I found this old post looking for anyone with an enterocutaneous (EC) fistula and will gladly chip in with my experience!
Akteacher, did the hyperbaric oxygen therapy work for you?
Peaches, did any of the treatments for your daughter worked?
I'm a J-poucher since 1992 and have had a great run until 2019 when I got a 2" skin abscess by the old stoma...after having it lanced it kept building up pus and forming a "new abscess" so I maintained it by draining it 2-3 times daily. It's low output with 1-2 ml draining everyday...no fecal matters, just a mix of yellow pus and blood. So it's been over 3.5 years since it was lanced and I have yet to have it officially diagnosed as a fistula as none of the MRI, CT-Scan and US to abdomen I had done revealed it. Yet, I feel a tubular shape connected to the skin - by the old stoma -...As for a fistulogram, would it even be feasible to insert liquid in a pin size hole?
In any case, I'm pretty confident that I have an EC that's linking my j-pouch to skin on my abdomen. I'm not taking any medications, I eat well and lead an active life at 49 years old. So, as far as complications, I've had very little. Like I said the output is so little and the fistula seems so stable that even my GI advised to leave it alone. My concern is that I could potentially get sepsis while swimming in a lake - which I have yet to do since...- or using my hot tub - water chemistry very well maintained - yet, I won't do any water related activity without covering the fistula entry with gauze and waterproof tape ...Again, no complications there except for more acute tenderness and redness at times... Still I'm always worried about a looming sepsis...
I take great care to it, shaving surrounding hair and keeping it clean regularly and I'm not using any bandages.
What do you think? Can I continue to live with this fistula without medications or surgery for the rest of my live?