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Crohn's Disease
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Posted 12/1/2017 2:46 AM (GMT 0)
Hi guys, I was after some advice. I have had an anal fistula since Feb this year. After a few I&Ds I got an advancement flap in July. It didn't work, I don't think, as the external opening never healed and I continued to drain and have pain in my anus. I got an MRI done about 3 weeks ago which showed an internal opening, a low posterior rectal lumen communication at 6 oclock. I'm not sure if this is the same opening that the flap surgery failed to close or if it's a different one they missed first time (this is my first MRI).

Anyway, my specialist is away for 2 weeks and I've been put on a wait list for a seton. I've had one seton prior to my flap surgery and it was awful. It throbbed and was uncomfortable and fell out after 3 weeks of its own accord.

My question is, how do I treat this thing?! I don't want to go with a seton because it hurt so much first time around and to be honest the throbbing due to the fistula after a bowel movement doesn't go away with a seton. I need to get this opening closed somehow. It feels like it's settled a bit with pain and drainage since the MRI. Shall I just turn up to the ER, say I'm in pain, and ask for a second flap or a LIFT?

This has ruined my life and I'm at wits end. All I seem to be doing is waiting for examinations.

Post Edited (dbrookenz) : 11/30/2017 8:18:01 PM (GMT-7)

Posted 12/1/2017 4:09 AM (GMT 0)
Going to the ER and asking for a FLAP won't do you any good. Even if you got lucky and found some random surgeon to do a FLAP on you, why would you want someone you haven't even vetted to touch you and possibly make you incontinent? You want the best and most highly trained surgeon to cut you.
My brother is a surgical tech and he told me that fistulas are one of the most complicated things to fix surgically. He said, for every 10 surgeons, only 2 are willing and able to work on fistulas, and only one of the 2 would be willing to even try and fix an RVF because the success rates are so abysmal. There's even a meme out there where the caption is 'we only do fistulas here' and then the next image is the surgeon running away. That's how much surgeons hate and avoid fistulas.
It sucks that your seton was such a pain, but that's what you need to get again.
I had one from August to October and it never bothered me at all, so who knows, maybe your second one won't bother you that much since your fistula has at least partially decreased in size from all your surgeries.
Or if you're a Crohnie, get on Remicade. It was the only thing that ever closed up my fistula.
Posted 12/1/2017 8:04 AM (GMT 0)
before running to surgery, have you tried any medications to help close and heal the fistula? have you seen a colorectal surgeon and not just a general surgeon? have you gotten a second or third opinion? please exhaust all avenues before having surgery.

are you in a country that rations care like canada or england? i know sometimes those countries try and handle stuff locally , but you may need to go to a much larger city hospital. just sayin'
Posted 12/1/2017 8:22 AM (GMT 0)
DBrookenz, my friend, don't lose hope. Look at the big picture.
The draining seton is a piece of cake. Something went wrong the first time you had it. Maybe the stuck it in the wrong way!?
No way it's going to hurt so much the 2nd time.
"a low posterior rectal lumen communication at 6 oclock" - You mean it is a low fistula? Ask your surgeon for more details if possible.
You'll fix it soon.
Just be patient.

Post Edited (Dimitri71) : 12/1/2017 1:25:51 AM (GMT-7)

Posted 12/2/2017 11:25 AM (GMT 0)
The draining seton is there to help and keeps pus from building up and causing even more pain. additionally it also settles down the abscess to ready it for the next step. give it some time. I agree with Dmitri, the draining seton should not be a big deal. and if it is, perhaps something was done incorrectly - especially if it fell out after 3 weeks. FYI, the draining seton doesn't mean that your pain post bowel movement is going away. mine was miserable as well. but the pain was not from the seton. the pain is from the abcessing that occurs when stool gets caught in the fistula tract. the seton just gives it a path to exit the body instead of building up to even greater pain.

Additionally, going to the ER for these types of surgeries are usually a bad idea. Often, there will be a general surgeon on duty, not a CRS, there and they are not at all up to speed on surgeries such as FLAP, LIFT, etc. Once in a while you get lucky and a true CRS is on call, but this is rare and not worth the risk. You would not even be able to request these types of surgeries in the ER. LIFT requires at least 6 to 12 weeks minimum with a draining seton before you can even think about trying it. I'm sure the FLAP requires some prep as well. Most likely you would just end up with a draining seton in the ER.

I say this because Ive made many missteps in my dealings with this nightmare. One of them was going to the ER, twice, to have an I&D surgery due to an abscess. This was a mistake on both accounts and looking back, I'd say that this move extended my misery to its current status and now trying to undo the damage done by the ER surgeons. If I could go back in time, this is the one thing I would change.

I would advise you to seek second, third and even 4th opinions and ask as many questions as possible - if you can. I know that certain healthplans don't allow such freedom. research the qualifications and patient testimonials if you can. But don't leave complicated fistula surgery in the hands of a general surgeon in the ER. You could find yourself in a much worse position than before.
Posted 12/2/2017 10:39 PM (GMT 0)
Thank you all for your advice and thanks for your positivity Dimitri. I know it sounds weird but we got this thing around the same time as each other so it helps when I read your posts on here.

I've decided to stick to my original plan and get my surgery with the specialist where he will likely put in a seton. I can handle the drainage, it's just the throbbing that comes post bowel movement which I'm sick to death of. Thanks for explaining why that happens though. On the very odd day I am actually pain free which I guess just means that I got lucky with no fecal matter entering the fistula.

I really hope that the seton is not as sore as last time and that it leads me surgery that finally closes the fistula. Maybe I can finally get my life back.
Posted 12/3/2017 12:17 AM (GMT 0)
I have 3 setons, currently. Had them for over a month. They hurt a fair bit and irritate a lot. The knots suck. Wiping sucks. I have lost 30 pounds trying not to eat so I don't have to poop, cause that hurts too.

I feel you brother. It will get better. When? I have no idea, but it will get better. I can tell you, the seton pain is awful, but it is SOOOOOOOO much better than the pain from an abscess that isn't draining.
Posted 12/3/2017 1:30 AM (GMT 0)
Hey Steve, I'm sorry to hear your experience has been rough. It will get better for you too. I think my biggest takeaway from this experience is that fistula are often VERY painful for people and because bowel movements are a daily, essential part of life, you can't avoid the pain and discomfort at all. Sometimes I get the feeling that medical professionals don't really understand that or are a bit dismissive, like they have bigger fish to fry.

Anyway, setons are the first step in a process to get rid of the fistula. You're struggling now but you're on your way. I hated my first seton but I've got hope the next will be better and easier to handle. Hopefully it won't fall out this time! Thanks again for the support and answers guys. This is a horrible and embarrassing affliction that you can't really talk about with many people.
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