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Fistula

C Cate87Member

I had a total colectomy with j-pouch creation and temporary ileostomy in 2011 due to UC.  I had two reversals but had to get the ostomy back due to rectovaginal fistulas.  I had two surgical repairs for the fistula and both failed. I've been using my ileostomy since 2012 (still with the inner j-pouch).  I recently had an MRI and it showed no evidence of the fistula (doesn't mean it's not there or won't come back).  Now I'm going to meet with a surgeon to discuss takedown options again.  I'm in a new state with new doctors than my original 8 surgeries so maybe they have other options.  I'm nervous that if there really is no sign of the fistula and I do go through with the takedown, that the fistula will come back and I'll have to have ANOTHER surgery and ANOTHER ostomy.  I'm also nervous to use my j-pouch when it's just been sitting there for 5 years not being used...any thoughts/comments/ideas?

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LR Lindsey R.Member

I'm dealing with an awful fistula and can't take it anymore! My surgeon says I need to go back to temp ileo for it to heal. How bad was the surgery to reconnect the ileo? What was recovery like? The thought of another surgery scares me to death. Do you have any suggestions for things I could be doing on my own that may help? Thank you, Lindsey

JeffsmomJeffsmomMember

Lindsey my son went through the same thing he had his first surgery in 6/14.  Takedown 9/14. He had his second ostomy, a completely open surgery in 3/15.  He said the second time with the ostomy not so bad. The surgery was just as bad as the first 2. Its the same thing but in reverse. Its all difficult.  There really is nothing you can do. Its all hard. Im so sorry you are going through this. But depending in where and what the fistula is connected to, they dont clear up easily. Jeff's fistula was from his small intestine to a huge abscess in his pelvic cavity. Sorry i cant tell tou anything better than that. 

Dianne

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