can u beat my record for peri-anal fistulas? You could win a prize!!!

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chubbaluv
Regular Member


Date Joined Apr 2004
Total Posts : 41
   Posted 11/17/2007 9:25 PM (GMT -7)   
I just had my 4th one and it's my 3rd drain installation in 3 years.  Actually I would say my 3rd one never went away as I had thought (if I have to determine a tie-breaker.)  I'm just kidding because I'm sure many others have had more than me or none at all.  I'm just feeling fiesty tonight to bring up the topic and just a wee bit sorry for myself.
 
How do you deal with living this way if you have had them? 
They slow me down as this disease does as a whole but the discomfort,  EMBARASSMENT (how do you explain to your family/friends/co-workers you are getting a drain in your ass?) pain (helllooo Tylenol 3 is my friend right now!) 
 
Have you found any way of preventing them/heading them off besides soaking?
 
This last one I have now was starting to "branch upward" into another tunnel and the internal pain was worse than the external pain this go around.  And my recovery has taken longer, maybe because I'm more impatient, I don't know.  {sigh}
 
 

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 11/17/2007 10:46 PM (GMT -7)   
Ahhh, well, I never counted them but I had numerous fistulas, rectovaginal, perianal, and pelvice floor all at the same time. It hurt a lot, lol. I didn't deal with them for very long, never had a drain, I had a temporary ostomy to divert the stool and give my rectum a rest, was never given any other options. Not a surgery many doctors give as an option anymore, but it worked for me and I never had it reversed. I prefer a pouch to incontinence, pain, and yes, getting a drain in my ass (or anywhere else down there).
Judy
Crohn's Disease   
Too many surgeries, ileostomy6MP for maintenance.
 
 


rkilcher25
Regular Member


Date Joined Jul 2006
Total Posts : 144
   Posted 11/18/2007 8:32 AM (GMT -7)   
ahh i'm close to you.  I've had 3 fistula's 3 surgeries and about to have number 4 surgery on it.  They suck so bad and yes it's hurts down there (i too have a seton in right now).  the drainage and just that thing being there is embrassing.  hopefully this surgery will be my last and i will never get another one but for me that's wishful thinking.  =]

26 years old
dx with crohn's at 23
Fistula seton surgery 2006
Advancment Rectal Flap surgery 2007
Fisula seton surgery 2007
 
 


Jen77
Veteran Member


Date Joined Mar 2006
Total Posts : 2691
   Posted 11/18/2007 12:59 PM (GMT -7)   
Heck no, I've only had the one, and it was MORE then enough! Sorry your having to deal with these, I know they are NO fun.
~Jennifer
 
Diagnosed with mild Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Asacol and Questran.


dodgegirl
Regular Member


Date Joined Mar 2005
Total Posts : 35
   Posted 11/18/2007 1:11 PM (GMT -7)   
Several abscess, just 1 fistula that does not want to go away. I have had it now for almost 10 months with constant stool flowing through it. I am being told to be patient and give it time to heal but I don't think it is going to and getting very frustrated. I was also told to think about a temp colostomy to give everything a rest down there but I am not so sure about that yet. It doesn't hurt all the time but the stool is going through constantly and there are times I have to manipulate it out (gross I know) just to make sure nothing gets backed up in it. mad My days are spent in and out of the bathtub after every BM (which could be anywhere from 5 or 10 or even more times daily) My surgeon even released me and said to give it time and be PATIENT!!!!!! Does anyone else have this problem with the stool flowing through theirs???????
 
______________________
 
Lisa


ConsideringABag
Regular Member


Date Joined Aug 2007
Total Posts : 65
   Posted 11/18/2007 1:19 PM (GMT -7)   
I can empathize with those of you who had perianal (or Any kind, they are all horrendous!) fistulas.

I had a bad perianal one that turned into a Huge abscess (the surgeon said it was the largest abscess he had ever seen-yay for me. :P )

My question for chubbaluv: Have you tried Remicade (infliximab) ? They did not think my fistula would heal up quickly (they actually thought it would likely reappear...) however, after I went on Remicade, it healed up in, I don't know, 4-6 months or so, and has stayed shut for over 7 years now! I also have not had Any other fistulas since being on Remicade.

Just curious, wanted to share my solution!

rkilcher, dodgegirl and chubbaluv, I truly hope your fistulas heal shut and Stay shut very soon! I have only had ONE, and it was truly the worst Crohn's-related experience I have ever had. You both I am sure are very tough/strong people!!





