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jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 11/25/2007 5:55 PM (GMT -7)   
thanks all for the answers to my questions.
i live on long island and would like to find the best dr possible for my 19 year old daughter. this is so complicated and we need someone who understands and has the most experience. i don't know if you can make recommendations on this board, but if you can i'm open to suggestions. new york city long island, or wherever the most experience comes from ? thany you

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 11/25/2007 7:39 PM (GMT -7)   
For NYC -- the best place for UC research and doctors is Mt. Sinai hospital.

There is a group of Mt. Sinai-associated doctors who have a practice on the Upper East Side. Dr. Daniel Present is one of them and he has an amazing reputation. Dr. Present is on the cutting edge of UC research, so you can't go wrong with him in terms of treatment. However, I somehow didn't have a good connection with him. This was about 7 years ago -- I didn't like the vibe in the office. Also, they do not take insurance in his office and they yelled after me if I forgot to pay and tried to leave. Maybe it was because I was so sick that I just didn't like the feeling there. Certainly if you go with your daughter she'll have a better experience than I did when I went alone and felt so bad. I felt that Dr. Present was helpful but I find my current doctor in Connecticut is more easy for me to work with.

Someone here posted about Dr. Ellen Scherl. She also has a great rep. Maybe someone here will know about her bedside manner.
I found this link to her bio:
http://www.cornellphysicians.com/ejscherl/biography.html

I just checked the Mt. Sinai website and looking at the list of faculty, I remembered that I'd seen one other doctor from there. Dr. Charles Gerson. He has an office on the Upper West Side. I liked him a lot but he never treated me since it was just a consultation. I believe that he is also excellent. And that office is very nice and friendly. His daughter is a psychologist who runs hypnotherapy classes for people with Irritible Bowel Syndrome. (The class is AMAZING, by the way. Great for learning relaxation techniques.)

Gerson's wife (also Dr. Gerson) is also a GI specialist. I don't know anything about her except that she's also on staff at Mt. Sinai.

I think that finding someone your daughter feels she can "work with" is really important. She's lucky to have such a proactive and supportive parent. I'm sure you will find the right doctor for her. :)
-------
UC for the last ten years
Current Meds: 6MP
Past Meds: You name it; I've tried it.

Post Edited (julee70) : 11/25/2007 7:52:48 PM (GMT-7)


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 382
   Posted 11/26/2007 5:32 AM (GMT -7)   
thank you for taking the time to look at the sinia web site. i heard the name dr sherl but couldn't find her in a search. i will go to the link you gave her. my daughter is hoping this will end as fast as it came, i don't want to crush her with too much information, i will just be ready for the next step as she is losing weight before our eyes. i need to be ready her semester ends in 3 weeks and hopefully she'll make it till then on just the asacol, which she just began.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 11/26/2007 5:55 AM (GMT -7)   
Please, I think we all spend some amount of time using denial to help ourselves adjust to our changed state. So if it helps any, her reaction is completely normal. I hope you and your daughter find a doctor who is both expert and supportive.
Judy
 
Moderate to severe left-sided UC diagnosed 2001.
 
Current meds are Colazal, Azathioprine and Remicade. Completely off steroids for more than a year now! In remission since April, 2006. Remicade has been my wonder drug.
 
Now tapering Azathioprine, please pray for me.
 
"If you spend your time second-guessing your past decisions, you'll never have time to enjoy today."


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 11/26/2007 8:20 AM (GMT -7)   
Mt. Sinai is the place to go in NYC for IBD treatment. Cornell is a lot of hype. We did a thread on Mt. Sinai last spring where several members here posted. The doctors affiliated there whose names came up, in addition to Daniel Present, were Steinlauf, Kornbluth, Agus, & Legnani as I recall, + M. Abreu who is returning to Florida. Unfortunately, the IBD doctors in Manhattan generally do not participate in any insurance plans, especially the ones who are most experienced : not very humane of them! Good luck with finding a new GI for your daughter. Does the Asacol seem to help her condition? / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 Colazal daily; seem to be back in remission)

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2198
   Posted 11/26/2007 8:25 AM (GMT -7)   
I'd recommend Dr. Ronald Hoffman of the Hoffman Medical Center. I'm considering traveling across country to see him. You can read more about him and the clinic here:

http://www.drhoffman.com/

And there are some excellent articles on IBD on the site, too. You're very fortunate to live in the NYC area. I've been through several gastos docs where I live and they're all standard drugs and surgery. No one here can intelligently discuss probiotics, omega-3 supplementation, dietary changes or any complementary therapies.


Diagnosed with ulcerative colitis spring 1999
 
Therapeutic dose sulfasalazine, back on a pred taper for first flare in years. Down to 10 mg and feeling much better.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice and Mucosaheal.
 
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 11/26/2007 8:47 AM (GMT -7)   
Whoops! I just read another of your threads, PLEASE, where you write that your daughter is supposed to be taking Asacol & Rowasa for left-sided UC. That sounds good to me-- just be aware that they can take 2 months or longer to eliminate symptoms. Your daughter should also be taking a good vitamin/mineral supplement. It's important to keep up intake of folic acid, calcium, & vitamin D + have bloods checked to be sure she's not anemic, etc. during UC flare. She should also rest as much as possible to help heal the inflamed tissue-- hard with finals coming up, I know! / Old Hat

MommaD
New Member


Date Joined Nov 2007
Total Posts : 8
   Posted 11/26/2007 9:43 PM (GMT -7)   
So sorry you are going through this with your daughter. We had a very good experience with Dr. M. Abreu at Mt Sinai. She is very smart, cutting edge research. Only problem is she is very busy and hard to keep her from running from one patient to another. Another thought if you can afford to do so is to take your daughter to the Mayo Clinic in Rochester, MN. We just did that and were so impressed with Dr. Ed. Loftus. We have seen 12 different docs and he took over one hour just going through everything, doing tests no one else. Well worth the flight and trip. He was great. We still call him to get input.
Good luck and hope things go better
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