Hi from a newbie

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New Member

Date Joined Aug 2010
Total Posts : 12
   Posted 8/23/2010 11:39 AM (GMT -7)   
Hi All,
Just joined the forum today, having gotten fed up with the newsgroups.
A little background on my condition:-
Was diagnosed with UC at 17; condition has always been quite mild to moderate, with a flare-up generally every year now, which requires steroid treatment.  I've had a few bouts with anxiety and always panic/worry about finding a toilet.  For the past couple of years I have struggled with various doctors to prove I have a couple of very embarassing fistulas, but hopefully now they have found them and as a result they have changed the diagnosis to CD, although I have been told there is very little they can do for them.
Look foward to picking your brains for advice/support and hopefully after all this time I might be able to offer some words of wisdom in return.

Diagnosed with UC in 1990. Diagnosis changed to CD in 2010.
Current med's: Asacol and Predfoam, plus a few alternative therapies.

Veteran Member

Date Joined Feb 2003
Total Posts : 1811
   Posted 8/23/2010 11:53 AM (GMT -7)   
Welcome! There is a great suport group here! There is medication that can help with fistulae (remicade, I think), but you'd have to be willing to take it and your doc would have to be willing to prescribe it. I'm no expert on those, so hopefully someone else can come along with better info.

Regular Member

Date Joined Jan 2010
Total Posts : 265
   Posted 8/23/2010 1:37 PM (GMT -7)   
Welcome, Blue!

And Yep, it is Remicade for fistulas. Talk to your doc.

Remicade is not small business. Do you have guts for big guns (no pun intended!).
Male, 35 (lovely family of wife and two daughters)
Diagnosed in nov/94 - Started with Prednisone, followed by Pentasa, entocort, flagyl, Imuran, Cipro, etc.
Blockage (popcorn!!) - First Surgery 2001 (no ressection)
Severe bleedind - 2003 - Stopped by 60mg of Prednisone
Stricture leading to a ressection in Dec/2008 - Second Surgery
Now on Remicade + 100 75mg Imuran + Iron (doc said i'm in remission, but I'm not sure at all)

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 8/23/2010 3:27 PM (GMT -7)   

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 8/23/2010 4:39 PM (GMT -7)   
Welcome to healingWell, glad you found us. But I am sorry you have to be here.
Still, its an excellent place for support!


New Member

Date Joined Aug 2010
Total Posts : 12
   Posted 8/25/2010 12:09 PM (GMT -7)   

Thank you for your replies, I have been finding out loads reading all the posts, it feels as if I have been missing out. My doctor has suggested remicade but not for the fistulas, more to have an alternative in a flare up instead of steroids.  I am concerned about the side effects.  But will wait and see if it's necessary.  My surgeon is going to go back in and try and put setons in them, but as he couldn't find them the last time, despite me just having had an MRI which apparently clearly displayed their presence, I will just have to wait and see. If the fluid from an enema and the other obvious items run through it!! They must be really narrow.


Diagnosed with UC in 1990. Diagnosis changed to CD in 2010.
Current med's: Asacol and Predfoam, plus a few alternative therapies.
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