Anyone had surgery at Mount Sinai?

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Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/16/2008 5:31 PM (GMT -6)   
After talking to my doctor today, he thinks that one day i'll need to have surgery as I have a pretty nasty case of colitis and my flares have been very severe.   We are hoping to get this under control with a higher dosage of 6mp.  I am also taking prednisone now for the third time.  He said that I cannot be on steroids for a long time, and if i become steroid dependent then I could go the surgery route or the remicade route.  I'm really rather done with drugs as of this point, so I'll likely elect surgery.
 
That being said, I live in NJ and Mount Sinai of NY has a good reputation around from what I've heard.  I would like to know if anyone from here has had experience with that hospital?  Good/bad, etc?  Let me know of your experience please!! :)
 
 
Thanks,
Vin
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/16/2008 8:45 PM (GMT -6)   
Vin,

I'm really sorry you're having flare up's and are having to take high doses of prednisone. I've been there, so I understand what you're going through. There's a new guy on here named JrNYC who's going to have surgery at Mt. Sinai on Tuesday. Hopefully, he will see this post, and you two can connect.

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)


JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 10/17/2008 8:54 AM (GMT -6)   
Hi Vin, my surgeon at Mt. Sinai is Dr. Heimann. He is an amazing human being. I saw other surgeons and they kinda made me feel like just another patient. But with Dr. Heimann it was the complete opposite. He was one of the first to do this surgery and he takes many insurance plans, you can find out online if he takes yours. His staff was very comforting as well, and all phone calls have been handled with total compassion. Im not going to lie I am very nervous but when I talk to them they make me feel better. This is a surgery that they do there often so the entire staff is well trained. I dont know if this helps. I guess I will know a lot more next week...lol. Any questions that you have I will be more than happy to help.
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.
http://www.myspace.com/kendawg74


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/17/2008 11:18 AM (GMT -6)   
Jr,

That helps alot. Please keep me posted about your experience. I know its probably nerve racking.

For the surgery, did you have to be evaluated first to see if you can have the surgery or should have the surgery? Or did you just call Dr. Heimann and say, I want the surgery!! CUT THIS SUCKER OUT! I've been suffering a long time with UC(not as many as others, but i just don't think i can take much more of it). Even if the drugs do get me in remission, i feel its just a matter of time before i need to get the surgery through either an emergency, or some other piont where it would be less convenient then if i was a healthy and in remission. And I hate to have to worry every fall/winter if its going to come back or not. Each flare has been tramatizing.

Vin
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


JrNYC
Regular Member


Date Joined Mar 2006
Total Posts : 66
   Posted 10/17/2008 12:00 PM (GMT -6)   
I had UC for 10 years. I have actually been feeling kinda ok but by no means great. In june I was diagnosed with LGD. Got a second opinion and they found more. The risk of developing cancer went way up for me and my only choice is to remove my colon. So this decision was made for me. If I wasnt diagnosed with LGD I wouldnt be getting the surgery because I was able to function. Just needed a bathroom everywhere I went...lol.
I miss the waves... I miss the trails... I miss the snowy mountains and the rock walls I used to scale... I miss being on stage and escaping from reality... I miss feeling healthy... I miss feeling sane. I pray every day for one day out of seven just to feel invincible. That day will come. Thank you all for being here... in this small corner of the internet universe, you've been so much help... hope i've been the same.
http://www.myspace.com/kendawg74


Vin
Regular Member


Date Joined Jan 2006
Total Posts : 312
   Posted 10/17/2008 12:23 PM (GMT -6)   
Eek, with the LGD i'd say its def a good idea to remove the colon. What was the extent of your colitis? Was it pan, left sided, etc?

With me its transverse all the way down to the good ol' rectum. just about all my flares lead me to a high fever, nasty fatigue, flu-symptoms and the rest of the colitis like symptoms. i think i only had one flare where i didnt actually feel that sick, just running to the bathroom alot. The bathroom stuff i don't mind, i just cant take being really sick every year for months. its taking a toll on me, plus all the meds.

I have a colonoscopy coming up in Dec. Curious to see how bad it is then, and how i am feeling, and I think then I will make the descision about needing surgery.
UC since age 22, now 27.  Several huge flares since then.
 
Currently tapering prednisone(35 mg from 80 mg).  Also just starting 6mp again and lialda.   I definately am not liking these drugs.  Maybe surgery one day?


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/17/2008 7:40 PM (GMT -6)   
I'm glad you two got a chance to connect. :-)
 
Jr, when you said you were diagnosed with LGD, I thought you meant Lou Gehrig's Disease, but now I understand that you meant Low Grade Dysplasia. It is a good thing that you're having surgery before it has a chance to develop into cancer.
 
Unfortunately, that happened to Tony Snow. He had UC for years and ended up with colon cancer. He had surgery, but it was too late, because the cancer had already spread. I don't want that to happen to anyone, especially since it can be prevented by having surgery.
 
I'll be praying that everything goes perfectly on Tuesday! Don't forget to tell your surgeon that you want a pain pump after surgery, so you can give yourself pain medicine by pressing a button every 7 minutes - but who's counting, right?! he he he tongue It will keep you comfortable for the first couple of days after surgery, and then you can take pain meds orally as needed.
 
If you have any questions about the surgery and recovery, please feel free to ask.
 
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

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