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Enterocutaneous Fistula??

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Crohn's Disease
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Posted 12/8/2009 3:18 PM (GMT 0)
Has anyone had a fistula that drain out of your abdomen?  I think that is what I have going on now.  I'm seeing my surgeon in about an hour.  I had a JP drain removed 3 weeks ago and the site still has not healed and is now draining more goop. I'm having diarrhea about 10 times a day.
Posted 12/8/2009 4:40 PM (GMT 0)
Hi there...plz let us know what doc says and course of tx......take care...lyn
Posted 12/8/2009 5:44 PM (GMT 0)
I'm back. Surgeon didn't seem overly concerned. He stuck a tool into the hole and apparently it is healing, but slowly. It has closed up a little bit. He doesn't think it is draining biliary contents, so I'm to wait it out for a few more weeks. Hmmmmmm....
Posted 12/8/2009 6:49 PM (GMT 0)
I just had my abdomial fistula repaired on Nov 20th.
Posted 12/8/2009 7:15 PM (GMT 0)
MAG102886, please tell me more about your abdominal fistula. How did you get it, how long did you have it, how big was it?? What treatment options did they choose? I'm curious. You are the first person I have found that has a similar experience.
Posted 12/8/2009 11:56 PM (GMT 0)
had a huge one for 4 years.. i could put a 8inch q tip all the way in! it would squirt crap out like a hose.. it took me 4 years to find a surgeon that would attempt to fix it. and she did on the first try! changed my life .
Posted 12/9/2009 12:09 AM (GMT 0)
My Surgeon tried to have my enterocutaneous fistula heal many ways ie TPN meds etc but I finally had to have surgery to have it fixed since then no more fistulas at least that I am aware of
Posted 12/9/2009 1:29 AM (GMT 0)
DH has two abdominal fistulas. After 2004 resection with numerous complications, including a pulmonary embolism and a week in ICU, he had a hot red spot develop on abdomen. Surgeon put in a JP tube. The tube eventually fell out, but the fistula didn't heal. Then a second fistual developed about an inch from the first. Not much fun living with them, but surgeon doesn't want to operate on him again. He genuinely feels DH would be worse off than now, if he did. Some days the fistulas put out up to 900 ml of stool, other days not much drainage at all. They are definiately a bummer!

Certainly hope your fistula heals!
Posted 12/12/2009 12:29 PM (GMT 0)
My son had it 2 yrs. ago. At first we were told that he had an abdominal abscess which was lanced, but not drained from the inside. He was sent home from the hospital and told that it would be healing soon. Instead, the drainage was more and more, and had a smell. Went to the same hospital were they told us that a fistula had developed. Sent home again with antibiotics, and told that the fistula would heal. We decide to seek another opinion, because the fistula was not healing. Went to Mount Sinai hospital here in NYC, he had surgery, the fistula was removed together with a piece of the colon. The doctor that performed the operation, said that he never saw such a mess !! we made a wise decision in seeking a 2nd. opinion. It has been 2 yrs. since the operation and his diagnose of Crohn's disease. Thank God, all is well.  I hope that this post would help!

 Please see a second opinion.

Posted 12/13/2009 3:46 PM (GMT 0)
Hi Aronk. I had mine operated on in Jan 09 it still leaks a bit but not poop just a mucky yellow colour. Can you not ask the doc about putting you on Remicade I went on this and it actually healed a small fistula that came up after the op unfortunately i had a reaction on 2nd dose so had to come off it. It would be worth a try. Bev x
Posted 12/21/2009 8:18 PM (GMT 0)
Hi jrjr43, iam able to get away with a dressing now, used to use a pediatric stoma bag which was very thin and light but was capable of holding fluid i think the only other option is thick swabs that depending on the amount of drainage which you may need to change regularly Bev x . wink
Posted 12/22/2009 1:25 AM (GMT 0)
jrjr43...I think DH and I are all too familar with your situation. DH's stomach looks like a road map with scars, peaks and valleys. He uses primarily Hollister ostomy supplies that we cut/alter to fill in and level out areas of his stomach so we can get the flange to last about 36 hours generally. I would advise you to have your GI make an appointment with an ostomy nurse to help you determine what would work best for you. But in all honestly, after seeing 3-4 ostomy nurses, we had to basically work it out for ourselves. There are also wound pouches available but we were advised against using those because of the amount of drainage DH has. Good luck and if we can be of any help please let us know!
Posted 12/22/2009 3:08 AM (GMT 0)
Aronk

Sorry I didn't respond sooner, I haven't been on the forums much in the last week or so.

My fistula was a result of a resection, my incision got infected and abscessed twice, I was then left with an open wound  and given a wound VAC.  I had that for about 2 months, I had a follow up with my GI and he said the wound looked good enough to do wet/dry dressings, so I started that. A couple weeks later I noticed the smell and color of the drainage changed, and ta-da a fistula!

