Skip to main content

Replies sorted oldest to newest

I've had two flap advancement surgeries, neither of which were successful. I am scheduled for a consult with Dr. Shen of the Cleveland Clinic in August to look at a new form of fistula closure...endoscopic and using clips. I don't know if I'm a good candidate but will meet with him.

I'm very hesitant to do anything that might make it worse. I tried Humira to see if it would close it even though all agreed that my UC diagnosis was accurate as opposed to Crohn's. We (doc and I) felt we had to try. It was, for me, very unfortunate in that I had a bad reaction involving nerve damage. I only had one dose so I can't really say if it would have helped the fistula.

I do find if I keep the stool thick it doesn't leak as much. I use quite a bit of psyllium to that end. How active is your fistula? Do you have Crohn's? 

I'm curious if anyone has had the Cleveland Clinic procedure. 

Hi PAMMIESKRH.  I currently have an anal fistula that has a drain (Seton) in it.  The fistula came up about 3 months ago.  This caused my doc to want to do a scope and he found allot of inflammation in the pouch as well as in my small intestine which resulted in a "Chrohn's like" diagnosis for me.  They have since put me on Entocort as well as the first infusion of Stelara.  I feel better now than I have since I had my takedown in 2014.  That being said they would not close the fistula due to the inflammation.  So the Seton stays in until September when they will finally do the surgery to close the fistula.  It was explained to me like this,  to put the Seton drain in he ran a metal rod through the fistula to make a single passageway, at which time he placed a band around to hold it open and allow it to drain any infection out.  It has not drained in 3 weeks now.  Basically he said the procedure to remove the Seton and correct the fistula is as simple as "cutting a ditch".  So they will make and incision where the band currently is and allow the wound to heal.  That's it.  I know it will not be pleasant due to the location but I want it fixed.  The other alternative is the Seton drain,  but they tighten the band in increments until it basically cuts all the way through and accomplishes the same thing.  Some people can't have the surgery due to the location of where the fistula came out.  If there is too much muscle between the fistula location and your anus,  they won't do surgery.

I literally came here to ask for advice on this!  I don’t know where else to turn, issues started in feb and I thought it was my coil, backwards and forwards to the doctor, they thought there had been s cyst but there was a hole so it must have drained itself. Ongoing pain and discomfort, finally a trip to a sexual health clinic and the doctor there mentioned a possibility of a fistula. If all makes so much sense but I still have to wait another 3weekd before I can even be seen by my surgeons team let alone treatment. I don’t know how I’m going to make it st the moment, I’m so beaten down 😔

I'm sorry to hear you may have a pouch/vaginal fistula Pammieskrh. I know too well how trying it can be. But there may well be solutions that work well for you. I gave a brief version of my history above. I have since been to the Cleveland Clinic but, because my fistula is too low, it wouldn't work for me.

It will take time for you to know for sure if it's a fistula and then more time to figure out the best route to take. But there are things that can be done. The ideas presented to me were:

The endoscopic clip by Dr. Shen (now in NY apparently);  a graclilis muscle procedure (where they actually insert a muscle between the pouch and the vagina; a diverting ileostomy ; experimental stem cell treatment for fistulas being studied by a doctor at Cleveland Clinic (Dr. Lightner); advance flap surgery, pouch redo.

At this point I've chosen to stay with the status quo and try to keep the stool thicker to prevent leakage. It seems to be active for me every few weeks. I'm not eligible for the clip or stem cell, the flap advancement didn't work for me, and it's not yet bad enough to want to undergo major surgery (gracilis or pouch redo) nor give up the pouch completely.

I really do wish you well through this and encourage you to try to be patient and hopeful!

 

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×