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mom2panda
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Date Joined Oct 2009
Total Posts : 713
   Posted 8/23/2011 6:51 PM (GMT -6)   
Hi Collicat,

In a previous post on the UC forum, you had mentioned that your son had surgery with a Dr at Mount Sinai hospital. I believe this is the same surgeon that I am seeing shortly.

If I recall, you had a lot of good things to say about her. Could you give me some feedback on your experience with her? Pluses, minuses? Anything I should know before I have my first consultation with her?

Thanks so much. I am so happy to hear that your son is doing well.
F/42 • ON, Can • UC Dx Sep/09- 50cm (far as flex would go)
- Pred dependent (on pred for 14 months leading up to Remi)
- Remicade Jan 24/11 - up'd to 10mg/kg Apr 14-July 22 - Failed
- May/11 - back on 25 mg pred
- Aug/11 -Trying antibiotic therapy
- Tried: 5-ASA/Imuran • SCD, VSL, other diets, budesonide enemas, cortifoam • Fecal Transplant
- Synthroid, Pantaloc, Iron Infusions, Ciprolex

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/23/2011 9:21 PM (GMT -6)   
Hi...

Dillon's surgeon was Helen MacRae at Mount Sinai.

I have to say that when we had our first consult with her we left after about 30 minutes quite upset and Dillon GREATLY disliked her. Dillon and I went out for lunch and I can remember him sitting there very quietly and then he looked at me and said "that lady is not coming at me with a knife" and that no way was he having surgery.

The problem was that we were shooting the messenger. She is very straight forward, calls a spade a spade, and will tell you all the possible complications....nothing is flower coated. She came across to us, at the beginning, as cold and detached.

After speaking with our family doc, Dillon's GI (who knows the surgeons very well) and others we were brought to the conclusion that we wanted a surgeon who was the very best at what they do and that their bed side manner was not the most important aspect. From everything we heard she truly was the best....so we went ahead. Other docs also convinced us that the cold, detached personality is part of the make-up that makes for a great surgeon.

Skipping forward three surgeries and many months we came to love this woman with every fiber of our bodies. After the decision was made to go ahead with surgery she was absolutely amazing. Dillon was unlucky and had numerous complications (beyond her control) but all were dealt with with competence and compassion. She was always accessible and never rushed when we had concerns....she and her students were absolutely wonderful. She gave such a sense of authority to Dillon that somehow you always knew that everything would, in the end, turn out okay....and of course it did.

I really think that Dillon and I went into that first consult hoping we would hear that this surgery was the magic, easy answer to ridding our lives of UC....when the answer that we got was not quite so simple, we took it out on her.
Try to remember during your consult that she HAS to tell you all the possible problems. This is major surgery and should not be taken lightly. In retrospect I am so happy that we went into it fully educated and really knowing what to expect.

Something you should know is that she at the top of her field in laproscopic surgery. If your situation allows and your surgery can be done that way, healing is much easier. She is also head of the Surgical Skills Center at Mount Sinai and thus is greatly revered by her colleagues.

All in all, I cannot speak highly enough about her but don't be surprised if it takes a while to warm up to her.

I wish you as much success as Dillon has had and I fully believe that you cannot be any better hands.

Please, when you see her, give her our best. She remembers Dillon very well. He is actually seeing her in a couple of weeks.

Wishing you all the best,

Cathy and Dillon Collins
Mom to Dillon (age 20) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS

mom2panda
Veteran Member


Date Joined Oct 2009
Total Posts : 713
   Posted 8/24/2011 6:41 AM (GMT -6)   
THANK YOU! I really appreciate all the feedback, and I will definitely pass along your sentiments.

I am so happy Dillon is doing so well. I foresee needing the surgery, so I hope that I have as good results as he did. Nice that it is lapro too.

I am going into this with pretty open eyes. I have done a lot of research and also saw Dr. Cohen (leader in the surgery) speak last year. He spelled it out very clearly. Complications, drawbacks, positives etc.

If I find her a bit cold, that's okay. The best surgeons are. The surgeon I had for my second endometriosis surgery was like ice, but he was an incredible surgeon and I have never had a problem since.

Question - once you decided to go ahead with the surgery, how long did you have to wait?

Thanks again, Cathy. I really appreciate it.
F/42 • ON, Can • UC Dx Sep/09- 50cm (far as flex would go)
- Pred dependent (on pred for 14 months leading up to Remi)
- Remicade Jan 24/11 - up'd to 10mg/kg Apr 14-July 22 - Failed
- May/11 - back on 25 mg pred
- Aug/11 -Trying antibiotic therapy
- Tried: 5-ASA/Imuran • SCD, VSL, other diets, budesonide enemas, cortifoam • Fecal Transplant
- Synthroid, Pantaloc, Iron Infusions, Ciprolex

Collicat
Veteran Member


Date Joined May 2009
Total Posts : 827
   Posted 8/24/2011 8:45 AM (GMT -6)   
I am starting to forget these facts (which is a good thing) but as I remember, once surgery was planned, I think Dillon had about a month to wait. However, he became very sick, very quickly. Surgery was pushed up to the next week and Dillon was hospitalized for a few days before surgery.

One thing to be prepared for is that if you are relatively healthy your surgery may get postponed on you. The problem is that there is a lot of need for her skills and she is only one woman. I know that when Dillon had his surgery someone else was bumped. We were told, by her office assistant (who by the way is amazing) that this happens frequently.
Mom to Dillon (age 20) who had three major UC flares over two years....Very sick. Colectomy Sept/09, J pouch built Jan/10 and take down Feb/10. Now out living life at University and doing great. NO MEDS
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