Fistulas - who else has one of these nightmares?

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Glad Bag
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Date Joined Mar 2007
Total Posts : 699
   Posted 6/25/2007 5:18 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!

jessicapeanut
Regular Member


Date Joined Mar 2007
Total Posts : 21
   Posted 7/1/2007 9:25 AM (GMT -6)   
I have had Crohn's or sometime and have have fistulas, anus, vagina and everywhere in between ( not the bladder thought). I know what you mean about pain and drainage. The last fistula I got was the doc could not find tha abcess until he did exploratory surgery and left me a whole the size of a quater. It felt like I had broken glass in my crotch everytime I walked. I but up with that for 4 years and decided I could not live with the constant fear of stuff coming out of the fistulas and he pain so in late April I had the colon out and reconstructive surgery of my entire crotch due to the fistulas. They took a muscle out of my leg and rebuilt it all.

You are not alone believe
Jessica
Jessica

Living with Crohns for 16 years. Numerous surgeries and hospital stays. Lots of fistulas and infections which caused a log of damage. Got the bag on April 25th 2007 and reconstruction which they took a muscle out of my thigh.


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 7/4/2007 8:42 AM (GMT -6)   
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!

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 7/5/2007 1:37 PM (GMT -6)   
so yours and mine both look like mine fields!

thanks for the support ladies......wow this page is so cool, cause the only person from the female perspective i can talk to about this stuff is my sister-in-law...

ummmm......so, my question is any ladies reading this, when do i bring this issue up to someone I am dating? including the ileostomy issue?

obviously, before we are intimate for the first time.....but, it is so scary, considering i get scared the person will turn and run at the very beginning of that very difficult conversation...

if there are any guys out there who have overcome this obstacle, let me know your experiences.....
"I like rice....rice is great if you are hungry and want 2000 of something...."

"I like blackjack....but i/m not addicted to gambling....I'm addicted to sitting in a semicircle"

"I don't have a girlfriend....but i know a lady who would be upset if she heard me say that"

Videochat with me on camfrog.com: camfrog id: natglad1


Steviegirl
New Member


Date Joined Jul 2007
Total Posts : 7
   Posted 7/8/2007 10:41 PM (GMT -6)   

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!!! tongue       


sosueme
Regular Member


Date Joined Mar 2007
Total Posts : 53
   Posted 7/9/2007 9:58 AM (GMT -6)   
hi steviegirl i also have had that surgery musle (sp) from inner thigh to rectum ,mine was because of where my rectum would not heal. In 87 they would leave that open to heal, mine didn't that's why the muscle graph was done. Thanks for breaking the trail .

awesomeame
Veteran Member


Date Joined Feb 2006
Total Posts : 625
   Posted 7/11/2007 5:52 PM (GMT -6)   
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
Dec 2006: Proctocolectomy/permanent ileostomy
Since 1991: Indeterminate crohn's/ulserative colitis


justjenjen
Veteran Member


Date Joined Nov 2003
Total Posts : 518
   Posted 7/17/2007 12:58 PM (GMT -6)   
Gladbag, do you have a permanent ostomy? Have you had any form of remission since the ostomy? I was just wondering. I've had loads of fistulas and it sucked. Totally painful, too. I wish I could give some advice as far as dating but I've got nothing. Personally, I'm a fan of honest and direct.

flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/22/2007 7:51 PM (GMT -6)   
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 :)
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)

Post Edited (flchurchlady) : 7/23/2007 7:35:46 PM (GMT-6)


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 7/25/2007 11:23 AM (GMT -6)   
justjenjen said...
Gladbag, do you have a permanent ostomy? Have you had any form of remission since the ostomy? I was just wondering. I've had loads of fistulas and it sucked. Totally painful, too. I wish I could give some advice as far as dating but I've got nothing. Personally, I'm a fan of honest and direct.


uhhh....let's see, remission since the ostomy....well, at the same time i had the srugery for the temp ostomy, the docs put about 5 or 6 (who knows, maybe more?) setons into the fistulas to help them drain and not get infected.

the best part about the surgery, is that immediately, the fistulas healed enough so that I could sit without being in total pain, which was how bad it had become prior to the surgery.

I have not been sick at all as far as nausea or vomiting or any of the discomfort associated with having a regular BM (like diarrhea, painful fistulas due to diarrhea, etc...)

however, the fistulas are still there and will not close completely as long as the setons are in. (in case you don't know setons are like little rubber bands they put inside the tract of the fistula to allow them to heal/drain effectively)

so for now, i actually would rather keep the ileostomy for good rather than having it reversed in another 9 months or so, since i am fairly confident the fistulas will get worse again after the reconnection of my large intestine.

who knows......all i know is now i am ten times happier not having to have the pain i had everytime i went to the rest room, or just tried to sit in my chair at work...

as for the dating thing....i'll find someone here one day.....NBD (no big deal).....

