula i think thats how u spell it. U r in the hospital at the worst time og year because oc new doctors, new residents etc. no one knows what the hell is going on. Make noise, lots of noise. Dont let anyone leave the room until u r dont yelling. Im sure u have done that already but keep it up as hard as you can. Get the head nurse in. Keep going up the ladder. Feel better

They sent me home and I'm having an awful time. I did make noise and even contacted patient service. Dr Scherl yelled at me for complaining. I was shocked! She was like Ive been following you all week. Following me from the stupid Internal med Dr who told me I have anxiety and it's in my head to her stupid residents. I complained to all of them and no one took me seriously. I was in such pain the day before I left I called everyone and no one came except finally the crazy Internal med doc who told me its in my head. I was shocked that the surgical team did not even come in. They said they would be back, stupid first year resident.  Oh, Milsom is on vacay and his mean nurse told me there is nothing wrong with me and to go away. I was like listen lady Dr Scherl told me its adhesions. Same situation like 5 years ago.  Can feel the spot that is stuck.  Showed everyone. Still would not get me in to see Shulka tomorrow, he's too busy, go back to ER. I don't want to go back to ER which I should have yesterday. Been on a liquid diet till I can sort things out. And Shulka is leaving for vacay till the end of the month so do you think he wants to start with me? I am really starting to hate them all. Ill be back on the phone tomorrow Not that it will do any good.This is not a GI problem and Milsoms nurse keeps pushing me back to the GI. Honestly I'm not making any of this up. I've been with these doctors for 16 years and it just gets worsE there. Look they r great surgeons but they diagnose badly. I've been given the run around before and then they were like oh there is a problem. Wish I could find another group but I guess it's all the same. 

Boys Mom , the Surgeon wanted a endoscope done to rule out gastric issues. Dr Brian did it and said oh I know what's wrong and then I had to wait 4 days for a gastric emptying study that came back normal. I know what's wrong and it's not GI Related. 

Dr. Jeff Milsom is a colorectal doc at Weill-Cornell.  He is not taking new patients and does not take ANY insurance.  I sought a 2nd opinion with Dr. Sonoda at WC and he was dismissive and a bit of a jerk.  I saw him in mid August with excruciating right belly pain and vomiting.  It was a Friday and he told me to go home and get an MRI done.  Less than three weeks later, I was in my local hospital with my colorectal doc of 17 years.  I spent 28 days, was diagnosed with Crohn's and spent 21/2 years on Remicade.  Don't let the "big name" and NYC fool you into thinking it's OZ!

 

Lisa,

Were you able to get off remicade after 2 1/2 years? My son had surgery at cornell. Cleveland Clinic thought Cornell left too much rectum, so he still has UC. He is on humira and methotextrate now ( and rifaximin). (Cornell doctors think more likely he has Crohns)

Thank you.

Ally Kat,

Perhaps you could try Michelassi at Cornell. He is not in the Milsom practice  and used to take insurance I believe. We do not have experience with him but I have heard good things about him. I think he travels a lot though.

I think Michelassi is in the practice. I saw his name listed with the others. 

I agree did not like Sonda. I did not know Milsom is not taking on new patients? Well he has been mine for a long long time but is impossible to see or get to do anything. On the website it says he us taking new patients. 

According to my colorectal doc. "even when Jeff (Dr. Milsom) is there, he isn't really there". He travels and attends world-wide academic meetings, etc.  I've heard Dr. Michalessi is great, but not young and is tapering back on his time.  

 

 

 

Lisa,

I am glad you are feeling well off remicade.  I would like to know how you got off biologics - did you taper off ( with risk of antibodies building up) or just go cold turkey? Did your pouch function change as you went off? Do you monitor your cal protectin? Thank you.

Morning

are you aware that as a patient you have the right to file a complaint with the Hospital Administration, the Joint Commission. Your Health Insurance, and most Importantly the State Dept of Health to your care you receive..Too many complaints they can not operate.All complaints are investigated.

I recently received a letter from my insurance company questioning the care I receive from my doctors.

I am also a New Yorker.  As far as Mount Sinai write to their CEO bet he love all the letters.

 

Cassie

My theory about surgeons is that I am there for the few hours that I am being operated on and that is the most important thing, the after care I can  go to the GI for most of that other stuff.  Obviously I'd like to have a great caring surgeon but if that's not the case then I'm good with it. 

