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ENTEROCUTANEOUS FISTULA

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Posted 3/30/2010 2:10 AM (GMT -5)
I thought I'd start a fresh post on enterocutaneous fistulas being that I am forever wanting to know more about others' experiences and am getting flustered just searching :o(

I've an ECF in my lower abdomen about 3 inches below my belly button and I've had it since August of last year secondary to a surgical complication. The surgery was a partial resection of my small bowel, leaving behind just 3 feet of small intestine. Now the fistula is draining bilious fluid as well as stool. I have recently been taken off of TPN and am on a full solid diet --
height - 5'8"
weight - 125 -- not bad! I was 100 in the hospital last year...was in for 3 months - not fun.

I haven't had any treatment for my fistula and it is purely enterocutaneous...I don't know of any intraluminal connection, though, with my luck, it's always possible. I'm going in for a second opinion tomorrow for treating this thing since it's been so long already and my surgeon is battle-weary, so I'm hoping something will come of this appt tomorrow. ::fingers crossed:: I hope that by the time I get back, I get some comments/stories... fistulas STINK. Literally and figuratively.
Posted 3/30/2010 9:55 AM (GMT -5)
Wow Smallgit, it really sounds like you have been through a lot. You must be very strong!! Good for you!! I'm glad you are getting a second opinion and hopefully they will have a solution for you!

Take care!
Posted 3/30/2010 12:51 PM (GMT -5)
Hi smallbit--I too have an enterocutaneous fistula similar to yours, although, mine doesn't drain as much. Same situation as you--first resection surgery last year (Jun 09 for me) with complications to follow--abscesses etc.. and now the fistula. In my situation, I need surgery to fix the anastomotic leak which is causing all of my problems. I got a second opinion and will now be having my surgery at Barnes Jewish Hospital in St. Louis. I'm currently on 500mg of Flagyl and 9mg of Entocort per day. Every time I stop the Flagy, or try to taper the entocort to 6mg all of my pain and symptoms come back within 36 hours. With the meds, I'm extremely nauseous every day, but the symptoms are tolerable. Sooo, I'm having surgery this Thursday, April 1...UGH! It will be an open laparotomy this time, since it's a "re-do" resection. She will basically cut out the old anastomosis and build a new one. Fun stuff. Anyway, I'm hoping this will be the end of my issues for awhile anyway.

Get your second opinion. I would be willing to bet your fistula is from an anastomotic leak that won't heal on it's own.

Good luck!

Angela
Posted 3/31/2010 5:48 PM (GMT -5)
Angela,

Good luck to you, my friend...I hope everything goes well for you. I had an open laparotomy last year with the original surgery...it was done on July 30th, with a repeat resection done on July 31st. I had a massive resection done, though -- only have 90 cm left of my small intestine.
My second opinion doctor said that I cannot have surgery done until at least one year from my surgery (to allow for the inflammation of my previous surgery to come down)...after my surgery last year, i was on Salumedrol for a couple of months and then Methotrexate IM for a couple of months...I relapsed in december and was told I developed a second fistula at that time. I've mentioned this before, though: I don't have Crohn's ds. but I do have the issues that Crohn's patients have. My fistula is, indeed, most likely an anastomotic leak, as most postop fistulas usually are. Only thing that sucks is that I have to wait. I'm getting a third opinion at UCLA hopefully at some point in the near future...June 30th is when I start work so I want answers by then...

All the besties with your surgery, Angela. Let me know how it goes. You'll be in my thoughts.
Posted 4/4/2010 5:52 PM (GMT -5)
Smallgit-thank you... I'm 3 days post-op and still in a lot of pain.  I will likely go home tomorrow.  I know what you mean about the wait-it's terrible.  I'm hopig for a good recovery this time.  Will upate again tomorrow. 

