ENTEROCUTANEOUS FISTULA

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smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/30/2010 12:10 AM (GMT -7)   
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.
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 3/30/2010 7:55 AM (GMT -7)   
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!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 3/30/2010 10:51 AM (GMT -7)   
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
Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort.  Will have a "redo" resection on April 6.


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 3/31/2010 3:48 PM (GMT -7)   
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.
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


aronk
Regular Member


Date Joined Jun 2006
Total Posts : 229
   Posted 4/4/2010 3:52 PM (GMT -7)   
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. 

Angela 
Crohn's Disease for 18 years.. 1st Resection June 2009 still having trouble-anastomostic leak and now fistula.  Currently on Flagyl, Entocort.  Will have a "redo" resection on April 6.


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 4/4/2010 4:15 PM (GMT -7)   
Hello Angela! I'm glad it is over. Praying for a swift and complete recovery for you!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 4/4/2010 11:48 PM (GMT -7)   
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
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 6/19/2010 12:24 PM (GMT -7)   
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
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
 


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 6/19/2010 1:58 PM (GMT -7)   
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
Diagnosed with crohns at 13 now 43
Still battling with Doc's to get me on maintenance Meds only taking
Lomotil, 20mg citalopram,VSL#3 at the moment.

“I may not be where I need to be but,
I thank God I’m not where I use to be “


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 6/20/2010 1:20 PM (GMT -7)   
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.
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


CROHNSPT1993
Regular Member


Date Joined Feb 2010
Total Posts : 42
   Posted 6/20/2010 7:36 PM (GMT -7)   
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
Diagnosed with Crohn's Disease at 18, currently 33.
I have ileitis Crohn's Disease. 
I have had multiple CT guided abscess drains, surgical debridement for abscesses, reaccuring psoas abscesses and fistulas.
I have an enterocutaneous fistula and I'm currently waiting to have my second surgery (ileocecectomy)
I've had multiple blood transfusions and picc line antibiotics.
Meds: Imuran, zofran, ertapenem, zoloft.
 


smallgit
Regular Member


Date Joined Feb 2010
Total Posts : 29
   Posted 6/20/2010 10:38 PM (GMT -7)   
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
A survivor of CAPS - Catastrophic Antiphospholipid Syndrome with infarcts in one kidney, spleen, liver, and intestines in July '09

Surgeries: cholecystectomy, partial enterectomy x 2 with surgical complication of EC fistula
Meds: Lovenox daily subQ injections, Metoprolol for hi BP
Previous Meds: Ritoxan, Methotrexate, Plasmapheresis, innumerable blood transfusions, and antibiotics galore.


fitzycrohns
New Member


Date Joined Jun 2014
Total Posts : 1
   Posted 6/5/2014 1:25 PM (GMT -7)   
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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