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Crohn's help in New York-Post It

Hello everyone this is Nicole's husband, Marlon.
Firstly, I wish thank everyone for all the support and encouragement Nicole has been receiving here. In the short time that she has been on the forum her outlook on her diagnosis has been positive and much easier for her to deal with. I see a more relaxed and optimistic wife and best friend.

Lately, I have been concerned about her condition. She is still bleeding heavily due to kidney and intestinal infections and in severe abdominal pain. The Pred and Sulpha aren't doing the trick and we are not confident in our present GI. We are in the process of changing him but there are only about 4 in the country.

I heard about a clinic in New York that specializes in Crohn's. Can anyone give any information about it? As well as any information on any other medical facility that may be beneficial to her within the New York area or environs.

We're planning a trip to NYC, possibly in May as she now has to quit her career in Export Marketing due to extremely stressful demands. Of course this means discontinued medical benefits. I really want to give her all the support and find the best help for her.

So if anyone here knows of any group or organization or anything at all including the process one may need to go through prior to receiving health care or medication that can help then please advise.

Thanks again for taking the time to read this.
Marlon
 
Hi Marlon.

From what you're saying it does sound like Nicole might benefit from seeing someone who specializes in Crohn's, at least for a consult. I'm sure there are good people in NYC but I live in Philadelphia, less than 2 hrs south. We have several fabulous doctors in the inflammatory bowel diseases program at The Hospital of the University of Pennsylvania. Dr. Gary Lichtenstein is world famous, but Mark Osterman is also really good as are James Lewis and Fatten Aberra. Here's the link in case you decide to call them:
http://www.pennmedicine.org/gi/services/ibd.html

Good luck!
 
I have seen a great doctor at Emory University (known for its medical excellence) here in Atlanta who is very good as well. I mention this because I know Atlanta is an easy destination for people outside the US... Let me know and I can get you her contact information.

I will also ask my brother, who is an ER doctor in NYC, if he knows of any good GI doctors or clinics up there. Will report back soon.
 
slice said:
Hi Marlon.

From what you're saying it does sound like Nicole might benefit from seeing someone who specializes in Crohn's, at least for a consult. I'm sure there are good people in NYC but I live in Philadelphia, less than 2 hrs south. We have several fabulous doctors in the inflammatory bowel diseases program at The Hospital of the University of Pennsylvania. Dr. Gary Lichtenstein is world famous, but Mark Osterman is also really good as are James Lewis and Fatten Aberra. Here's the link in case you decide to call them:
http://www.pennmedicine.org/gi/services/ibd.html

Good luck!
Hi Slice thanks for the info and the site will check it out. We've been to Philly and it's a great place. Wouldn't mind seeing it again.
 
alexandros8 said:
I have seen a great doctor at Emory University (known for its medical excellence) here in Atlanta who is very good as well. I mention this because I know Atlanta is an easy destination for people outside the US... Let me know and I can get you her contact information.

I will also ask my brother, who is an ER doctor in NYC, if he knows of any good GI doctors or clinics up there. Will report back soon.
Thank you Alex, I appreciate your response. I await your brother's NYC information. Atlanta could also be a possibility.

I heard you had surgery, hope you're feeling better.

Marlon
 
I live in New York and there are a lot of hospitals here. There is one they call the "Mecca of Crohns" Mount Sanai. Some people like it but I perfer not to go there. I had my surgeries there and perfer going to a doctor who is affiliated with a different hospital on Long Island NY. I feel more comfortable with my doctor that I currently go to for a few years now. Some people have great experiences with mount sanai, I personally did not ( More than a few times). The number one hospital in the US for crohns my doctor states is the Mayo Clinic in Rochester MN. He even gave me a few names over there for some doctors that he knows incase I want make a trip out there for more options for my treatment. If you have any specific ? that I can possibly answer for you feel free to ask or PM, I would be more than happy to help you :)
 
I go to medical school in NYC and have been looking for a new doctor. I have been told by a few separate doctors that Dr. Asher Kornbluth, affiliated with Mt. Sinai, is known for treating Crohn's patients. I haven't been able to see him though because he doesn't take insurance. But if you are coming from outside of the U.S. I guess it wouldn't make a difference for you.
 