Posted 4/4/2010 6:15 PM (GMT -5)
Hello Angela! I'm glad it is over. Praying for a swift and complete recovery for you!
Posted 4/5/2010 1:48 AM (GMT -5)
Angela,
good to hear that the surgery is done and over with. I will hope for a speedy recovery for you and NO MORE darn relapses! So frustrating, hey? As for the pain, my friend, I'm so very sorry to hear it...I hope they've got you high on dilaudid or something of the sort. I've had pain and it is not fun...
God bless, and good wishes sent your way,
V
Posted 6/19/2010 2:24 PM (GMT -5)
Smallgit!

I have been wondering how you've been. You dropped off there for a while! So I read that you are still dealing with your EC fistula. Me too. Mine has a pattern of healing and low output for a 3 week period and then it blasts open and hi output for a week to week and a half. I am so sick of living like this. I'm sure you are too. Let me know how you are and any new info you have on your condition.

Angela how did your surgery go?

xoxo

Posted 6/19/2010 3:58 PM (GMT -5)
Hey! smallgit I know how you feel I too have a enterocutaneous fistula in the same place you have. I had mine operated on last Jan although the surgeon wasn't particually happy about doing it as its quite challenging. Mine still drains but just like a greeny pus and not very much I can live with that as it doesn't make me dehydrated which it used to before they operated the output would nearly fill a stoma bag.
I would be intrested to hear what they say when you go for the second opinion Im not on any meds at the moment and that frustrates me and like yourself I have searched the net to find out about these fistula's hope all goes well with the appointment please let us know what the outcome was. take care Bev x
Posted 6/20/2010 3:20 PM (GMT -5)
Hey everyone, I promise I didn't disappear...I just lost my password!! :-P. So, some good news first: my fistula has pretty much closed up. For those of you that are pessimists, don't be!! It can happen. I've had nil drainage for the past three weeks. I'm not even covering the wound anymore. It's dried out. Now, the scar is a different story, but, frankly, my dears, I don give a darn about all that!! nd such great timing. I'm starting my internal medicine residency in one week. I am exactly eleven months post op. And it closed. Don't lose hope, everyone with an ECF...there's always a light at the end. Angela, how're u doing? And Bev, I hope the very best for u. PM me for any questions, anything.
Posted 6/20/2010 9:36 PM (GMT -5)
Smallgit! WOW your EC fistula closed up? That is awesome! Mine does that once in a while, and everytime I get my hopes up it opens up again. What meds are you on? What do you think contributed to the spontaneous closure? Please.... any info can help. Maybe if I do what your doing mine will close too. I am so happy for you, you definately deserve the turn around. I know you have been waiting so long to get back to your rotation. Wish I could say the same. I can't wait to get back to mine.

xoxo

Amy CROHNSPT1993

Posted 6/21/2010 12:38 AM (GMT -5)
Amy,

did you go to med school too? Either I've a terrible memory (which I do) and I forgot, or I just never knew! Anyway, send me your email, Amy. I'll email you and tell you everything. For now, really, I didn't do anything. They took out my picc in march and I started a full on regular diet afterward and that's that.

Oh I will say this much, for all you ladies out there. When I'm on my period, my fistula drains more. For EVERYONE who's got questions about increased drainage, Look out for that. Does the drainage increase evry three weeks around the same time as your period? I get diarrhea around that time, hence my increased ECF drainage. So my recent solution: I had a provera I jection. So no periods for three months. I may do it again in three months, dependig on my situation. I'm keeping my fingers crossed that things stay this way.

All the best, Amy. And for everyone else reading this, just email me at imedlvr@hot
ail.com. Take care!

V
Posted 6/5/2014 3:25 PM (GMT -5)
Hello - I know this is like 4 years later, but I was wondering if you could provide ALL details about healing your ECF... diet, meds, exercise routine, everything! I'm in about month 5, and I have got to heal my situation. I have an aggressive sort of Crohn's, and this was my third surgery ( perforation- life saving surgery 4yrs ago w/ illeostomy, ileostomy reversal 9 months later, fistual developed, fistual corrective resection last Dec, and now stuck with a fistula again! ). I've currently just on Flagyll/Humira, but hoping for some insight on what might have led to your fistula closure.
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