fistulas - who else has been through the nightmare?

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Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 6/25/2007 5:19 PM (GMT -6)   
So i have been poking around on this board for a while, and notice one thing that is i miss a little.....for the most part, this site, has helped me in so many ways......i had surgery recently and learned so much.....but on the other hand...there is something missing.

Most people seem to be pretty open, however, no one ever seems to talk about fistulas. In my experience, this is the hardest aspect of the disease to deal with (Crohn's disease).

so, i am just gonna throw this out there?

anyone ever had a peri-anal or entero-vesicular (to the bladder) or any other kind of fistula?

they can show up in the worst places, can't they?

how do you guys deal with the associated drainage and pain?

what about abscesses?

Most importantly......has anyone ever had a fistula that healed and never came back...they always seem to come back.....and then scar tissue is formed.

i myself have way too many of these little pests eating their way through my bowels, and most-private areas. It drives me nuts and just when I think I am getting back to normal, ouch!!!!!!!

so, i guess i just wanted to hear someone else talk about the ouch times, instead of fluffing up everything......sometimes i just get kind of irritated and wonder how many others are dealing with this....the other day i just about freaked out, there was no way to get away from the awareness of my illness, the pain, the irritation, the drainage......ahhhhhhhhhhhhhhhhh!!!

now I am single again, so I have to explain this very intimate aspect of my life to some new girl, all in the hopes that she sticks around and i don't have to do it again on the next date with the next girl.....

i know I am whining....but isn't that what this message board is for....

come on people....make me feel better by telling me i am not as alone as i have been feeling!

and while you are at it, call the Whambulance! 'cause i am whining like a baby!

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 6/26/2007 2:22 AM (GMT -6)   
Have you posted to the Crohn's site? There have been many posts on fistulas.

My pelvic floor fistulas, rectovaginal, and perianal fistulas have not returned since I've had my ostomy. After many, many years of remission, I have had one abdominal fistula and a couple fistulas around my stoma that are much easier to deal with.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade still on Prednisone (my worst enemy), Surgery scheduled for early July. 
 
 


CampingGrl
Regular Member


Date Joined Jun 2007
Total Posts : 21
   Posted 6/26/2007 11:13 AM (GMT -6)   
Im a fellow Crohnie and just recently experianced my first fistula, One week before memorial day I started passing gas through my "girlie parts" and low and shocking behold memorial day starting getting stools right out through the vagina, One week after that Im in surgery to repair the fistula and found out all my colon was ravaged with disease and I chose the option for permanent ileostomy. that was june 7th.

When I saw the poopy in my underwear and knew it had come from where it shouldnt have I was SOOOOOO upset and really felt I hit rock bottom, I never had anything more than a stricture my whole 12 yrs of Crohns life.
Im ready to move on and start my new ostomy life over with a smile and hope and pray *fingers crossed* that I never have another crohns related surgery again.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 6/26/2007 4:55 PM (GMT -6)   
right there with you campinggirl! thanks for the little story...i remember the first time i passed gas through my "manly part" what a surreal moment.....i could do without that surreal moment!

since then though i have had surgery too things seem to be getting better, though they the problem is still there calling my name saying "hey, weirdo, i m still here, haha.....what you gonna do about it!"

anyway.....really, i do apprecaite anyone else sharing their story......

here's a quick one about playing poker....

well a few weeks before my surgery for an ileostomy, my friend asked me...., "so, are you gonna pass gas in the bag too?" i said to him, "Good question?" as at the time, i had no idea about it, but logic follows and sure enough

a few weeks later.....

i am at the Commerce Casino in LA at a noontime Texas hold' em tournament.

There are 8 other players at the table and things are pretty quiet....the player to my right checks the bet, and i sit there, right as I say "I'm All In" i feel it, and then hear it! oh my god, i am not sure who else heard, they had to have heard, but everyone was still cool about it, prob. cause they had no idea who it was.....or what is was....

anyway, i lost the hand....but talk about maintaining a poker face! i played it soo cool, then got up and told my buddy, the same one who had asked me the quetion to begin with weeks earlier.....what a laugh we had.....

thanks again campinggirl! anyone else got something funny, or sad, or bizarre, or interesting...???? Anyone...?

vette guy
Veteran Member


Date Joined Nov 2006
Total Posts : 650
   Posted 6/27/2007 2:46 AM (GMT -6)   
In my house the "f" word refers to fistulas. I had many perianal (I know I'm spelling it wrong)fistulas before my ostomy. They are relentless and extremely painful. It was a fistula to my bladder that caused me to require ostomy surgery. In a way it was a Godsend, though. Now that I have an ostomy I am no longer in pain and I no longer have to case the joint for the nearest bathroom. I know having an ostomy can sometimes be inconvenient. But it's a lot less inconvenient than having full blown Crohn's!!!
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