I had surgery to repair it on Nov 20th, after a year of dealing with it. I currently have an open wound and VAC...hoping history doesn't repeat itself.

Posted 12/22/2009 4:57 PM (GMT 0)
Jrjr, do you get your supplies from a medical supply store? If so look for dressing covers, its like a clear plastic sheet, you place it over your wound/whatever, then peel back the top layer, it leaves a thin plastic covering over it. If you can't find them I would call you GI and request that they help you figure something out.

Having a fistula leak hits home for me, especially being a young girl....I had way too many "accidents" with mine leaking through, and through my clothes.....at work, on my bed sheets,  out with my boyfried....UGH

Posted 2/9/2010 9:28 PM (GMT 0)
HI EVERYONE IM NEW TO THIS WHOLE FORUM THING. SO BARE WITH ME. I HAVE READ ALL RESPONSES TO THIS TOPIC BECAUSE I TOO HAVE A ENTEROCUTANEOUS FISTULA. ITS LOCATED ON THE LOWER RT QUADRANT OF MY ABDOMEN. IT LIES JUST BELOW THE CREST OF THE HIP BONE. THE SURGEON WHO DID MY DEBRIDEMENT (ABSCESS CLEAN UP) STATED THE FISTULA WAS NOTHING TO WORRY about AND THAT IT WOULD CLOSE UP ON ITS OWN. HE TOLD ME THIS AT MY FOLLOW UP APPT. SINCE THAT APPOINTMENT THE openING OF THE FISTULA HAS DECREASED IN SIZE AND THEN TURNED AROUND AND INCREASED IN SIZE. THE OUTPUT MATCHING THE SIZE. SMALLER HOLE LESS DRAINAGE AND VICE VERSA. THE FLUID THAT LEAKS IS YELLOW STICKY AND ODORLESS. AT TIMES THERE WILL BE TINY SPECS OF DARK BROWN IN THE FLUID, ONE OR TWO SPECS ONCE IN A GREAT WHILE.  I GUESS IM WONDERING WHAT TO EXPECT WITH THIS FISTULA. DO THEY ACTUALLY CLOSE ON THERE OWN? IS IT NORMAL FOR IT TO CHANGE SIZE AT THE openING? I TOOK PHOTOS OF EACH STAGE THIS FISTULA HAS GONE THROUGH.  DOES ANYONE KNOW WHAT KIND OF FLUID IT IS THAT LEAKS OUT? MY SURGEON SAID ITS INTERSTITIAL FLUID (CELLULAR FLUID). DOES THAT SEEM RIGHT? IS THIS SOMETHING I JUST HAVE TO LIVE WITH OR WILL IT GO AWAY AFTER MY SURGERY? (IM HAVING A ILEOCECECTOMY WITHIN THE NEXT 3-6 MONTHS. I HAVE A MILLION QUESTIONS, BUT IM DRAWING A BLANK RIGHT NOW. I WILL POST AGAIN AS SOON AS I GET SOME MORE THINGS TOGETHER. THANKS FOR READING. PLEASE RESPOND ANYTIME. 
Posted 2/9/2010 10:16 PM (GMT 0)
I personally have never heard of a fistula closing on its own.  They are usually closed with medication or surgery.  When I had mine the hole started about the size of a golf ball (I have a pic of that) and eventually it was down to about the diameter of a pencil. It got a little bit bigger and smaller randomly, I think it was because of me packing it loose or tight though. I had surgery to repair mine on Nov 20th after surgery I was left with an open wound, and given a wound VAC again...I now have the VAC off but have a hole the diameter of a pencil, and about 2 cm deep...so in other words I'm in the same boat but don't have the drainage, hopefully it will close on it's own now, it's been the same for a little over a month now.
Posted 2/9/2010 11:03 PM (GMT 0)
DOES THE WOUND VAC HURT? OR UNCOMFORTABLE? IS IT HARD TO HIDE?
Posted 2/9/2010 11:05 PM (GMT 0)
My perianal abscess ruptured in september and continued to drain for a month. Then it sealed over and became a hard lump for another month. It started draining again, but then I had a fistulotomy done in December and they said it was a fistula to the rectum. They gave me flagyl again and it healed over once again.

It doesn't hurt or drain much at all anymore, but it's still there feeling hard. I was supposed to have a surgical consultation, but I left the clinic without seeing the guy because I figured a three hour wait was enough. I haven't been back since.

I told my GI the first time I met her in December that I thought I had a fistula, but that it had healed itself and she laughed. But when she saw and felt it, she believed me. She wanted me to go on remicade, but the HMO rejected it and so now I am on lialda.

Since the abscess/fistula? wasn't draining before and it's not really draining now, how do I know if anything is getting better?