Astra

Moderator
Hi Marlon

I can't help you because I live in the UK
but wanted to say a big hello and to say that Nicole is very lucky to have your support and love
this disease is hard enough as it is without someone to support you, and many people are flying solo, so well done Marlon xxxx
 
Jennjenn said:
There is one they call the "Mecca of Crohns" Mount Sanai.
Hi Jenn, because we'll be staying at relatives when we visit NY we need somewhere that's easily accessible via metro or bus, so Mt. Sanai maybe our best bet. Can you tell me or inquire for me what the procedure is regarding a consultation there. I need to know what steps need to be taken and whom to contact regarding those steps. Please also inquire about the avg cost.

Jennjenn said:
The number one hospital in the US for crohns my doctor states is the Mayo Clinic in Rochester MN. I want make a trip out there for more options for my treatment.
I wish to explore all options and she has mentioned the Mayo Clinic before, so making a trip out there may also be a good idea.

Jennjenn said:
If you have any specific ? that I can possibly answer for you feel free to ask or PM, I would be more than happy to help you :)
Nicole will logon later on tonight and I'm sure she'll contact you.
Thnx again Jenn.
 
borborygmi said:
I go to medical school in NYC and have been looking for a new doctor. I have been told by a few separate doctors that Dr. Asher Kornbluth, affiliated with Mt. Sinai, is known for treating Crohn's patients.
We'll be going to Mt. Sinai so I'll check out Dr. Asher Kornbluth, Thnx Borborygmi
 
Astra101 said:
Hi Marlon
I can't help you because I live in the UK but wanted to say a big hello and to say that Nicole is very lucky to have your support and love this disease is hard enough as it is without someone to support you, and many people are flying solo, so well done Marlon xxxx
Hi Astra, I beg to differ on two accounts:
(1) You have already helped. By just replying to this post shows us you care and as we all know, this disease needs lots of love (as cliché as that sounds).
(and 2) I think I'm the lucky one. She has been my best friend for 8yrs. and my wife for only 1. So we've just started our journey together and we intend it to be a very long journey... come what may.

Nicole's strength dwarfs my own and sometimes I don't know how she does it. She doesn't now this, but my favorite song has become Whitney Houston's "I didn't know my own strength" because everytime I hear it I think of her and the things she's been through in her life and I know this is just another stumbling block that she will conquer... it's just a matter of time.

So Astra, keep the help coming and we'll pass it on to everyone else who needs the support and I'm sure it'll all come back to you when you need it most. That's the way God works.
 

Astra

Moderator
Hi Marlon & Nicole

so good to see you in a photo, you are both gorgeous! and you are both lucky!

yes, it is wonderful to have love and support, I didn't, unfortunately, for many years with my partner of 28 years, and there's a reason he didn't make it into my future.
but God does move in mysterious ways, and now I have found a new love, and we are embarking on a new journey, with his problems and my problems, we will conquer it together,
Me & Mark against the world!
love as always
Joan
xxx
 
Aww this brought me to tears, you are incredible for standing by her during her hard times. I hope that your trip to NY goes good and that she gets some help and answers so she can start feeling better soon!
I am currently living in upstate NY and see a doctor in Syracuse, I would give you their info but it's about 4 hours away from NYC and I'm sure you don't want to have to travel that far! If it turns out you'd like it, just let me know, I'll gladly share :)
Good luck in your travels!!
 
borborygmi said:
I go to medical school in NYC and have been looking for a new doctor. I have been told by a few separate doctors that Dr. Asher Kornbluth, affiliated with Mt. Sinai, is known for treating Crohn's patients. I haven't been able to see him though because he doesn't take insurance. But if you are coming from outside of the U.S. I guess it wouldn't make a difference for you.
I was also referred to see Dr Kornbluth. It is always upsetting when a doctor that is supposed to be so good in treating a condition, does not accept insurance. I was not able to go to him as well for this reason. If you are going to Mount Sanai he is supposed to be a great doctor if you are able to afford him. One of my professors told me also the other week that he goes to a Dr Present who is affiliated with Mount Sanai hospital also. I have not made an appointment with this doctor because my GI referred me to the head of the Gastro at a Hospital in Queens NY. I am going to have a Double Balloon Enteroscopy there probably next week. I meet with him tomorrow.
 
