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Fistula repair surgery....is it worth it?

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Crohn's Disease
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Posted 10/12/2012 7:16 PM (GMT 0)
My GI referred me to a surgeon (turned out to be the same one that removed my gall bladder in August, which was a useless surgery after al) about my rectovaginal fistula, since it hasn't healed. It was mostly healed with the Remicade, but the c. diff. a month an a half ago caused extreme diarrhea. This combined with constipation from all of the IV dilauded from numerous hospitalizations for the acute pancreatitis re-opened it worse than before.

Anyway, the surgeon said he doesn't even want to touch it for fear of flaring the pancreatitis and also because he thinks a specialist (like a colorectal surgeon) would be better. He's going to call around and promised to get me the very best....the couple that he knows about he thinks are idiots. BUT he said that most likely we would have to do a temporary ileostomy that would last 6-10 weeks depending on how things heal.

Is it worth it? Can it even be fixed? I know that it can be difficult with Crohn's to want to close them, but at the same time I don't want to have things get worse because I was afraid of what MIGHT happen. Right now the pain doesn't get too bad, it hovers about a 3 or a 4, and it's becoming a bit more frequent. I noticed yesterday some vaginal discharge starting and there was a little bit of pus on the toilet paper after BMs yesterday and today. Two weeks ago when I got really watery, urgent diarrhea just trying to hold it to get to the bathroom, it was pouring out through my vagina. But with solid BMs (which I now have, I am in remission and at 15 mg of pred, should be off completely by the end of next week) it's really fine.

Also, the surgeon recommended I start seeing an infectious disease (ID) doctor since I'm on Remicade. Is it necessary? He mentioned they might start me on Flagyl, but I've had 3 c. diff. flares this year and we now use Vancomycin for it...I finished it this week.

I really liked this surgeon and feel like I can trust him, mostly because he said that if any surgeon ever says this is an easy fix, to run away screaming because they're too arrogant. He also made me laugh when he said, "If I had the authority, I'd put the book of your life next to Job's." I'm always grateful when doctors are sympathetic; it makes me feel validated!

Anyway, anyone have any thoughts or suggestions about this?
Posted 10/12/2012 11:39 PM (GMT 0)
Surgery may be worth it if the fistula is really lowering the quality of your life.  I had a perianal fistula for about 3 years before it healed on its own.  It would become sore when I was in a flare, but only drained puss, no stool, so it wasn't TOO bothersome.

Are you still getting infusions of Remicade?  Maybe the Remicade will actually heal it this time now that your C-Diff is under control.  I would ask what the negatives are for waiting to see if Remicade helps.  But that is just my opinion, I personally will do almost anything to avoid surgery.

Good Luck with whatever you choose!

Posted 10/14/2012 1:31 AM (GMT 0)
I'm sorry to hear youre having problems with the fistula again :( I am wondering too if it is the C-diff that is making all the problems and once that is under control if the remicade will help with the fistula healing again.

I also try to talk things out with my specialists/research all options before opting for surgery. But like Myrne said I think it comes down to the quality of life and what you can live with. For me personally my fistula sucks but I would probably live with the pain/maintenance of it to heal on its own if i could. I am only getting surgery cause they wont let me start remicade until I do, which I need to avoid surgery on my ileum.

I really hope you find some guidance and get healing soon!
Posted 10/15/2012 6:54 PM (GMT 0)
Thanks guys, I appreciate the feedback. :) I was wondering the same thing about the c. diff. and I'm hoping that's all it is. I am still doing Remicade. I just worry about getting a vaginal infection from stool leaking through. It's also hard because it means I can't hold anything if I have urgency, but I'm a high school teacher and I can't just run out of the room. I am currently on leave and have a sub, but I can't stay that way for forever waiting for the fistula to heal, you know? At least surgery would be an excuse to stay out if that makes sense. It's been getting more painful after BMs and sex can be uncomfortable. My husband is very understanding, but we've also been married for only 10 months and this has been hard on him, so I feel bad, you know?

I've also had some narrowing I think - I feel like there's cement in my bowels, but it's hard to get things out even though I'm not constipated at all. I have an appt with my GI this week. Maybe it's time for an updated colonoscopy, I haven't had one in almost two years. My heart has been kind of funny this weekend, too....it'll start racing really fast and my hands and feet will get numb and tingly. It's been doing it since last Wed night. I'm waiting for the nurse to call me back. I think some days I have the body of an 80 year old!
Posted 10/15/2012 7:41 PM (GMT 0)
Can you get an opinion from another surgeon you have more confidence in ?
Posted 10/15/2012 9:14 PM (GMT 0)

Hi ScifiGal2K,

I think it would be worth it to find out more - if you can find a surgeon with a good track record on it & if he thinks he can succeed in the surgery based on where your fistula is located.  If your disease changes and you end up with diarrhea often, it can drastically lower your quality of life to where you are in a lot of pain, and also difficult to go out of the house due to the pain & issue of stool leak.  Also, my Gastro told me that the longer it stays open, the more well formed the fistula track becomes, like a pierced ear, sort of.  And then it is more difficult to keep it closed.  I've recently changed doctors, so not sure if what the old one said is true or not, but it makes some sense (the part about ears, I know).  Just cause you go to see the surgeon, doesn't mean you have to go thru with the surgery!  But then you'll know  more.  Another possible tool in the toolkit.?

I've heard that the best way is Remicaid and you are already doing that so, maybe it will close on it's own - that would be the best! Good luck with your decision!  And hoping the remicaid does it fo r you with no more difficulties with any other sicknesses. Crohn's is difficult enough !! :) as I'm sure you will agree.

(NDBC)

Posted 10/20/2012 12:18 PM (GMT 0)
I think it's worth it. I had 3 fistulas in the perinanal area and had a fistulotomy and 2 years later along with maintenance drugs haven't gotten a single one since.(knock on wood) the recovery wasn't easy but it had to be done and if I had to do it again I would. Just make sure you are with a good surgeon.You shouldn't have to live with constant pain.
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