Enterocutaneous or Colocutaneous Fistula occ

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Does anyone have experience with diagnosis Enterocutaneous or Colocutaneous Fistula occurs between the small intestine and the skin or the colon and the skin respectively.. i have been dealing with this almost 2 years and 3 unsuccessful syrgeries to repair the fistulas. I am looking to see another surgeon for a 2nd opinion before my 4th surgery in September. I have not had real food for almost 2 years because stool will then poor out of my abdomen i have also had over 25 picc lines do to infection of stool transfer on skin because of the amount of drainage the only way to not have drainage is literally nothing to drink not even ice chips and live off the tpn that also continuously grows yeast in my blood causing almost 1 year 9 mobths hospital admission and totaling 3 months at home...Any suggestions
 
I had a friend who had this difficulty. It is horrible; my heart goes out to you. I hope you will link up with a university GI department whose doctors will treat you successfully. Good luck and keep us informed.
 
There is a non-profit that treats women in third world countries with fistuals. The website is fistualfoundation.org. This might be a good place to ask for fistula experienced MDs in the United States as most of the African hospital staff are volunteers from the US. My heart goes out to you also. Wish you luck with your next surgery.
 
@Candaceangel
I can totally relate! I recently had a gastrojejunostomy (G/J feeding) tube removed. It has now been nearly 3 weeks and the stoma has not closed. I now have essentially a gastrocutaneous fistula. Everything that I eat or drink comes straight out the hole. The skin around the site got badly burned from the stomach acids. I've been putting barrier ointments on it and taking major doses of acid reducers and seems to be helping. But no change to the hole. I'm still working on GI follow-up to resolve the problem but hopefully sooner rather than later and hoping for a successful repair. I can only imagine what you've been going through. And TPN takes a toll on you too. Been there, done that. Sadly I have only that much to offer for fistulas.

However, with regards to PICC lines, I recommend asking your docs to put in an infusion port. It cuts down on all the repetitive poking for IVs and PICCs and provides a stable central line for intravenous access. They can take it out when your issue is resolved.

Additionally, though this is the first I've heard of fistulas, I do know that TPN is very high risk. Partly for exactly the complications that you are describing. That being said, have you and/or your docs considered a feeding tube instead? Far less risky and much better nutritional results. Plus, it would make the gut keep working, albeit it slow and steady which is good too. Maybe they could place it downstream from your fistulas so that you maybe would have less leaking out???

So sorry. Best wishes. Hang in there!!!
M
 
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