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NY metro area GI Dr. Recommendation and flare advise

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Ulcerative Colitis
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Posted 4/25/2014 9:46 PM (GMT 0)
Hi-I am new to this forum but unfortunately not new to colitis. I was first Diagnosed with Ulcerative Colitis in 2006 and have been seeing a local Dr since then. My UC has been pretty well controlled over the past few years by taking maintenance dose of various mesalamine drugs (first colazal and now on Apriso) with flare ups occurring mainly only postpartum ( I had two children since diagnosed). Previous flares got back under control by increasing the dose of mesalamine. I have been flaring now for the past 2 months which I think was initially triggered by antibiotics for strep infection. My Dr. increased my meds from 8 pills of Apriso to 10 pills and I also started canasa suppository but I'm not seeing any improvement. My Dr. is resisting putting me on Prednisone even though I asked for it she says "it's not a quick fix". I want to see another Dr for a second opinion. Has anyone else experienced a Dr's refusal to prescribe pred? Can anyone recommend an understanding and competent GI Dr. in the New york metro area? I live in Rockland County NY but would travel to NJ or westchester or even Manhattan for the right Dr. Thanks in Advance.
Posted 4/25/2014 11:43 PM (GMT 0)
Im from Westchester and i have been going to Cornell in the city for about 5 years now. They are amazing down there. here is the doc I go to. there are a few more within the practice as well. I HIGHLY recommend her. Easy to get to as well. right in yorkville on the upper east side. I hope this helps. PM me if you have any questions.

As far as the refusal to give you prednisone, i have never heard of that before. unless its contraindicates something else. I was on it a few times YEARS ago before i started the remicade. Most docs know that its only a band-aid and its really not good to be on for long periods of time. Still if you are in a flare im surprised you got denied.

http://weillcornell.org/vjacob/

http://weillcornell.org/practice/ibdcenter/index.html

Post Edited (LMFD296) : 4/25/2014 5:48:29 PM (GMT-6)

Posted 4/26/2014 1:21 AM (GMT 0)
I go to the same practice. I've seen most of the doctors at least once or twice, they are great!
Posted 4/26/2014 3:35 AM (GMT 0)
no kidding. we should all make our appt's the same day and meet haha
Posted 4/27/2014 12:47 PM (GMT 0)
Thanks so much-I'll look into that practice!
Posted 4/28/2014 5:33 PM (GMT 0)
I go to the same GI practice. My GI recently moved there from Mount Sinai. I really like the facilities at NYP Cornell, they are very modern and comfortable.

My GI is Dr. Adam Steinlauf, I've been going to him for 8+ years. I have a lot of respect for him and he is very compassionate and understanding to his patients. Dr. Steinlauf does an excellent job explaining everything to his patients. He is not a big fan of predisone. There are a lot of side-effects from Predisone, short term and long term, sometimes it is really difficult to get off of Pred.
Posted 4/28/2014 6:35 PM (GMT 0)
thanks ks1905!  Interesting to hear of other drs not eager to prescribe pred.  It just seems that when I read through various forums on this site and members list their current meds so many pple are on pred.  I'm currently on Apriso 10 pills but I actually sometimes think it makes me worse.  I always need the bathroom way more often right after taking it.  Just curious if you or anyone else out there has experienced Apriso or other drugs working while in remission but making symptoms worse during a flare.
Posted 4/28/2014 6:52 PM (GMT 0)
Yes, in some people 5ASAs can cause diarrhea which I think Apriso is a 5ASA. I've only taken Asacal and it made my liver enzymes out of whack so I discontinued it.

There are other options than Predisone, I'm not saying that Predisone isn't best for you but I can understand why some GIs are hesitant to prescribe it. Dr. Steinlauf will prescribe it but he doesn't prescribe it a lot. I'm actually more comfortable with a GI that is conservative with Predisone because there are so many short and long term side-effects.

Maybe you might be better off with an steroid enema if your UC is mostly in the rectal area, it has fewer side-effects.
Posted 4/28/2014 8:55 PM (GMT 0)
hi, RocklandMom

My parents live in Rockland County and I've been going to Dr. Goldenberg in Pomona with Digestive Disease Associates of Rockland: http://www.myddar.com/

He's been a great doctor and his staff is very helpful and understanding. I can't recommend him enough to you, especially because you live in the county.
Posted 4/28/2014 9:12 PM (GMT 0)
If Westchester is better for you, try Dr. Marvin Chinitz in Mount Kisco. He is excellent.
Posted 4/30/2014 4:02 PM (GMT 0)
Thanks sfc425. Dr. Goldenberg is right down the road from my current GI. If you recommend him I'll give him a try before going to the city to cornell. It's so much more convenient and with frequent need for the bathroom it's hard to travel far.
Posted 4/30/2014 4:58 PM (GMT 0)
When I would go to NYC it was an uncomfortably long drive for me (anything over 10 minutes with a flare was), my GI would tell me it's ok to take Imodium for something like this. He really didn't want me taking it for extended periods of time but for something like a trip for an office visit it was good to take.

