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question for suebear

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Ulcerative Colitis
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Posted 3/7/2010 5:19 PM (GMT 0)
     Is there a site where I could find a good GI surgeon who is affliliated at the Univ of PA hospital in Philly?  I must be doing something wrong.  I tried googling it but not much luck.
Posted 3/7/2010 7:16 PM (GMT 0)
Hi Christine - I am not suebear LOL but I found this.....

http://www.pennmedicine.org/hup/

Hope you are doing well!

ElaineNY

Posted 3/7/2010 7:39 PM (GMT 0)
     Thanks Elaine.  Sorry to saysad ...no, I am not doing well.  Looking for a GI surgeon because, although I hate to admit it, surgery is my next step.  Just so tired of this disease controlling my life..having a good day here and there.  Our daughters bought us tickets to Vegas to celebrate our 41st wedding anniversary.  The dates they have scheduled are April 21st thru the 25th.  Glad they bought the insurance.  My oldest daughter is in denial that I am so sick.  Our youngest daughter still lives at home and tried to explain to her sister that mom is not up to a trip to Vegas.  I so appreciate what they are trying to do and hate to disappoint them but just cannot see  myself frantically trying to find a bathroom at the airport and not enjoying myself on the trip.  Calling the GI over at Univ of Pa tomorrow at the recommendation of my regular GI.
Posted 3/7/2010 7:46 PM (GMT 0)
They say the time comes when UC interferes with your life and it certainly is doing that.  Hey, we can all handle a once in a while problem but you and I are not getting any younger - nice to enjoy the rest of our lives, huh?

Good luck to you.  Hope I never have to face your decision but you never know.  You know my husband has lung cancer - in remission for almost 3 years - doing great and then now congestive heart failure and surely he will probably die of that and not lung cancer - you just never know.  We went to Hawaii for our 45th anniversary because of my husband's health.  It will be our 49th in August.  Don't think we could make that trip again.

We do plan on Orlando end of April - praying all goes well for us.  LIke you say - buy the insurance!

Hugs to you,

Elaine

Posted 3/7/2010 7:57 PM (GMT 0)
I am so sorry you will not be able to go to Vegas Christine. I am in the same boat over here, I have family visiting this month and they are making all these crazy plans to go away for weekend trips and whatnot and I am not sure if I can hang on that long before this flare takes over and I am running to the bathroom every 10 minutes. Sorry for the poor writing but I think you know what I mean. I hope you can find a great surgeon and take your life back quickly.

Do you know how long the recovery is for the surgery? Let's just say you have a 2step, how long until you are feeling like you can do whatever you want? I worry, what if I had surgery and I am always worried about leaking or having too many bathroom trips?? It's definitely something to do some research on although I never see people who had surgery and wish they hadn't. It's a step towards a healthy future.

Posted 3/7/2010 8:18 PM (GMT 0)
     I wish I knew those answers notsosicklygirl.  I am extremely apprehensive about having this operation.  I am pushing 64 yrs old with controlled high blood pressure.  I say controlled with tongue in cheek because when I was hospitalized in 08 my pressure was 210/110 on three different blood pressure meds.  They just couldn't seem to knock it down.  I know a lot of that problem was the prednisone.  Right now I seem to do ok just on 20 mgm of benicar with a water pill.  I take my pressure three times a day and if it goes up I take 25 mgm of Toprol xl.

     So many things are going through my mind.  My GI doctor said he was going to give me the full amount of Remicade (I am on the 5gm not 10) and have me receive the infusions more frequently.  But, Friday he mentioned that my last two infusions did nothing and was hesitant about my going further with the Remicade.  He was just sooooo PRO Remicade, thought that would be my miracle drug.  I think he is just as depressed as I am right now...lol.

Posted 3/7/2010 9:16 PM (GMT 0)

Christine,

Yes, there are some great surgeons there.  I can help you find a few, give me a few minutes.

Sue

Posted 3/7/2010 9:28 PM (GMT 0)

Christine,

Dr. John Rombeau

Dr. Scott Goldstein,

Dr. Moreye Nusbaum

Dr. Robert Fry

All of these colorectal surgeons have received rave reveiws.  And you are never too old for surgery for UC.  I have known many who have had surgery in their late 60s, 70s and even 80s!


Posted 3/7/2010 9:36 PM (GMT 0)
Hey Christine:

You live in South Jersey, right? Have you considered looking at Robert Wood Johnson in New Brunswick? I know they are a great hospital although I'm not sure how their GI stats are...my current GI is affiliated with both them and St. Peter's. Also, I believe Mountainside hospital (which may be a trip for you) has gastroeneterology listed as a specialty.
Posted 3/7/2010 9:53 PM (GMT 0)
     You think Robert Wood would have better docs than Univ of PA in Philly?  We are right across the river from Philly, about a 15 - 20 min drive.  I know Jefferson is supposed to have some top docs too.  Usually metropolitan areas attract the big wigs.  We are in south Jersey near Cherry Hill area.  That is probably the town you would be familiar with if you live up north.  Actually our town is Bellmawr, exit 3 of the turnpike.  After dinner...yummy salmon once again...I am going to do some research on the GI surgeons.
Posted 3/7/2010 10:01 PM (GMT 0)

If I were you I would go to Univ of Philly.  Also, you need to look for a colorectal surgeon, not a GI surgeon.

Sue

Posted 3/7/2010 10:02 PM (GMT 0)
Christine-I did some mosquito control work in south jersey so I'm actually fairly familiar with the area. We got off at Bellmawr to go to some of our trapping sites. Also I have college friends who live in Voorhees.

Philly is actually a pretty small city (at least to me), and New Brunswick is a HUGE health care hub (they have the two teaching hospitals, Johnson and Johnson, and Rutgers right there, not to mention JFK hospital in Edison which is like 10 minutes away). I'd say looking there would be worth a shot, at least. It would be closer to an hour or two drive for you, though. And Philly has Temple and stuff, so yea...

Either way, I hope you find a really good surgeon.
Posted 3/7/2010 10:54 PM (GMT 0)
Maybe you can postpone your trip and make it a UC Free celebration? Gook luck!
Posted 3/8/2010 12:17 AM (GMT 0)
     Thank you all.  Suebear, I wrote the names of those doctors down.  Colorectal surgeon is really what I meant...not GI surgeon..duh.  My husband worked for Temple Medical School for 34 years.  Before I was hospitalized the first time in 1998 I saw a GI "specialist" there at Temple...what a freakin quack he was!!!   At the time my symptoms were diarrhea in excess of 15 times a day, urgency and bleeding.  I had lost over 20 lbs in one month.  He performed a sigmoidoscope and I thought I was gonna die.  After the scope he said to me..."well, everything looks fine."  That evening I ran a temp of 102 and my hubby had to take me to the ER in the middle of the night.  They admitted to Lourdes Hospital in Camden NJ and there is where I stayed for the next eight days.  That is when I was diagnosed with UC, fed intravenously the entire time...ugh, what an ordeal.  Sooo, never would I venture back to Temple.  Not to that guy anyway.
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