:-) :-) :-)

dodgegirl
Regular Member


Date Joined Mar 2005
Total Posts : 35
   Posted 11/18/2007 1:28 PM (GMT -7)   
I have been on Remicade now for 3 years and still getting the abscesses and the fistula. I am now on the maximum dose which keeps everything else in check but as the Remicade wears off I start to have problems and then when I can't get my remicade due to an abscess/infection or whatever, then everything spirals out of control and I end up in the hospital. This last round of Remicade I had to wait 3 weeks after my due date to get it because of another abscess along with fever and my GI wouldn't let me get it. He put me on Flagyl and Levaquin and I ended up getting the abscess to break open and drain and my fever broke so then I was allowed to get my Remicade after all that.
 
______________________
 
Lisa


dragonfly137927
Veteran Member


Date Joined Sep 2006
Total Posts : 2527
   Posted 11/18/2007 2:00 PM (GMT -7)   
Ihave never had a perianal fistula but I had an internal one they found when they went in to operate on my perforated ileum it went intestine to intestine. After 3 surgeries this year all CD related I now have an enterocutaneous fistula at the umbilical area at my incision line. I am on TPN to tr to help heal it and limited clear liquids. I have Dilaudid for pain and while in the hospital this last time they added Fentanyl patches back in the mix but I had them cut down at each application so I could return to work and drive only to have work tell me sorry you missed a week we let you go (I worked for the hospital that I was hospitalized in!)
Dx with Crohn's 1987, symptoms as early as 1984.
Temp iliostomy February 2007, reversed June 2007, Ovarian cysts, migraines, allergies (incl food allergies) , oral allergy syndrome (diff than true food allergies), Asthma, Gall Bladder removed 1999, Inguenal hernia 1987
 
 
 


chubbaluv
Regular Member


Date Joined Apr 2004
Total Posts : 41
   Posted 11/18/2007 2:09 PM (GMT -7)   
Unfortunately I had a Remicade treatment ONCE 6 years ago before they knew that you needed to repeatedly receive treatment with Remicade or you would develop immunity to it.  So Remicade isn't an option for me to try unfortunately.  :(
 
I don't have stool passing thru mine, just puss, so I should consider myself lucky.
How do you manually have to take care of that, by just soaking?
 
Plus I read an old post of someone who had or has 5 at one time?????? 
I literally cried for that person while I was soaking in the tub and was wondering what is in store for me down the road with this disease.
 
Let's take a poll of how many of us cry in the bathtub?  Yep, best place to have my own personal pity party.  That and my car when no one is with me.
 
Also, how do you function with your job/life when you have to be in the tub 6-10x's per day?  My parents live 10 minutes from my office so I can go and soak in their tub throughout the day if I need to, luckily I own my own company so I can come and go when I need to, but I would be FIRED for as much time off that I've had to take with this flare up if I wasn't self-employed. 
 
My 3 kids at home have been VERY patient and understanding that mommy can't go to the pumpkin farm or the corn maze with them with porta-potties this year.  Can you imagine sitting in a porta-potty with a drain in your ass and D?  Now I'm getting gross, sorry!
 
 
 

dodgegirl
Regular Member


Date Joined Mar 2005
Total Posts : 35
   Posted 11/18/2007 3:10 PM (GMT -7)   
chubbaluv said...
 
I don't have stool passing thru mine, just puss, so I should consider myself lucky.
How do you manually have to take care of that, by just soaking?
 
Plus I read an old post of someone who had or has 5 at one time?????? 
I literally cried for that person while I was soaking in the tub and was wondering what is in store for me down the road with this disease.
 
Let's take a poll of how many of us cry in the bathtub?  Yep, best place to have my own personal pity party.  That and my car when no one is with me.
 
Also, how do you function with your job/life when you have to be in the tub 6-10x's per day?  My parents live 10 minutes from my office so I can go and soak in their tub throughout the day if I need to, luckily I own my own company so I can come and go when I need to, but I would be FIRED for as much time off that I've had to take with this flare up if I wasn't self-employed. 
 
My 3 kids at home have been VERY patient and understanding that mommy can't go to the pumpkin farm or the corn maze with them with porta-potties this year.  Can you imagine sitting in a porta-potty with a drain in your ass and D?  Now I'm getting gross, sorry!
 
