Fistulas - who else has one of these nightmares?

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!

GladBag,

I can totally understand whining because of a fistula! I have had several surgeries for them, and the abcesses, that my ass looks like a mine field. Hopefully, after my bum heals from my colostomy, I will finally be free of the pain.

Jessica,
You had your ostomy surgery one day after mine!

In 1981 I had a J-Pouch and 17 months later.....  FISTULA!  What a horrible thing!  At first the doctor thought it was a female problem but alas, when it was opened to drain the smell about knocked us all over!  I had numerous surgeries for a repair which never worked.  Including being the first person in the world to have a muscle transplant from my inner thigh into my rectum, to no avail!!!  I went through hell for years and my doctors never gave up on me.  How lucky I was.  All the pain and discomfort is gone now as I have a permanent illeostomy.  It is the third time for me so I had no misconceptions what it was about.  I can tell you that not once since my last surgery have I ever regretted taking that final permanent step!  I have been written up in the New England Journal of Medicine three times.  My family has been part of a genetic study at Hopkins since the 60's.  I have FAP.  But I am now living a normal life and to make a few of you depressed folk smile (and I had my share of depression) at least my ass don't stink!!!       

i had fistulas, fissures and absesses around the anus area, also inside the rectum. brutalbrutalbrutal. but the surgeon cut all that out when i had my proctolectomy, so no more problems!

--matt

I also had fistulizing Crohn's Disease and ended up with an abscess on my right butt cheek. It was the most pain I've ever felt. When I was in the hospital to have it surgically opened up, they gave me I.V. morphine, and I still felt the pain. After that surgery, I had an open wound on my butt that had to be packed with gauze several times a day. I looked like a rottweiler had taken a chunk out of me, and I couldn't sit comfortably for months!

That's when my doctor recommended that I have a temporary ileostomy, because she did not want the wound to get infected with bacteria. It all turned out to be a blessing in disguise, because I would have never agreed to the ileostomy surgery if it weren't for the abscess.

After trying it out for 8 months, my colon flared, even though it was bypassed. By that time, I liked the freedom of having the ileostomy, so I decided to have a proctocolectomy and get rid of the diseased colon and rectum once and for all. So far so good, I'm 10 months post-surgery and feel great! And it all began with a tiny fistula.

Hey, GladBag, if you tell a girl that you're dating your story about how sick you were and how you're not sick anymore, I would hope that she would understand. If she doesn't, then you'll find out quickly that she's not the girl for you. Good luck :)

Glad Bag - I had setons, too. They hurt and drained all the time. I can sympathize with what you're going through. My surgeon didn't remove them until I had the "big" surgery to remove my colon.

I work in an office, so I sit at my desk most of the day. I continued to work full-time while I had the setons, and my butt would be so sore that I would have to take pain medicine just to get through the day.

I'm all healed up now and can sit comfortably again, but that was a rough time.

Wow, i've checked out this forum once in a while, but never really read much. Now i read this thread and it's like something i could have posted myself.
Had the colon removed in Aug 06. Fistulas started showing up long before that though, and thats when my Crohns
seemed to get worse. It got to the point of the summer of 06 where i couldn't stand up straight without being in so much pain. Ended up in the hospital for 2 weeks and then they decided to take out the colon. A " bloody mess of a colon" as my surgeon put it. But the fistula never really caused my any sort of pain. Just the drainage was annoying. I had the setons put in sometime in March and it continues to drain. Had a couple of small abscesses back there, but my surgeon just " lanced" ( is that really a word?) them, which was probably more painful than the actual fistula. So i gotta ask, how are they painful? In what way? I honestly never would have known i had one except for the drainage and the docs telling me. I read the post from the woman saying she had a vaginal fistula. I can't even imagine what that would feel like. Being a guy, where else can they show? I feel like i'm lucky it only drains from my rear. My GI says the next step is to attempt Humira ( sp?) to heal it up but from the years of meds that seem to have done as much damage as the Crohns itself, mainly to my lungs, i have to wait. Yay me.

Haven't read this forum much like i said. But now it seems i can't stop reading. It's good to hear people talking about all this freely, or at least posting about it. I don't know anyone personally in my life that has anything like this.

Hah. I work in an office, so i may talk with people all day long who have fistulas and never know it. Just doesn't seem to come up in conversation all that often.

" So, how you been? Kids doing well? How 'dem fistulas treating ya"

Just doesn't happen.

Unfortunately I suffer from minefield ass also. Started when I was 12 years old (27 now). Recently I recently started taking a cocktail of Azathioprene and Remicade and thankfully things seem to be settling down. Keeping my fingers crossed!