Fistula in Ano - Pouch advancement surgery

Hi Everyone, it is my first time posting here. I have used this forum as support and it is good to know that we are not alone in our struggles. I’m looking for advice, maybe some of you have been through what I am going through. 

 

I was was diagnosed with ulcerative colitis at age 5, went into remission, and then at age 13 got hit hard eventually leading to total colectomy and J pouch creation. (It was done in 3 steps)

everything was fine after that for 13 years until I developed an abscess which turned out to be a fistula. The fistula has its internal opening at the site of my anastomosis with my pouch. There was some inflammation (no confirmed Crohn’s) seen when inspected under anesthesia but my pouchoscopies are looking clean. 

Drs are suggesting pouch advancement surgery but they are saying they may not be able to do the surgery transanally and may have to open me up anteriorly again. They have also notified me of a chance of pelvic nerve damage which would affect my sexual function. 

Has anyone been through anything like this? 

Original Post

Hi there, sorry to hear you are dealing with this. I also have a fistula.  I have a diverted pouch. My doctor is suggesting that the presence of a fistula suggests crohns. I'm not sure what others think about that. My surgeon has suggested we could try a pouch advancement, as an alternative to full pouch removal. I have to say I am leaning toward pouch removal. We all have different issues and quality of life tolerance thresholds.  So its difficult to compare. If you are not at all considering pouch removal, then advancement could be a reasonable option. That's difficult to be advised of nerve damage of that nature - I cant help you there I am sorry - I hope others here can. Its concerning though. 

Who, this sounds like what my son is dealing with, for the second time.  The inflammation is so high in your body.  I am not sure where you are from but something that was done for my son was a biological plug.  It is not a common procedure but in our case, it worked for the first leak.  My son has exactly what you are describing.  An abscess, no visible fistula, but trust me, it’s there.  We are on round two.  They drained the abscess a few weeks ago and he will have a pouchoscopy shortly.  If the fistula is there, they are planning on the biological plug.  It is a custom made device that is inserted by interventional radiology.  It then gets absorbed by the body and seals up the leak.   We are treated at Weill Cornell in NYC.   Two years ago, my son was only the 13th patient at their center to have this procedure.  If you want additional information PM me and I will be happy to give you further details.  

Add Reply

Likes (0)
Copyright © 2015 The J-Pouch Group. All rights reserved.
×
×
×
×