I had my jpouch diverted to end loop ileostomy in April '15 due to pouch failure that created a painful rectal/vaginal fistula at the recommendation of a surgeon at cc in Cleveland.  I couldn't function any longer so I agreed and asked them to do whatever they could to save my pouch and try and repair the fistula.  After the ileostomy surgery I really never got a complete explanation of how it would/could be repaired.  They scheduled me to come back in three months but have changed that now to six months.  I understand that the tissue needs to heal and that the first repair attempt in the most crucial. They have been very evasive to my questions and basically just told me I was really really sick and that I just needed to heal.  I was told to not stress, take up yoga and try to accept the ileostomy for the meantime.  Also, the NP told me that fistulas are the most complicated problem they face.  They are very difficult to repair.  I feel like they want me to keep the ileostomy and forget about repairing the fistula.  I had a seton drain for about a month and had it removed because it was so painful and the doc said the area looked dry.  Now the pain is coming back and drainage is heavier. Any success stories in the U.S.?  The Mayo in Florida performed my first jpouch surgery and cc said it looked odd shaped.  I've been to two of the best I thought?  I've read some good things about Dr. Beck in Loiusiana.
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My fistula is perianal, not RV. However, my surgeon won't touch me to repair it. He says our sphincters have already taken a hit from the surgery, and that messing in there now could leave me with some incontinence.

I'm completely continent, with hardly a nighttime trip to the bathroom and zero seepage, so I accept his viewpoint. I live with a seton. He said we could periodically remove it for a break, if I want.

I know RV fistulas are different, and their repair likely doesn't affect the sphincters like a perianal one, but it's surely a question you might want to ask about.
Thanks rachelraven for the input.  I'm continent and haven't been told that surgery could make me incontinent.  However, I know that's always a risk among many other complications and issues.  I really would like a doctor to explain my different options.  I'm disappointed the cc won't do that.  I know they are hoping my fistula will go away and heal.  Me too but I don't think it's going to happen.  I know every person is different.   I'm already feeling pressure and pain after only two months post op.  I'm the kinda person if I have something to work towards it helps me stay motivated and optimistic.

Have they considered a biologic for you?  If an IBD related fistula, Remicade and Humira have had success in fistula closure. It's not 100%, but worth asking. Tried Humira here, and while "better," it's not closed mine. 

No they believe my fistula could have formed because my jpouch failed.  Also I've had two other surgeries for an endometrial ablasion and then a complete hysterectomy.  My pain and abscesses began after the ablasion but we can't be certain.

I have an RV fistula and go to the CC (Dr. Hull).  She told me - with absolutely no doubt - that my fistula will not heal on its own.  Something to do with being extremely angled...  She offered up several options, of which she honestly told me had very little chance of success, such as the LIFT, and the other usual fistula surgeries. 

 

She made it sound as though the only way to rid myself of the fistula - and this wasn't even a 100% sure thing - was to have a pouch redo (or removal).  Since I will not go through a redo, I am living with the fistula and seton and have been for 3+ years.   

 

I am disappointed you're not getting more info from CC, and that they are not "insisting" on a seton in the meanwhile.  You may want to think about trying another seton which could lessen your pain and prevent any abscessing.  They are supposed to help with the healing process, as well.  Is it possible that the first seton used was not of the most comfortable material?  Mine is "rubber" looking (yellow), and there are 2 there for redundancy.  I had it changed last year, and the new placement was uncomfortable for the first month or so, as I believe it was tied a bit tighter, but I've adapted to it and no longer feel it.

 

If you haven't seen Dr. Hull yet, I highly recommend her.  She is VERY informative, very thorough, will not sugar coat anything, and will talk with you for as long as it takes to help you understand every option. 

 

So sorry you're going through this. 

Thank you for your reply.  The seton I had was yellow and black and looked like a small plastic tie.  It was just uncomfortable as first but after a few weeks became unbearable.  I couldn't sit or lie down.  My skin started growing around it and it became tight.   I'm using Dr. Ashburn and she said oh I'll remove it.  I questioned her about my fistula returning if she did so and she said it looks dry.  Initially I tried seeing Dr. Dietz but they switched me over to her after they found out I had a RV fistula.   I even asked her nurse but they never were straight forward about anything.  They just saying don't worry about those things, you just get better.  She told me I had an abnormal shaped jpouch and a complex horseshoe shaped RV fistula which I read too off the MRI report.  I just see all of these wonderful reports about CC and I'm not impressed.  My family thinks I should get a 2nd or 3rd opinion.   I live 800 miles away so anywhere I go I will have to travel.  That makes things even more difficult especially with post op aftercare and problems.

There ARE different kinds and sizes of setons out there, ranging from surgical thread to larger plastic. 

 

You may almost have to turn it, now and again, to keep it from getting "stuck" in its tract. Eventually the tract should scar with the seton in, if you ever get another one. 

 

I've never been to CC.  I just know for me, 2 surgeons from 2 different hospitals (one my original surgeon) said that for me, surgery wouldn't be a great option because of the sphincter thing. So I deal and live with a seton, too. 

I also have an RV fistula. It's been 8 years now, and my pouch is 19 years old. The only thing different about me is that I don't have, and never have had a seton. I'm not even sure why my surgeon never recommended one. In any case, me and my fistula get along as well as we can. It's not fun, or anything like that, but it only really bothers me when I have inflammation from cuffitis. 

 

Like n/a, my surgeon believes most attempts at a repair are unsuccessful, and because my pouch is otherwise perfect I am choosing to live with this Rv fistula for now.  In my 9 years I've never had it close up and form (or re-form) an abscess, so I guess that's why the seton conversation never came up.

 

Hope you get some answers and relief soon.

CJ

Last edited by CJB

How do you find a doc who will prescribe biologics to heal a fistulae possibly caused by inflammation at the pouch (when you have a UC diagnosis, not Crohns)

 

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