I always think a second opinion is good, especially when your health changes for the unfortunate worse.
Posted 4/30/2014 6:40 PM (GMT 0)
same thing, except with me it was Tylenol 3. I really looked forward to GI appointments for that reason...
Posted 4/30/2014 8:10 PM (GMT 0)
I made an appointment with Dr. Steinlauf for next week. Pray for me that I make it to his office still in clean undies-lol! (I love that I have a forum to joke about that and not be embarrassed and with people who understand) thanks guys!
Posted 4/30/2014 8:50 PM (GMT 0)
I think that you will like Dr. Steinlauf, he is extremely knowledgeable about IBDs and explains everything very clearly.

The first time I meet Dr. Steinlauf was after I transferred to Mount Sinai from my local hospital on a Sunday evening, I was really sick and lost over 50lbs with my first flare. The nurses got me settled in and said that the GI would visit me in the morning. But about 10:30PM Dr Steinlauf walks into my room and sits down on the edge of my bed and explains all my options for treatment. He spent about 2 hours with me. He had me hooked up to my new medicine by about 2AM and on my way to recovery.

Before he left I told him that the nurses said that you'd be in in the morning to see me for the first time, why did you come in Sunday Night at 10:30PM? He said that he wouldn't have been able to sleep if he didn't see me that night.

I never thought of finding another GI after that. Back then when he was at Mount Sinai he didn't accept insurance so I always had to pay out of pocket to see him at his office....I always thought of it as a good investment.
Posted 5/1/2014 5:20 AM (GMT 0)
I live in Westchester and my GI is Dr. Marlene Galizi in Hartsdale. Have only praise for her and her staff.

Have Bentyl handy all the time.
Posted 6/13/2014 7:10 PM (GMT 0)
Rockland Mom, any updates on how the appointment went? I was thinking of seeing him based on all the praise here.
Posted 6/13/2014 7:38 PM (GMT 0)
billk78- I have seen Dr. Steinlauf twice so far.... I am happy with him. I wasn't sure what to expect going to a big city Dr vs a local but my experience with Dr. Steinlauf was so much better. At my local gi practice I often waited 45 minutes to be seen and then rushed through an appointment. By Dr. Steinlauf both visits I was taken in immediately. I was seen first by a technician for vitals, then by the nurse practitioner, but when Dr. Steinlauf came in he still spent a lot of time with me, discussing and explaining different treatment options and answering my questions. I did not feel like he was rushing at all. He was knowledgeable and seemed concerned with helping me get better.

That being said- I did not start prednisone initially after the first visit. I started first on cortifoam, then added Uceris both of which did nothing. Finally after that I started 40mg pred for 1 week, then upped to 50mg pred for the past two weeks and have finally had significant improvement of symptoms over the past week.
I'm supposed to start tapering next week and they were going to start me on 6mp to keep me in remission but I was hesitant and Dr. Steinlauf agreed to my request to switch from Apriso back to Colozal which had worked better for me in the past to see if that's enough to hold me as I taper pred. If it doesn't work I'll have to go on 6mp. I was happy that Dr. Steinlauf was open to that and didn't try to push the 6mp immediately.
Hope this helps- Good Luck to you and I hope you feel good!
Posted 6/13/2014 8:24 PM (GMT 0)
Rockland Mom,

I kind of felt the same way about 6-mp and I was very hesitant at first. At his old office he took me over and showed me photos on a wall of about 100 infants who's mothers were on 6-mp while they were pregnant. The photos were of mothers that his old practice was studying (he was part of it) while they were pregnant and were on 6-mp; all of the children were born healthy. It did convince me to start 6-mp, he was telling me for a while that it was very safe but the photos really helped me.

Dr. Steinlauf does spend a lot of time with his patients, sometimes after like 15-20 minutes I'm like I gotta get going before I hit traffic on the way home. But he's great, he will spend a lot of time with his patients...some times he asks me if I understand what he said and if I don't completely understand it he has no problem explaining it again to me. I never feel rushed during my consults with him.
Posted 6/13/2014 8:32 PM (GMT 0)
Rockland Mom,

I'm glad that you are feeling better but the sooner you get off the predisone the better, there are so many side-effects with that drug. 6-MP does take some time to build up in your body and start working. It took me 2-3 months before it kicked in but it was like a light-switch went on and I was in remission. I had to tweak the dosages with Dr. Steinlauf's help but it did last for a good 2-3 years without any side-effects except for some occasional tiredness.

I really never had any luck with the 5-ASAs like Apriso or Asacol. But I hope that the switch back to Colozal works for you but if it doesn't then 6-mp is a very safe drug with lots of clinical studies to back it up. Plus we take it at such low doses that any of the negative reported effects are usually in the really high doses used for organ transplant patients.
Posted 6/15/2014 3:52 AM (GMT 0)
ks1905- that's reassuring to hear about your positive experience on 6mp. For now I'm hoping the colozal works but if not I'm glad to hear the 6mp is not a bad option.
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