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Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 4/7/2010 12:22 PM (GMT -7)   
I was just recently diagnosed with Crohns at the age of 31 and I also have a vaginal rectal fistula.  I am off work as I cannot sit due to the pain of the fistula and I have found that I am not in any position to try to go back to work even with the crohns as it doesn't seem to matter what time i get up at... I don't get rid of the chills and stomach cramps and everything else until around 2 in the afternoon.  I am on 8 500 mg of Pentasa a day and was started on a steroid but had to stop that because it made the fistula worse.  I am just wondering how people work with crohns disease as it seems very unpredictable.  I feel so alone no one including my family doctor seems to really understand whats happening and I hate having no control... and to top it all off... I am one of the fat people with crohns.. and even with a flare up I am still gaining weight and no one can tell me why!  
I am hoping you people that know excactly what I am talking about can give me some ideas on living and coping with crohns and even the fistulas..  
*I started your own post, so that you would get more attention and more responses*

artist guy
Veteran Member

Date Joined Jan 2010
Total Posts : 1373
   Posted 4/7/2010 2:31 PM (GMT -7)   
I'm currently on state disabilty, Ican not work in a working environment, I have applied for ssdi. I can work at my own time at my own pace, let me go the bathroom at will, let me lay down if I have gas cramps, let me lay down for general malaise, other issues as well, I'm 59 40 years with cd. i worked the whole time except when surgewry was needed about every 15 or so years

artist guy

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 4/7/2010 3:19 PM (GMT -7)   
Yes, fistulas are very hard to deal with, especially when they are still very painful.

To be honest, I am surprised that you are not on stronger medications. The Pentasa, as far as I know, works better in the bowel and won't do much to help your fistula.

Perhaps you might like to talk with your doctor about starting antibiotic therapy (such as a combination of Flagyl and Cipro), as there is some evidence that the combination of these antibiotics can help in the treatment of fistulae. You might also like to ask about stronger medications like Remicade or Humira, which can be very helpful for people with fistulae. I don't know where you live, though, so you may need to try a few cheaper medications before you'll be allowed to use Rem or Humira.

Finally, you might like to click on the "fistulae and abscesses" link in my signature (below). There is some good information in there on living with fistulae, and treating them.

All the very best to you.

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Regular Member

Date Joined May 2009
Total Posts : 159
   Posted 4/7/2010 3:47 PM (GMT -7)   
I am with Ivy6 on this 100%. I am so very sorry for your pain and situation. You will find others here that are ,or have been, in this same position. Welcome to the forum. It has saved my sanity many time. Believe it or not we, have many "fat" chohn's friends here. Take care,

Mary Lynn

Regular Member

Date Joined May 2009
Total Posts : 159
   Posted 4/7/2010 3:49 PM (GMT -7)   
And just a head's up.... I do not spell very well.

Mary Lynn

Veteran Member

Date Joined Mar 2007
Total Posts : 1632
   Posted 4/8/2010 11:42 AM (GMT -7)   
I agree with the other postings. Pentasa is basically useless for fistulas. You should try something else - like ivy6 said, either antibiotics or Remicade/Humira.
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