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Ulcerative Colitis
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Posted 9/24/2011 3:39 AM (GMT 0)
I don't have UC but what my disease is I can't find any real message boards since it is rare. I was sent here by a online friend who had her colon removed and said this forum was her saving grace basically.

I got diagnosed today with FAP after having 100 polyps removed and now have to schedule a colon removal, they re route the intestine, no j pouch or bag. It is just all very scary and I can't seem to find anyone that even knows what FAP is. Just looking for advice for anyone that had their colon removed. I suffer from Interstitial Cystitis as well so someone dealt me a crappy card! I have no benefits and work as a contractor so this surgery might cost me the temporary job I have and money...

Scared, nervous and hope to meet new friendly people. Never thought at age 35 this would happen. Like a truck hit me when I woke up from my colonoscopy and endo.
Posted 9/24/2011 7:53 AM (GMT 0)
Hi..welcome to the forum.  I don't know how much information you'll get on here regarding  FAP.  .I've never heard of FAP (Familial Adenomatous Polyposis), did a quick search and initially I'll ask you if you've done family enquiries as to others who have it?

This is an good link with other links that might be able to lead you to more information or other links that might have message boards/forums.

http://ghr.nlm.nih.gov/condition/familial-adenomatous-polyposis

Interstitial cystitis has been mentioned by a few women on here occasionally.  Some have it in conjunction with UC, and from my experience of being tested for it, I was relieved it was negative.

I found this site that also may be of help that can get you connected with a lot of information. 

http://www.ic-network.com/

It's sad to hear you have two devastating diseases to deal with.  I hope you have support from family and friends as well as doctors/medical.

quincy

Posted 9/24/2011 1:18 PM (GMT 0)
Have you tried jpouch.org? I know you said you aren't getting one, but there are people on there who have FAP.

I'm sorry you're going through all of this.
Posted 9/24/2011 3:57 PM (GMT 0)
I looked briefly on jpouch. Will check back just no real site to post about FAP and what odds 1 out of 10k. Crazy and nobody in my family has FAP, I am the first that we know of.

I have had IC since age 6 so I know all the site thanks! I am having stem cell treatment done for it in a couple months. Just crappy timing. Now a new thing to deal with.
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