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Regular Member

Date Joined Aug 2008
Total Posts : 305
   Posted 8/8/2008 3:27 PM (GMT -7)   
Anyone had to deal with a fistula? I have an ostomy and mine is about 3 inches from it. Kind of scary and wondered how you dealt with it. I've had Crohn's for 30 years and have been symptom free for about 15 years until now. What a drag!

Veteran Member

Date Joined May 2007
Total Posts : 1220
   Posted 8/8/2008 3:55 PM (GMT -7)   
Hello Yellowfin43. I don't have the type of fistula you have, so I can't provide any help for you. I just wanted to welcome you to the Forum! Hopefully someone will be along soon who has experience in abdominal fistulas.

Veteran Member

Date Joined Mar 2007
Total Posts : 4527
   Posted 8/8/2008 4:13 PM (GMT -7)   
Hi I had a abdominal fistula mine occured after abcess surgery .I went on Remicade to heal mine which it did after about 3 or 4 infusions. You"ll have to probably see your GI about it.What are you on for meds?lol gail
Hallarious woman over 50 ,CD ,IBS 27 years--resection,fistula's,obstructions,and still gail

Veteran Member

Date Joined Mar 2006
Total Posts : 1034
   Posted 8/8/2008 7:06 PM (GMT -7)   
i had one from my sigmoid colon to my bladder. i say had cos it required surgery to remove about 8 inches of my colon cos it wasnt getting any better. i had been on remicade for like 5 or 6 years up until then (2005). they postponed the surgery for 2 months cos they did double doses to see if that would induce any healing. it didnt. so now i am truly suspicious and skeptical about the healing powers of remicade. it is supposed to prevent fistulas. but after being on it for years i still developed one, and then it couldnt heal it. i believe it just masked my symptoms cos even though i felt good, i can now see in hindsight my system just got worse, to the point of no option but surgery. now i just have some perianal abscesses that flare on occasion, especially in hot, humid weather. anyhoo, fistulas suck.
Crazy Harry

Crohn's since 1993 (17 yrs old then)
surgery in July '05 - removal of 2 inches at ileum and 8 inches of sigmoid colon (had fistula into bladder)
Nov '05 developed colonic inertia; July '06 told i needed ostomy surgery
began maker's diet in August '06 - now feeling the best ever with no symptoms of colonic inertia and i kept my colon
med free as of 10/31/07

Veteran Member

Date Joined Jan 2003
Total Posts : 6131
   Posted 8/9/2008 2:23 PM (GMT -7)   
hey yellowfin,, i ha dthe xact same thing. only after a while it turned into several holes.. i had wafers and bags covering about 7 holes.. (some were close together) finally got that fixed and had a major hole form up right on my scar.. lasted 4 years before i could get it fixed.. what adrag. used , ostomy bags for that one too. along with ABD 's etc.. do you know where its coming from? like is it coming from your stoma? have you had a signogram? / fistulogram? if its coming from the stoma, i guess you could go have it moved and resected or redone, right?

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 8/11/2008 5:28 PM (GMT -7)   
well, so far, i am fistula free around my ileostomy....thank god (or an equivalent power you may believe in)

I do have a friend who has a traditional colostomy and also a fistula to his abdomen....i know it's hard for him to cope with, but he manages.

I can relate to all that goes with having a fistula though, as I have more than myself or a team of doctors can accurately count. They are all located in my peri-anal area though, and they simply won't go away.

Remicade, Humira, setons, antibiotics, prednisone, none have really closed any of these fistulas, just helped slow down there progression.

I had the unfortunate reality of devloping another abcess this last week, that finally opened up and began to drain this weekend. It is located right at the place where your inner thigh meets with the rest of my "manhood" not fun! completly painful, just to walk, or even sit down, but that's life. I have weathered the storm for qhat seems like forever, and am fully confident I can deal with this new pesty fistula as well as I have with the others.

Reluctantly, I called my GI today to get a referral to my surgeon again, since the setons he put in a while ago have come out, and need to be replaced. That's what probably caused this new one to start! argh!!!!

sorry for not offering much in the line of positive thinking, but fistulas is one of the few things in this world that cause me to use the word "hate"
"I am he as you are he as you are me and we are all together!" - The Beatles

doesn't that just sound cool when you sing it?

Regular Member

Date Joined Aug 2008
Total Posts : 37
   Posted 8/11/2008 6:36 PM (GMT -7)   

I am with you on this one Glad Bag. I too suffer incredibly painful abscesses/fistulas in the geographic area you speak of.....hate is an understatement. I loathe them.  

I currently have a horseshoe with 2 portals. Originally resolved by Remicade (10 yrs ago). Returned 2 years ago (mild) - knocked down by Imuran and antibiotics. Back this summer (severe) - no relief from Imuran etc; went to Remicade with some relief but have had a delayed reaction to second infusion (because of the decade lay off) so most likely headed for Humira.

GB.....are you strictly left with surgery now?

  • CD dx '86. Re-section '93. Dx Crohn's Colitis '98.
  • Participation in Remicade trials (fistulae) late 90's.
  • Manifestations of fissures, fistula, scleritis, polyarthralgia and erythema nodosum.
  • Presently on Imuran, Cipro, Flagyl and Remicade (2nd attempt - 10 yrs later). Possible serum sickness reaction to Remi after 2nd infusion - awaiting consult.

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