NEED OPINION FOR MY UC

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janicebuf
Regular Member


Date Joined Aug 2006
Total Posts : 67
   Posted 10/9/2008 6:26 AM (GMT -7)   
hi everyone, I usually post on the UC board but now I am facing some tough questions and I hope you can help;
 
 
I just got back from my sigmoidoscopy and unfortunately, things looked awful...For starters, I have alot of swelling and tons of polyps in the lower colon.  Hopefully Pseudopolyps, (anyone else on this forum had them?????) but you can't possibly biopsy all of them.  Anyway, I knew it wouldn't be a great scope since I am on 30 mg of pred along with lialdi, etc.Nothing is working, the lower colon and rectum are just bears to calm down.   GI immediately said I need to go on Remicade which I don't have a problem with if it puts me in remission.  Here are my questions though;  why would I even try remicade if it doesn't get rid of the polyps?  (Dr. said those are there to stay.)  The problem to me is the polyps, and since they all can't be biopsied we would never know which one could be cancerous until it's too far along. Does eveything usually need to come out if the disease is confined to the rectum and sigmoid region?
Has anyone ever had the laproscopic surgery and then gotten a j-pouch?  Finally, I live in upstate New York near Buffalo. I would like to get a 2nd or 3rd surgical opinion.  Does anyone know a good surgeon in this state that specifically does what I am looking for? 
 
Many thanks guys, it's nice to know you are always here:)

Diagnosed with 'Indeterminate Colitis' (I think UC for sure), April '03
Remission 6/03
Diagnosed with Psoriatic Arthritis 6/06
Currently flaring (UC)
 
 
 
MEDS: 
Lialdi x 4 daily
canasa suppositories nightly
4x4 400mg Asacol, 
40 mg prednisone ~
50 mg. 6mp
folic acid x1 day
colocort enemas nightly
 
         


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/9/2008 7:44 AM (GMT -7)   
i do not have the jpouch and i did not have polpys but i do have a perm ileo, because of UC that just would not calm down!
I totally understand you being worried abotu those polpys.
Even if you can't have the jpouch have a bag is not a big deal,l it's actually rather convient, lol.

spongebabe2pants
Regular Member


Date Joined Jun 2008
Total Posts : 94
   Posted 10/9/2008 12:04 PM (GMT -7)   
I had tons of pseudopolyps all through my colon. My GI didn't seem especially concerned about them, but he's always warned me about the cancer risk with long term, hard to control disease. I'm really not sure how they would find colon cancer if you already have polyps all over the place, so I can't really give you any advice on that. I ended up having the j-pouch surgery because my UC became to much for me to deal with. None of the meds worked for me, including Remicade and Prednisone. The polyps didn't play a role in my decision, I actually forgot I even had them until just now. I have an ileostomy for now, but am hopefully getting it reversed next month. Getting a second opinion is a great idea; the more information you can get, the better.
Ulcerative Colitis since December 2001 (age 15)
in remission for 6 months in 2002 followed by severely active disease
1st j-pouch surgery done on July 30, 2008


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 10/9/2008 3:26 PM (GMT -7)   
Janice,
 
I'm sorry you're having such troubles with UC. sad I had Crohn's for 7 years in my rectum and lower colon, so I understand what you're going through. My surgeon told me that I was not a candidate for the j-pouch, since my rectum was diseased. It's worth asking, but that's probably the case for you, too.
 
From the studies that I've read, the chance of getting colon cancer increases dramatically after having Crohn's or UC for more than 7 years. After the Remicade stopped working for me, that was a big factor in my decision to have surgery. In 2006, I got a permanent ileostomy and had my diseased colon and rectum removed.
 
I have no regrets about having surgery, because I've been disease-free and medicine-free for two years now. It's such a gift to be healthy again, and I wish that for you, too.
 
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 :)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 10/11/2008 6:13 AM (GMT -7)   

BUMP

Does anyone live in the upstate NY area that can give Janice a recommendation for a surgeon for a 2nd opinion?

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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