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have appointment with surgeon on the 27th

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Ulcerative Colitis
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Posted 5/16/2010 12:26 PM (GMT 0)
hey guys and girls,

im pretty much out of options, am currently on 6mp, cyclosporin and 10mg of pred ( trying to get off, as vie been on it for over 8 months now, most of which time i was on 50mg ) remicade and humira are out of the option partly due to not being funded for use in UC in australia yet, and because it not safe to use them while/ or within a month or so of being on cyclosporine as there has been reports of deaths and other serious side effects.

anyway - the reason for posting.

ive got an appointment with a surgeon coming up ( im pretty much set on the surgery, just want this disease gone already ). and i just wanna make sure i ask all the relevant questions and don't miss anything. so was wondering what sort of things you guys asked your surgeons before you went through with it, or if you have already had a consult. so anything you think is worthwhile asking just post up, it would be really appreciated. :)
Posted 5/16/2010 12:34 PM (GMT 0)
Wow, I can't believe how many more people are going for surgery now. Well, like I have said, and like others that have gone through it have said you will be very happy! My surgeon was open to me emailing and calling him at any time to ask him questions that I have forgotten. I had a list somewhere that I will look for. If I find it I will send it ovver to you. Just jot everything you think of down.
Posted 5/16/2010 1:47 PM (GMT 0)
     Good decision Webby.  I have suffered with this disease for almost twelve years.  I was never on cyclosporine but did run the gamut of the other meds...6MP for over seven years (never kept me in remission), Remicade which failed after my 3rd infusion, and Humira (first injections on March 24th).  With the exception of the cease in bleeding, which is probably thanks to the prednisone, there has been no change.  I still have moderate inflammation in the rectum.....moderate but feels pretty severe to me.  The urgency is terrible.

     I met with a colorectal surgeon last week in Philadelphia (I live in south Jersey) and surgery is scheduled for June 28th.  He wants to make sure the Humira is out of my system.  My last injection was about 11 days ago.  I opted for the permanent ileo because the surgeon said it would be easier on me than the j-pouch because of my age.  I will be 64 in August. 

     I, too, have millions of questions swirling in my head but suebear gave me a website to contact and I think I will go over there and talk with some people who have had the operation.

     It seems like many of us who haven't had success with the many treatments for this disease come to this decision and I think it is the right choice for me. 

     Good luck to you.

Posted 5/16/2010 7:05 PM (GMT 0)

I wanted that disease gone too, so I understand exactly how you feel  : )

Just make sure you speak with your doctor about the pain management after the surgery while in the hospital and once you're home.  I recommend a pain pump if your doctor will do it.  I had my surgery laparascopically and it still hurt like mother...but oh so worth it!

You know, the most beautiful and amazing part of having the surgery is that above the pain form the surgery, the sore back from laying on the table, etc. you can feel the UC gone...and it's the most incredible thing in the world!

I also suggest you post on the ostomy board b/c there are a variety of people there with different current and past situations.  I for one, have a permanent ileostomy.  I wanted nothing to do with surgery in the future and just wanted to get a move on with my life, so I took the ileo and never looked back!  So glad I did, I love my stoma, I named her Penelope : )

There are loads of people who have a temporary ileostomy and go for the reconnection surgery (j-pouch).  You can find additional support from j-pouch.org as well.

When you're ready to talk about what to expect about the surgery itself let us know and we'll fill you full of fun and useful tips!

Have a wonderful day! And good luck with your appointment!

smurf
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