Hi Jenn,

Thanks for all the information. As Marlon mentioned, I plan on visiting the US end of April for two weeks. I hope that I'll be able to get some help within that period. Of course I have no idea of the procedures and processes regards medical in the USA. I don't even have a clue of what kind of cost I'm going to be faced with.

Seems to me that we're all experiencing or have experienced inadequate and deplorable care from our GIs. It's really disheartening when faced with this predicament and unable to find some kind of resolve. I suppose we'll just have to keep plugging away. I'm happy we all have each other.

Let me know how things go tomorrow.
All the best, Jenn.
 
Hi Nic,

Thanks so much for sharing. Marlon's my hero.

I don't think I would mind the four hour journey at all. We'll use it as an opportunity to site see and if I get positive results, it will be worth the trip.

Thanks again.
 
Hi Marlon and Nicole!!! I would just like to tell Marlon it really is awesome he has taken his vows seriously and is willing to stand by you thru. It is a very difficult disease, with times that are bad but also times that are good so enjoy them as they come! One place I would suggest, even though I am in Florida not NYC, is the Mayo Clinic in Jacksonville, Fl. I saw Dr. Cangemi there last year and he was great. While there I spoke with people from all over who were flying in just to come see him. Also, Mayo Clinic is great as they do work with you in payments and really care about getting the patients help first. Good Luck to you both!!!!:sun:
 

Crohn's 35

Inactive Account
Nicole and Marlon... I am Canadian and cant help with NY, but I just wanted to welcome you both and admire Marlon for stand by you Nicole. I too have the most wonderful husband and is there for me thick and thin. I forget sometimes even though we are sick, what our spouses go through too. It is hard to see the one you love in pain or suffering. Bless you Marlon! Great lookin couple ;). Keep us updated ok? Good luck on your journey Nicole!
 
Hi Nicole and Marlon,

Just to follow up with you- my brother has also said that Mt. Sanai is the area's prominent GI center. He did not have any names though.

Good luck with everything!!

Alex
 
Hi guys thanks for all the support and wonderful encouraging comments. Nick's not feeling very well today so she is resting but I know she'll want me to express gratitude for all the kindness we've received here.

She'll be up and around by tomorrow, hopefully, and back online.

Alex: We'll definitely be hitting Mt. Sanai. Thnx for the follow up, it's greatly appreicated.

Jettalady: It's always nice to meet a Canadian, my Mom lives in B.C. Abbotsford so Nick and I met alot of very friendly people there. We've only visited once but we love it and we're hoping to migrate from Trinidad to there in the next 5 yrs.
You're right about spouses going through alot and that's why I can only imagine what Nicole experiences everyday. I know if the situation was reversed Nicole would do the same and more for me.

pcbgirl227: Vows? there were vows?... just kidding. The happiest day of my life was when I married Nicole, so when you have a good woman at your side it's easy to keep them vows. Thnx
We're also checking out Mayo but the one closes to NY as that where most of my family reside. (and we have a place to stay)
Thnx for the support.

God bless
Marlon
 
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The top doctors at Mount Sinai is Doctor Kornbluth and Dr Present. They both don't take insurance. Dr. Present runs around the country talking about Crohn's. They many associates who they work with at Mount Sinai with who do take insurance and are fine doctors.
 
Hi,
I just had an appt with Dr Present and a chromoendoscopy with his partner, Dr Marion in NYC. I have a local GI doc in NJ, but as my case was getting complicated, a co worker recommended Dr Present. My first appt was last Oct, and as a long 1st appt, it was expensive. But, I was surprised when my insurance, United Healthcare paid for 90% of it. The office makes you pay in full after the appt and you must send in the paperwork yourself. For this recent appt and chromoendoscopy, I just sent in the paperwork and it is not processed yet. Everyone's insurance is different, but I was pretty pleased with mine.
- Joe
 
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