 
 

I actually kinda massage by bottom where the fistula is and it helps move things through in the bathtub (here we go gross again). So far it works. As far as functioning job/life etc; I am lucky that I work at home doing medical transcription and don't have to leave the house. As for anything else I actually don't leave my house too often which does suck sometimes especially since my hobby/pasttime/stress relief is offroading in my truck and usually that entails 3-5 hour trips and camping. I did get to go wheeling once this year over the 4th of July; but that took a lot of Imodium, some pain pills and sneaking in the only shower at the campground that had somewhat of a door on it and I could actually let the water fill a couple inches so I could soak (that was real fun) and hope noone noticed I was trying to sit down in the shower. tongue All in all that week went okay until the last day and I was just glad to make it home.

I also worked at a hospital for over 13 years. I was diagnosed when I first hired there and they kept my job for me. I even quit in 1996 when my daughter was born but they asked me to come back later that year and gave me all my seniority, disability and insurance back as if I never left. My Crohn's was in remission for almost 10 years. I then started having problems in 2003 with the abscesses and went on Remicade and everything went downhill from there. My father passed away unexpectedly in March 2004, I was fired in May 2004, fought for unemployment for the next year and WON, hospitalized in June and then a couple more times before the end of the year, my mom was diagnosed with breast cancer the end of that year, I was hospitalized for 2 weeks the following May for a pretty good sized internal abscess that they decided to try and drain twice which didn't work and then returned back to the hospital in June to have my first surgery on the abscess, and now fast forward to January 2007 the abscess was returning again, went in for surgery Feb, got an infection return 10 days later for another surgery and SUPRISE now it is a fistula. I don't ever want to go through that again. The pain was unbearable and believe me I have cried more than I care to admit over this thing. Oh, and in between all that after I lost my job and spent so much time fighting for my unemployment, with no money coming in, we lost our house and had to move also. When it rains it pours!!!! Sorry to rant, will stop now.

 

 

 


 
______________________
 
Lisa


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 11/18/2007 6:56 PM (GMT -7)   
I have/had 3 confirmed ones. One has a seton in it. The other two have healed.

How do I deal with them....I try not to let much stop me.....My kids are only going to be young once, so I haven't let much stop me from doing things with them. I also work 3 days a week. Yes, they are a pain, but I always think that it could be worse!

chubbaluv
Regular Member


Date Joined Apr 2004
Total Posts : 41
   Posted 11/18/2007 8:16 PM (GMT -7)   

Rant away Dodge Girl!  Holy cow.  I'm so sorry to hear about all you have been through. 

I've been trying to focus on the positives today.  Things could be worse.  This disease is in no way a fun time but as I tried to explain to my kids, if I take care of myself it is not going to kill me.  It isn't a death sentence but a HUGE inconvenience.  I'm grateful for the fact I have kids, a supportive husband and family/friends.  I just couldn't get the thought of four other drains in my butt out of my head today along with the one I already have, so I'm counting my blessings all over the place. 

This forum is truly wonderful because NO ONE knows what it is like to suffer with this disease unless they have it.  So I'm grateful for it and all of you as well.
 
I get gross, and then I get mushy and sentimental all in one posting.
Maybe my drain is effecting my brain!!!!!!

dodgegirl
Regular Member


Date Joined Mar 2005
Total Posts : 35
   Posted 11/18/2007 8:19 PM (GMT -7)   
It actually felt pretty good to "rant" to other people that truly understand what this is like.
 
______________________
 
Lisa


cosmicsnail
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 11/25/2007 9:59 AM (GMT -7)   
Well, I've had my fistula for 5 years now. I say fistula, but I believe there are actually 3 there now. I've had over 10 operations over the past 5 years for them, they just won't heal. Had Remicade, didn't work. Tried Thalidomide, didn't work. I have a seton in one and the others are just left to their own devices. I have pain most days, but just have to get on with my life, I already lost one year where I had to defer from university when I first got sick, but apart from that I've not been out of action too much. I manage to work full time and got married last year!

ginger71
Veteran Member


Date Joined Nov 2005
Total Posts : 722
   Posted 11/25/2007 1:08 PM (GMT -7)   
No, but try to beat me in abscesses! LOL!
36 year old female. Dx'd and undx'd a few times. Was just redx'd again 04/2007.
History of rectal abscesses and fistulas (28 surgeries including abscess I & D, exploratory surgeries, 2 C-ton drains and 1 fistula plug) Count does not include self bursting abscesses.
1st Remicade infusion 6/5/07.  Lots of joint pain, and a new fistula since the 2nd infusion 6/19.
Praying I'll get better soon so we can have a baby.
Ginger :)

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