 

Michelassi was my surgeon, he's a good guy and I'm very happy but if you need a lot of attention you're not going to get it from him because unfortunately he's way too busy because he is the Chief Surgeon for the Hospital.  It took me almost 2 months of waiting for my colectomy.

 

You've been to Mt Sinai and NYP Cornell; maybe you should go to the Cleveland Clinic and see Dr. Shen (if your insurance will cover it) just so you can say you went to the best J-pouch specialist and did everything that you could before you decide on having your pouch removed.  

Thanks everyone, the saga continues as I had a very bad weekend, every time I tried eating lots of pain and dry heaves. I tried to hold out but last night I could not get the dry heaves under control so now I sit in the ER waiting to be admitted again. Why my surgeon took off on a vacay the first week of née residents is beyond me. So I'm scheduled for exploraty next week! I think they plan on putting me on TPN till theN. I'm very scared of what they might or might not find. I'm worried about my quality of life. I was perfectly fine until 3 weeks ago. Tons of tests come back normal but I feel awful. all I want to do is sleep. My adrenal hormone from all the stress must be near zero. 

You guys are scaring the heck out of me.  We are just transferi g over to Cornell And there is no way I would put up with this crap.  That said, I dont know the powers that be over there like I do at Rober Wood Johnson in NJ..  Ally, I'm scared for you.  We are going to be over there tomorrow, let me know if I can do anything.  Jeff is meeting with Kelly, Dr. Bosworth ostomy nurse, then we are going for an MRI over on the east side.  But if you want be to blow a gasket for you, just let me know.  If I see Bosworth tomorrow, I'm going to say something regarding the rumors I'm hearing and that this better not be the norm over there.  I'm hoping it's because of the change of staff.  But I am truly worried about the care you are or are not receiving.  If I can help, let me know!  I have a big mouth!  A big Jersey girl mouth!  Seriously, I'm a nice person, but I can let my jersey mouth get me in trouble!  Please feel better.  

Dianne

Thanks Jeff Mom

now they sent in a fellow GI who told me there is nothing wrong with me and no surgeon will do a lap to see what's going on. I guess this is all in my head. He says I have a functional issue. How do I fix this? Have u tried this, yes and that, yes. Ok do you have this symptom, no and that, no. I was perfectly fine 3 weeks ago. Well nothing is wrong with you. The medical team are clueless as well, it's a process they tell me. Hello, I was there for over a week and it's still a process? In the meantime I only had liquids and am feeling better. So am I going to have to live on TPN? 

Yeah open your mouth Jersey girl. Good luck to you. I actually got yelled at by my GI for complaining last week that she never shows up. Same office. 

At least I think they hear me but don't hear me. You know the tests are prefect and don't show anything. Well, I have had many tests that never showed the damned problem.

believe me Mt Siani is a joke as well. 

 

 

 

Ally, how are you feeling?  We were in town yesterday.  Everything went fine.  I wanted to suggest Dr. Shukalar, or something like that.  He is our surgeon, takes our insurance and from what I understand is fairly hands on.  Might be another option for you.  I think part of what is going on is the time of year, at least I hope so.  This is why I didn't want to go to a large NY hospital.  Everyone was telling me too, and I wanted to stay put.  I wish we still could be at RWJ.  

 

I do do hope you are doing better.  And yes, they will do a pouch removal.  Just keep screaming.  I hope you have someone who can advocate for you as well.  I could send in my husband, he is a pit bull, LOL!  Hang in there.

 

 

Thanks Dr Shulka is actually go on vacay till the end of the month. I tried. But no Milsom himself wants to look inside.  I ask Dr Yuo today if she could and she said no, Dr Milsom wants me. How special I am loL. I am scheduled for next Thursday. 

Who goes away now when the new residents are starting. 

So the plan is to try and get me home. After drinking disgusting ensure they gave me a puréed dinner. Let's see if this gets me sick. I'm loading myself on Ativan to keep calm. I don't care, it a long wait to find out if something is wrong with you.

Im glad you had a good experience. Actually, this time I was assigned a really nice medical team who are actually listening. 

