Share Facebook



02-23-2014, 11:32 PM   #1
So Worried
 
Join Date: Feb 2014
Location: Michigan
Enterocutaneous Fistula

My darling husband can't eat due to pain from this. He doesn't have Crohn's but got this after colon surgery. It's almost 2 years now. Anyone with experience in this and how you got better? Thank you.
02-24-2014, 05:01 AM   #2
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
I had an Enterocutaneous fistula on my stomach for almost a year following surgery in February 2013. I recently had mine surgically removed as it was causing me a lot of problems, it would stop outputting, heal up for a few months and then randomly burst again.

Some fistulae can be healed using biologic medications, like infliximab, but that wasn't an option for me unfortunately and I guess if he doesn't have Crohn's it may not be appropriate for him either.

Has he had scans to show where the fistula tract goes? If he hasn't it's a good idea to get an MRI or CT scan done and to see a gastroenterologist or colorectal surgeon. If he's had it for two years it is probably quite unlikely that it is going to heal up on its own.

I'm concerned that he's getting so much pain from it, whereabouts is the opening of the fistula (if you don't mind me asking?)

Don't lose hope, there are things that can be done, but getting specialist help is really important.


__________________
Lucinda x

Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
02-24-2014, 11:40 AM   #3
So Worried
 
Join Date: Feb 2014
Location: Michigan
thank you so much for answering. He has had several ct scans at the end of last year. His is in the peritoneum from the colon I guess... he's lost so much weight, approx. 40-50 lbs and is so weak and in pain. The surgeon we talked to said it would be very dangerous for him to have the surgery. I'm in such panic mode. He hardly eats knowing how much pain it will cause. (he has a wound/hole in his stomach with a gauze over it because fluid seeps out)

He had a surgery to clean up/ suck out all the fluid last fall. His colon resection was almost 2 yrs ago and that's what caused this. I'm terrified anymore.
02-24-2014, 11:48 AM   #4
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
I'm so sorry to hear that you're both having such a difficult time. They are tricky to sort out, but can be dealt with.

Have they given you a reason why he can't have surgery? Is it because he had one recently? I had to wait a year between surgeries to lessen the risks.

If he is finding that the output from the fistula is making a mess, he could look at using a Stoma bag or wound drainage bag over the hole. That's what I did and it made it a lot easier to deal with as the output collects in there and can either be drained into the toilet or just disposed of when the bag is changed.

Could he maybe try a liquid diet or TPN, so that he can get some nutrition in his system?


02-24-2014, 12:26 PM   #5
pink&green
Senior Member
 
pink&green's Avatar
Sorry to hear you & your hubby are having a hard time sending your way. I like what Absentminded suggested.
__________________
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)

LeeLee
02-24-2014, 04:39 PM   #6
So Worried
 
Join Date: Feb 2014
Location: Michigan
The surgeon said that some people just live like this (with the fluid, etc.) My husband's fluid is very little now, but the probably is the bad pain he's in. After the surgeon said that people live like this sometimes, I said, "We can see living with the fluid, etc, but do all these people have so much pain? Why does he have so much pain?" And the surgeon 3 x's answered...Hmmmmm. So that leads me to believe he does not know why my husband has pain. Do you all have pain when you eat? Or just pain period, all the time, 24-7? Thank you so much.
02-24-2014, 04:52 PM   #7
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
Yes, my surgeon said that too, that people do just live with them.

I did have pain with mine. I don't know how to explain it! Umm, it was similar to the pain I've had post surgery, a really deep, draining pain. I couldn't use my stomach muscles to sit up and coughing and sneezing was agony, like post surgery. My surgeon said the pain was probably due to food pushing through such a small tunnel, my MRI scans initially showed that the fistula tract was absolutely minuscule.

I can't say why your husband is getting so much pain, especially if he is hardly eating. Sounds like you may need a second opinion.

I had medium output from mine, between 60-160 ml a day. But I was told that if my output went over 300 ml I would need TPN as I'd be losing nutrition. It is good that your husband's output is low, I guess because his is lower down in his bowel?

You're very welcome. They're tricky, miserable things these fistulas. Sending you both my best wishes. X


02-24-2014, 05:13 PM   #8
So Worried
 
Join Date: Feb 2014
Location: Michigan
Thank you so much. What finally got rid of your pain? (if anything)

The Dr. said that the surgery could make things A LOT worse for him and he would highly suggest against it. So, I don't know This is our 2nd opinion Dr. already. The first one was not a colon surgeon, but general. We live in an area with not a lot of options for great Dr.'s. Does anyone out there know of any terrific fistula/colon Dr's in Michigan, IN, Ohio area?

I don't know if his is lower down in his bowel. I thought they said it was from his colon to his peritoneum. Then he has an incision in his right side stomach that the fluid drains from...with a gauze covering it. They DID say at one point (somewhere along this very long road) that his fistula was REAL tiny. He's supposed to have a fistulagram but is leary on how painful that will be on top of his already pain.....
02-24-2014, 05:30 PM   #9
Absentminded
Forum Monitor
 
Absentminded's Avatar
 
Join Date: Nov 2009
Location: Bristol, United Kingdom
The pain did go away when the fistula began to heal up, but came back horrendously when it burst again and continued until I had my surgery to remove it.

It may be that the pain is partly due to output pushing through such a tiny tract, I don't know though as I'm not a doctor. I've never had a fistulagram, just MRIs and CT scans ( 6 CTs in 6 weeks, I'm not allowed any more for about 10 years apparently!)

I can't help with regard to Drs I'm afraid, what with me being in the UK.


02-25-2014, 08:14 AM   #10
Dejabu
 
Join Date: Aug 2013
Location: London, United Kingdom
Hello,

I currently have a fistula from the end of my small bowel (just before the colon begins) that is connected to the bottom of my abdomen/waistline. It causes me pain at different times of the day, sometimes there is very little pain, sometimes I need pain killers. The pain is hard to describe, it feels like a lot of pressure/burning when its at its worse and I cant even wear a pair of jeans because the pressure of the waistband pushing against that area of my stomach makes it worse. I have been having Infliximab infusions as well as azathioprine for the last 3 months but it has not helped the fistula. I will be having an operation to remove the inflamed piece of bowel and and fix the fistula.

I think it is acceptable to have some pain, given that there is an abnormal connection passing bowel contents through where they are not supposed to be passed through.
02-25-2014, 12:59 PM   #11
So Worried
 
Join Date: Feb 2014
Location: Michigan
Dear Dejabu,
Thank you so much for replying. I'm trying to gather as much info as I can. I wish you so, so much luck and many prayers for your surgery. Let us know when you're up and about.
Reply

Thread Tools


All times are GMT -5. The time now is 07:51 AM.
Copyright 2006-2017 Crohnsforum.com