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To B or not to B - a question of surgery

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Crohn's Disease
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Posted 2/26/2009 10:52 PM (GMT 0)

So I have been poking around here on the board for a couple of weeks but I haven't had the nerve to bring up my issues.  I finally have the courage.  Please be gentle.

A little history...I was diagnosed with Crohn's Disease at the age of 10.  I have been treated with various medications (6mp, imuran, azulfadine, prednisone, etc.) and with surgical options (resections X2).  Currently, I am living with a cronic rectal stricture that is treated with balloon dillation about every 3 months.  My gastro has been at me for about 15 years to get a colostomy.  I finally caved in to his request and agreed to talk to a surgeon.  I really only agreed to do this to get him off my back about it.  I had no intention of actually doing it.

At my last colonoscopy, I was informed that my ileo anastomosis (my splice where they reconnected me) has developed moderate crohns disease and a persistant stricture.  Apparently it is at a curve and would be very dangerous to try to force it open.  He said "it needs to come out."

I had a follow up appointment with the surgeon later that week and she immediately said "it has to come out and we need to remove the rectum also."  I was devastated.  Seriously devastated - Xanax is the only reason I can even type this now.  My first instinct was panic but then after talking with a lot of people, I have decided to get a second opinion.  Here is my issue...

How do you get a second opinion?  I can get my records easily enough, but how do I get another doctor to actually look at them.  I really want to eliminate my gastro from the process because I don't want him to influence the second doctor.  Does anyone have any suggestions?  I want to find the McDreamy House doctor of the gastro world.  Please help.

Posted 2/26/2009 11:42 PM (GMT 0)
Hello Annyb!

I understand your concern about annoying your doctor in getting a second opinion. But this happens all the time. She has probably given second opinions herself. It is common and all part of the job. I think your doctor will want you to get as much information as you can so you are at peace with the option you pick (as much peace as anyone can be in with this darn disease!) . You need to make the decision and be confident that this is the best option for you. Please don't feel badly. Set up an appointment with another doctor and tell them you are seeking a second opinion (and need one quickly because of your condition). You can get your records by calling your current doc's office and asking the staff for them. Often they will fax them to your second-opinion doctor.

Also, you might want to check out the ostomy forum. Lots of people have had ostomies for decades and have lived full, active lives! And feeling better just might make it all worth it!

Take care!
Posted 2/26/2009 11:55 PM (GMT 0)
Hi Like your definition of a house Dr. got a little chuckle out of that. I think I would need something to settle my nerves to ,any surgery is a bit intiminating.. You must have a bad case of crohn's to need so much surgery. Are there many specialist where you live? Not sure how you go about a second opinion as it is something I haven't done..have you had a lot of rectal problems? Keep us updated on how things go ..lol gail
Posted 2/27/2009 12:09 AM (GMT 0)
Thanks. Humor is about the only thing that works for me. There are some specialists around here but I think I want to look outside of the area. There are basically 2 practices in town and they talk to each other. Plus, the surgeon was from the only colorectal surgery practice in town.

Rectal problems - not really any other than the stricture. Mild bleeding but it is always bright red which I was told indicates that it is from the "exit" area and thus most likely from the stricture itself. Other than normal hemmies, I have had no other issues.
Posted 2/28/2009 1:47 AM (GMT 0)
Hi I agree that a bit of humor helps alot when it comes to living with crohn's. Hope you can get your other opinion .Perhaps just ask your GP if they can recomend another Dr. as you would like a second opinion.. lol gail
Posted 2/28/2009 2:02 AM (GMT 0)
I don't now if you can get to a teaching hospital, but if you can and they have a colorectal surgeon and/or GI docs with CD expereince, then I recommend you see them. I found -- through hard experience -- that surgeons like to do surgery. That is what they trained to do and that is how they make their money -- they get paid by the procedure. Doctors in the teaching hospitals here get paid a salary so they don't care if they operate or not. I say this because it makes me nervious to hear of surgery for Crohn's because Docs say that is the last resort. Crohn's is known to return at the incision site (not always, of course).

What your doctor is recommending is a big step, and it may very well be the right one. But getting a second opinion is wise considering this can't be reversed.

Please take care!
Posted 3/1/2009 1:47 AM (GMT 0)
Annyb,

In 2005 I went to my GP and told him I was fed up with my GI.
He suggested another GI in the area(they all know each other).
Of course get ready for all the tests,But the new GI hopefully
understand your fears, and treat you kindly . For a small fee
your GI will fax your records to the new GI.
Posted 3/3/2009 12:12 AM (GMT 0)
I have to add that it isn't that I don't like my GI. He is fabulous, flexible and understanding. The surgeon that I saw on the other hand was kind of abrupt. I describe her as a "Christina" from Grey's Anatomy. I'm hoping for someone more like an Izzie. When she told me I had to have the ileostomy, I cried hystarically (who didn't) and then she wanted to see my belly so she could see where it would go. I was freaked out and she was practically drawing on my stomach. ugh!

Anyway, I appreciate all the recommendations. I have gotten a hold of my last 2 years of records and I have checked with a somewhat local teaching hospital.
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