Why are they removing your sons pouch? I heard this is a very big surgery. When is he doing it? I pray for him. I'd remove this in a heartbeat but with my history of adhesions this might not solve my problem. And I'm not getting younger, recovery will be hard for me as well. I wish I never did this pouch.

So far they dont know if they are removing it yet. They ate going to try a repair but dr shurala is doubtful of it working. If it doesnt work then we will go to Dr Dietz in Cleveland. personally, i think its more trouble than its worth .  But jeff wants to try. I dont know. I hope u begin to feel better soon. You've been through a lot. Hang in there.

Why would you go to CC for removal rather than do it here in NY.

We are not at the point of removal yet.  I would go to CC only if Dr. Can't repair it and see if Deitz or the other fix it guy can fix it.  

Might be worth doing the surgery at CCF honestly or going to either Drs. Milsom or Michelassi who are the most experienced surgeons at Cornell. Pouch removal is serious surgery and you need to go with the absolute best. CCF claims that my surgeon did not take enough out; they use different techniques and it might be worth getting another opinion on pouch removal from in Cleveland or Mayo.

I agree with others about NYP and their treatment of patients. The Jill Roberts Center doctors seem to not have time for their patients and it has only gotten worse over the years. Either they need to hire more doctors or they need to stop accepting new patients. Office waits are 2+ hours for me and once while in the hospital, it took my GI 10 days to come by (he was on vacation the first 5 days and the rest I had to keep bugging his staff to make sure he came to see me, which he finally did to discharge me). World-class hospitals need to step up their game. This would never happen at CCF or Mayo no matter how busy they are!

They now have 6 Drs on staff but I still don't see a difference. And the same for colon rectal. Still a mess. I'm seduled for a exploratory with Milsom on Thrs day but I can't even get an appt to speak with him. I have no idea what he plans on doing and now the GI just through a loop at me. She thinks part of my problem is the chronic pouchitis and maybe he should do an ostomy While in there. He is looking for adhesions, but that will not solve the pouch. The surgeon does not think the pouch is the problem although I have chronic pouchitis that is not responding anymore. He does not take care of me like the GI. What a fine mess! I hope the GI can speak with him before than. 

AllyKat, is your GI Dr. Scherl? Have you tried biologics to control your pouchitis?

 

Ask your nurse to see Dr. Milsom before the procedure in Same Day Surgery and if he doesn't come to see you then, ask the nurses and anesthesiologist in the OR not to put you to sleep until you speak to Dr. Milsom about the procedure and what course of action he will take.

 

Yes she is my Doctor. I'm seeing a new Dr in her office today for a second opinion on the situation. I hope they can advocate for me And talk to him before Thursday.  She was not happy that I can't get to see him first. He has been on vacay When they booked this while I was in the hospital Thinking at first it's adhesions but now I've been thrown this loop. I'm really sick, can't even eat, in pain, nauseau, etc  etc etc. Came on fast. No I don't have CD And I'm scared. Dr M does not even think this is pouch although biopies mild moderate chronic pouchitis not responding to meds anymore but he has not been following me all these years. Yes I tried Remicade but had a bad reaction to it. Now I can't even try another cause I had melanoma in the past. 

 

 

Ugg these new young Drs. Another one tells me it's a functional issue and need to go on antitripalye and won't advise surgery. But I already take a antidepressant and Ativan and it does not make a difference. I started crying and wanted till my GI came in and she was like we like to try everything first before suggesting surgery but it was up to me. Her hands are tied. Then I went to see the surgical fellow and I'm still on for Thursday but they need to figure out if what the problem is, is it the pouch, is it adhesions, what??? They don't want to do surgery twise. This is scary, I am so scared right now. I'm down over ten pounds and can't eat or I get sick. 

I have no problems with my GI doc at the Jill Roberts Center.  Last time I went there they got me in 15 minutes earlier than my appointment was scheduled for. Sometimes I have to wait 10-20 minutes but he spends as much time as I need with him, I never feel rushed.  I can usually get an appointment with 3-4 days.  Also he would stop in my room most days after my surgeries to check on me.

 

My surgeon only had office hours twice a week, either a morning or afternoon so there was limited spots available and it would take me a long time to get in. I would also have to wait about an hour in the waiting room.  

 

I use to go to Mt Sinai and I like NYP Cornell much better.