Ok gotta go actually work...... One Love - Nat
Save yourselves.....do something crazy! download videochat from camfrog.com
my id is: natglad1 i'll see you in cyberspace..also find me on myspace.com/nathanael_glad aka Ned Flanders
****oh, yeah....my illness/symptoms/progression....ummm...it sucks....let's just say I put the "Bag" in "GladBag" ok! / diagnosed at age 15, i have made it to 30 now (yeehaw), temp. ileostomy 4/20/07 due to multiple, persistent fistulas of the worst imaginable variety....any fistula sucks if you ask me..but now that I had surgery....I am loving live..for the most part..if I could only find a new girlfriend


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 7/25/2007 4:17 PM (GMT -6)   
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. sad
Dx'd w/ Crohn's in '99 at age 28. Proctocolectomy and ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 7/25/2007 5:37 PM (GMT -6)   
yes, i know.....a vicodin a day, keep the @ss pain away!
Save yourselves.....do something crazy! download videochat from camfrog.com
my id is: natglad1 i'll see you in cyberspace..also find me on myspace.com/nathanael_glad aka Ned Flanders
****oh, yeah....my illness/symptoms/progression....ummm...it sucks....let's just say I put the "Bag" in "GladBag" ok! / diagnosed at age 15, i have made it to 30 now (yeehaw), temp. ileostomy 4/20/07 due to multiple, persistent fistulas of the worst imaginable variety....any fistula sucks if you ask me..but now that I had surgery....I am loving live..for the most part..if I could only find a new girlfriend


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 7/25/2007 6:06 PM (GMT -6)   
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.

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 7/25/2007 6:17 PM (GMT -6)   
Slice:

you don't know anyone personally, huh?

that's cause all of us fistula freaks like to hide out on the internet, where we can't be exposed to the real world....haha...just kidding....

anyway, as for pain, if a fistula starts to close, it can abscess, and that is extremely painful....it's like the infection is stuck inside and can't get out....kind of like a really sore pimple or something....

not to mention the drainage can cause a rash / yeast infection and that makes it hard to walk without irritating the area

and then, of course, the ultimate in fistula pain, half-digested food or other yucky stuff stuck in there from the inside trying to get to the outside!

however, you are right, sometimes they don't hurt much at all....but how annoying is all that nasty drainage?

i opted for the temp ileostomy, vs. the total colonectomy, although my doc suggested i might want the latter since it is likely I will need future surgeries.....

i just couldn't part with my twisted, mutilated colon....


ok, see you here soon again....keep posting, or just reading......whatever
Save yourselves.....do something crazy! download videochat from camfrog.com
my id is: natglad1 i'll see you in cyberspace..also find me on myspace.com/nathanael_glad aka Ned Flanders
****oh, yeah....my illness/symptoms/progression....ummm...it sucks....let's just say I put the "Bag" in "GladBag" ok! / diagnosed at age 15, i have made it to 30 now (yeehaw), temp. ileostomy 4/20/07 due to multiple, persistent fistulas of the worst imaginable variety....any fistula sucks if you ask me..but now that I had surgery....I am loving live..for the most part..if I could only find a new girlfriend


Slice
Regular Member


Date Joined May 2004
Total Posts : 277
   Posted 7/25/2007 6:30 PM (GMT -6)   
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.

mikel
New Member


Date Joined Sep 2004
Total Posts : 9
   Posted 8/8/2007 11:08 PM (GMT -6)   
Glad,
so sorry to hear about your fistulas. They are a horrible part of our lives, but most of us probably have them.  I have had so many, like you, in your private areas, and they hurt. The forming of the heads, the draining, and then they keep coming back. I have had so many removed, out-patient surgery, but they keep coming back.  I am a 46 yr old male, who has had crohns for 20+ yrs now, and even once I had the colostomy, the fistulas still keep coming back. As a matter of fact, I just left my job, because I cannot sit for long periods of time, because of the fistulas. I am really considering applying for perm disibility, working for 20 yrs with this, has been long enough.  Oh yeah, my butt looks like, I don't know what, I don't look at it anymore, lol.  Good luck, keep up the great attitude, you'll be fine.

Hot Soup
New Member


Date Joined Sep 2007
Total Posts : 1
   Posted 9/15/2007 6:06 PM (GMT -6)   
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!
Smoking kills. And if you're killed, you've lost an important part of your life - Brooke Shields


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 9/16/2007 3:56 PM (GMT -6)   
Glad Bag,

Hang in there! I too had fistulizing Crohns--I only had one fistula, which was perioanal so I never really noticed it until it became a huge abscess. As the abscess got bigger, I wasnt sure what it was and waited it out (stupid, I know), until it grew so much that the right side of my bum was swollen twice the size! I could not sit down--I had to ride to the hospital on all fours in the back seat of the car..! When the doc opened it up, he said it "was the biggest abscess we have ever seen in this office." Nice.

Anyway, I am writing most importantly to let you know that this fistula of mine, which they told me might not heal up, did indeed Heal and has been closed for over 8 years! Now, it only closed after my doctor put me on Remicade and azathioprine, like Hot Soup. Remicade has done wonders for me--I am not sure if you have tried it yet, but it is truly amazing. It kept me symptom free for over 5 years straight! (lately, after going to grad school--very stressful--I havent been as lucky..)

Good luck..!
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