If this thing doesn't hurt or impact my quality of life, can't I just leave it well enough alone?

I'm terrified of surgery. I just had my wisdom teeth pulled out on the 28th and I'm still recovering. My mouth is a mess of canker sores and I'm a teacher, so I wish I hadn't done this surgery.

I just can't see myself recovering quickly from whatever it is they plan to do to me. Also, the wait for a surgery appointment is at least a month and I would have to go back to the same place that kept me waiting for 3 hours.

It doesn't make sense and I know it's an insult to those who are really suffering, but I wish my Crohn's was worse than it is. Maybe then I would give up trying for a normal life and just accept the fact that I am sick once and for all.

Posted 2/9/2010 11:08 PM (GMT 0)
The wound VAC did not hurt me at all.  It's just a  tube with a sticker on the end that they place over the wound that tube is about 2-3 feet long and connects to the VAC its about the size of a shoe box. When I would go out I would take my big purse and throw the VAC part in my purse...you couldn't tell I had it.  It was at times uncomfortable though, and it does make a constant suction noise, not loud but if you were in a quiet room alone.....like trying to sleep you can hear it for sure. Oh and the VAC part is in a small bag/carrying case that is black and it has a strap to wear on your shoulder.
Posted 2/9/2010 11:18 PM (GMT 0)
I KNOW SOMEONE THAT HAS THE SAME SITUATION AS U AND SHE JUST LETS IT DO ITS THING. SHE DECIDED WHY MESS WITH SOMETHING THAT TAKES CARE OF ITSELF. SOMETIMES HER PERIANAL FISTULA openS AND DRAINS AND SOMETIMES ITS CLOSED FOR MONTHS. YOU KNOW YOUR BODY AND IF YOU HAVE A GUT FEELING THAT SOMETHING WILL GO AWRY THEN DONT DO IT. JUST KEEP AN EYE ON THINGS MAKE SURE YOU DONT GET INFECTED. OR TRY SEEING SOMEONE ELSE. OTHER DOCTORS HAVE OTHER IDEAS. SOME WILL PROMOTE LEAVING IT ALONE AND HAND YOU POINTERS TO MAKING SURE ALL IS WELL WHILE LEAVING IT TO DO ITS THING. THE BODY IS AN AMAZING STRUCTURE IT ALWAYS SEEMS TO FIND WAYS TO FIX ITSELF WITHOUT MEDICINE. GOOD LUCK.
Posted 2/9/2010 11:21 PM (GMT 0)
TO MAG DO U THINK THAT VAC WORKS? DID IT WORK FOR YOU? HOW LONG HAVE YOU BEEN DEALING WITH YOUR FISTULA?
Posted 2/9/2010 11:50 PM (GMT 0)
I still have my fistula too.  It's been 8 months since my resection and a little more than 3 months since the drain has been out.  The weird thing for me is every month when I start my period, the hole closes.  It's happened three month in a row now.  A few days into my period--it abscesses and reopens.  Right now it's closed and doing well.  I'm cautiously optimistic that this may be the time that it doesn't reopen.  Of course, then there is the thought that I might develop an intra-abdominal abscess if the area hasn't healed.  I do have an appointment with a new surgeon on Feb. 17--just to make sure someone else agrees with the treatment plan.  My fistula is pretty tiny, but definitely changes size depending on the day.  Same with the drainage.

Posted 2/9/2010 11:56 PM (GMT 0)
THAT IS INTERESTING. I HAVE HEARD THE BODY GOES INTO REMISSION FOR WOMEN WHEN THEY ARE PREGNANT AS WELL. HAVING YOUR PERIOD IS GIVING YOUR BODY A FALSE SENSE OF PREGNANCY, THEN WHEN IT REALIZES YOUR NOT PREGNANT IT openS BACK UP. HOW NICE HUH?
Posted 2/10/2010 2:14 AM (GMT 0)
When I was pregnant with both of my girls I had absolutely no problem with my Crohn's!
Posted 3/1/2010 9:56 PM (GMT 0)
to whoever was asking about the wound-VAC...It may not have hurt MAG, but it MAY be painful to some...My doctor/ostomy nurse attempted a wound vac with me on two separate occasions: once while I was still in the hospital, about 2 months post-op and the second time was when I was readmitted to the hospital this last December, 5 months post-op. The first time wasn't as painful as it was uncomfortable, but I was also having a hard time being controlled with my blood thinner (heparin at the time), so the VAC just made me bleed instead. The second time I had the wound VAC, it was so painful that I had to take Dilaudid while they were trying it for a couple days ----NOT fun.

I had a partial enterectomy done in July -09 but my doctor doesn't want to do a surgery for the fistula until at least December of this year. He says that the surgeries that were done last year (both partial resections of infarcted intestines - I almost died, so I'm guessing that's why he's weary). this sucks.
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