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04-11-2012, 03:42 PM   #1
dgg
 
Join Date: Feb 2011

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Horseshoe fistula?

Anyone else out there suffering from this kind of fistula like I am? It's so annoying to deal with and the latest surgeon I met with on Monday basically told me that she didn't have much hope that a plug or flap (or combination of the two) would heal this kind of fistula. Fistulotomy is not an option given how high up this is. We're hoping that my new combination of Imuran with high dosage (10 ml) of remicade might help and the plan is to wait a few months to see.

On a different note, I am hopeful that research is being done to help with difficult to treat fistulas like mine. One of the leading GI doctors told me that she is working on getting FDA approval to do work on stem cells to treat fistulas like mine and that some studies in Europe using stem cells are showing promising results already. Hopefully someone will come up witha treatment to help people like me who just want a life free of pain and discomfort.
04-11-2012, 05:34 PM   #2
SomethingIsMissing
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I just wanted to say hello & sorry you are in pain. I have not had this type, surly someone will come along here and share.

Take care!!
04-11-2012, 06:21 PM   #3
Slim Johnson
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I have not had a horseshoe fistula. Has there been any discussion of using a Seton stitch? Those work for regular anal fistuale, and I would think that it would also work for what you have.. Of course, I am not an expert.. Just thinking out loud.

I do know that Remicade can close fistuale, as well as Humira. I hope you can find some relief with the Remi..

Good luck!
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04-11-2012, 08:01 PM   #4
dgg
 
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Thanks for the input but I already have 3 setons in. 1 on the back, in the middle below my butt crack and 2 on the sides. It's one fistula hole but it branches to two sides. Setons have been in for over 2 years. I have also been on remicade for 2 years but just started on higher dose of 10 ml every 4 weeks. Hopefully this will help.
04-12-2012, 01:20 AM   #5
Slim Johnson
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I hope it does.
04-12-2012, 02:56 AM   #6
Thirdtime
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dgg, I can relate to you. The type of fistula I have was not given a term but I was told it had branched. I did not want to live with it and decided to have an ileostomy to get it to heal up. I have never been on any meds for fistulas but it makes me wonder why they didn't try that with me.

Anyway, post ostomy surgery in Aug, I had another surgery in Jan because we could tell that the fistula was still not closing - it was much improved but not closed. My understanding was that the surgery in January was fairly extensive "down there" as they opened that whole area up, got rid of the 2 setons in place and are allowing it to close on its own from the inside out. It is healing... it is greatly improved. I am 3 months into this recovery - in no pain - but there's still some drainage so that means it's not healed shut yet. The good news is that until the stitches are dissolved we won't know if this has healed as much as it's going to on its own. In 6 weeks I will know and then my surgeon will decide on plan B. If it's healed, I'll expect some tests and then a reconnect in late summer. If it's still not completely healed and there's still a connection somewhere, then they are going to try the "flap" surgery on me, which I understand from my surgeon will be placed inside vaginally. NOT looking forward to that and really hope that this will heal.

I hope this provides some help to you. Yes, an ostomy is pretty drastic as a treatment but if it can close all this and scar it over for good, it's worth the trouble (and scars).

You're not alone... and when I read about you and your situation, it also helps me not feel alone in this too. Except for coming here, I've never met anyone else in life that has had a fistula.
04-12-2012, 08:38 AM   #7
Cookie
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Hi ddg,

I had something similar. Mine was called a complex fistula by my surgeon. It was a fistula from my rectum to my vagina with a branch that was unopened, which became an abscess. I did have the flap surgery...twice. Two different surgeons performed it. The first time it was successful for about a year then it came back. Second time the surgeon reinforced it with aloe and it did well for a long time. That was October of 2009. But recently things have started to get strange down there again, and while I am not quite sure at this point exactly what is going on, I'm pretty sure it's fistula related. So is the surgery a fix all? I would say no. But did it provide me with relief? Most definitely. Am I glad I had it? Yes. Will I do it again? Probably not.

The flap part of the surgery is usually done on the rectum side of the fistula (assuming yours is rectal?), so it should not matter if it branches. I do know that many surgeons will not perform this surgery on Crohn's patients due to low success rates. Also worries of incontinence due to weakend sphincter muscles.

Also, have you looked at the lift procedure? Don't know all of the details about it, but there is a thread on here from some who have had it. It is relatively new and might be worth looking at.

Good luck with whatever you end up doing. I'm not sure how much this helped you, but I did want you to know that you are not alone with this.
04-12-2012, 12:49 PM   #8
dgg
 
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Thanks for your responses. It does help to feel less alone since I also haven't met anyone with a fistula like mine. Even my surgeon told me she's only had one other patient with a fistula that wouldn't heal and had chronic setons in for years. I haven't heard about the LIFT procedure but I will ask about it. I have been dealing with this darned fistula for a few years (first had a simple one that healed up with a fistulotomy and was nothing compared to this horseshoe one) and I've gotten used to the grosness of it all. It's really the ongoing pain and discomfort that come and go that really drive me nuts. I just wish there was a solution to it. Hopefully something will work or a new procedure will be developed to help.

It definitely helps to hear others' experiences and to see how you all can keep a positive perspective. I try to stay as upbeat as possible but it can be tough at times, especially since it seems like the people around me don't really understand what it's like to deal with this (not their fault... I never would have imagined what this could be like!). I tell myself that maybe there's a reason I'm the "lucky" one plagued with this since I genuinely like helping others. Thanks again for the advice.
04-12-2012, 07:00 PM   #9
Slim Johnson
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...it's worth the trouble (and scars)...

Scars are sexy!!
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