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GI Doctor recommended a Dr in Mt Sinai

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Crohn's Disease
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Posted 3/14/2016 2:13 PM (GMT 0)
Failed Remicade, Humira, and possible Entyvio. My GI want me to see a Dr @ Mt. Sinai (http://www.mountsinai.org/profiles/thomas-a-ullman) I'm assuming that's not good when your GI refers you to see someone else for a second opinion. Felt my best on Remicade but built antibodies, felt my worse on Humira, not feeling so well on Entyvio. Scared, don't know what to expect. Has anyone had experience with this Dr. from NYC.
Posted 3/14/2016 3:48 PM (GMT 0)
I use to go to Mt Sinai; I always had a problem with insurance there. I think that is a common complaint about Mt Sinai, many of the GIs do not accept insurance or at least that use to be the issue when I went there.

My GI moved from Mt Sinai to NYP Cornell, he now accepts insurance.

There are some really good GI at NYP Cornell. I was there on Friday for my 1st Stelara injection.

I had a similar experience with Remicade; Humira for me sucked, so did Simponi, Cimzia didn't work and I just switched to Stelara; which has only been 3 days and it seems to be working.
Posted 3/15/2016 1:07 AM (GMT 0)
My doctor is heading in the direction of referring me out of state (4 hours) to Standford. Same reason, failing everything. I agree, it scares me to when they go there and don't know what else to do with us. Maybe they are thinking clinical trials? I've been on Remicade for a year now, was doing great, but it's all coming back now. I've also tried Humira and Cimzia, not really having a lot of faith in any other biologics working when you fail 3.
Posted 3/15/2016 9:55 AM (GMT 0)
It really is kind of scary to think that a specialist is recommending you to another specialist. He did mention that going to a bigger scale facility that you might be able to get in a clinical trial. I'm so confused and I don't know what is normal anymore. Scared to see this Doc and blast him with all fail stories. Don't know if I should be feeling this way on these types of drugs.... I mean is it normal to have blood in your stool while on Entyvio, is it normal to have 10+ bowel movements a day, is it normal not to have a social life always worrying about having to use the bathroom and scouting out the nearest bathroom locations. Is this all normal while being treated for crohns. Just venting..............
Posted 3/15/2016 3:00 PM (GMT 0)
Fig,

I'm sure they hear this stuff all the time. I know that my specialist in NYC hears it from me.

I had my j-pouch surgery a couple of years ago for UC and I was hoping not to take meds anymore (but my colon needed to go). Anyway, long story short, I've had chronic pouchitis from day-1; now possible crohns.

I've done all the antibiotics, and was on Cimzia previously but it wasn't working so I needed to change. I didn't want Entyvio because it took too long to work and may not be as effective for CD than UC. I asked for Stelara instead, it took some fighting with my insurance company but he got it approved for off-label use. I had my first Stelara shot of Friday and I'm in remission 4 days later.
Posted 3/16/2016 1:59 AM (GMT 0)
Depending in on the condition of course, mt. sinai has some of the best gi's in the world. An immediate family member just had surgery on illeastomy site that had become blocked w/ scar tissue. Based on credible first hand and referral agencies' recommendations, we chose mt sinai over the Cleveland clinic for the operation. Again, it probably depends on who you see and for what, but my impression is that, overall, they have one of the best gi centers in the world.
Good luck!
Posted 3/16/2016 3:38 PM (GMT 0)
Well today's the day I trek over to the city. X'ing my fingers.
Posted 3/16/2016 11:30 PM (GMT 0)
Fingers crossed for you! Please let us know how it goes.
Posted 3/18/2016 11:11 PM (GMT 0)
Dr. wants me to take Cimzia. Failed Remi, Humira, and Entyvio. Testing blood to see if 6mp is working or not. Waiting on those results.
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