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Ulcerative Colitis
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Posted 10/13/2010 2:27 AM (GMT 0)
Hello everybody.  I am new to this forum, but I really hope to get some good info here. 

I was diagnosed with UC and PSC about a year ago, and so far the only thing I've found that really helps me is the dreaded Prednisone.  My Dr. recently told me to start thinking about colon removal.  So, if anyone has any experience with that, I'd be all ears.

It's is nice to find a place full of people with a similar disposition, not that I'm glad you're in this mess, I'm just glad there are others with a common situation.  Thanks for letting me share my side of the story.

Posted 10/13/2010 4:35 AM (GMT 0)
Glad you could join the forum and share your story. What else have you tried beside prednisone that colon removal would be your doc's recommendation at this point? There are so many options available that you may not have tried. Removal is the last resort.
Posted 10/13/2010 4:52 AM (GMT 0)
Hi Rifle! I don't know much about PSC aside from what I just read on wikipedia so unfortunately I can't help you out there. If you're looking into surgery and want to go for a j pouch I would highly recommend you check out jpouch.org; they have a lot of good info. Also search youtube for UCVlog. It covers the experiences of a guy who goes through the entire process of having his colon removed and a j pouch made.

Of course there is also a wealth of information here on healing well also. I really don't know what I would have done without the amazing support and information I found on sites like this. I hope you find all the information you're looking for.
Posted 10/13/2010 4:58 AM (GMT 0)
This is the first time I've ever heard about PSC. I'm assuming it's primary sclerosing cholangitis. I read that there is a strong association between primary sclerosing cholangitis and chronic ulcerative colitis or Crohn's disease.

Yes. I too recommend checking out jpouch.org.

Before you do, can you tell us more about your experience with PSC? Thanks.
Posted 10/13/2010 5:10 AM (GMT 0)
Just to add to what Journey said, I would also recommend not jumping into surgery to hastily. Most people are happy with the results of the surgery, but there are also a good number of potential complications you could develop. Before deciding on surgery check out your pharmaceutical options. Though I don't know if PSC limits your choices in that respect; I know some of those drugs are hard on the liver.
Posted 10/13/2010 2:07 PM (GMT 0)
Perhaps quincy will be along with info about PSC...wealth of knowledge she is :)

Also, what other meds have you tried?

Posted 10/13/2010 2:52 PM (GMT 0)
welcome aboard
Posted 10/13/2010 11:05 PM (GMT 0)
WOW!  Thanks for all the great replies.

Some of the medicenes I have tried, other than prednisone, are Asacol, Mesalamine, Imuran, and Remicade.  Unfortnately, none of these medicenes are effective.  Also, because of the PSC I am limited on what medicenes I can take.  Actually, I had to be taken off Imuran before it even had time to work, because it adversely affected my liver.

As for the PSC, no one really knows a lot about it, especially me.  What I understand so far is that it is similar to UC, in that it is an autoimmune disease.  The difference is that it affects the bile ducts of the liver.  While the bile ducts are inflamed, the bile backs up into the liver causing liver damage.  There's no treatment for it currently, and eventually transplantation will probably be necessary.  People with both PSC and UC are at a higher risk for colon cancer, so that's another reason why the Dr.s think it might be a good idea to take it out.

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