RV Fistula, new pain?

[napster]

Been awhile since I've been on here, but things have been going ... acceptably. I had a seton replacement in Apr. '14, and it was a little tighter than the original. It is a draining seton. It somewhat irritated the "R" end, but I guess I eventually got used to it.

I should note I have a jpouch. My seton runs from the anus to just south of the vagina - the fistula does not go into the V, but exits near to it. It is a complex fistula, with a couple of sinus tracts off of it.

The fistula has been uneventful - drainage, but nothing outlandish. Pretty much steady as she goes, but recently noticeably more drainage.

However, recently there's been more pain - from the knot, I think - so I adjusted the seton - moved the knot up a little higher towards the "V" end. And now, I'm experiencing a new pain. I think the pain is inside, but, when I rub myself after going to the bathroom, or touch it in a certain way, there's a deep, uncomfortable pain. This is in the perineal area, closer to the "V" end. I feel no lumps or knots of any sort, and have not experienced this type of pain before. It's not SERIOUS pain, but something different, deep, and almost bruise-like.

I'm wondering if I may have irritated the fistula somehow when I moved the seton? Any other ideas? I am so afraid I'm developing a new fistula or ... I don't know..... scared, though. I have an EUA scheduled for December and really can't get in any earlier.

Thank you in advance for any insight you might have!

 

[Kat123]

Hi napster,

Just to introduce myself - I'm new to this forum. I've a perianal fistula with a loose draining seton. Like you had originial dx of UC, changed to (probably) crohn's when perianal disease emerged.

To me, more drainage plus more pain sounds like there is more inflammation around the fistula. Sorry if that sounds obvious and you were more looking for possible causes of the inflammation - honestly I don't know. The inflammation, pain and drainage fluctuates for mine as well. I can never link it to anything that's happened that might have irritated it except that it tends to be worse during my period.

For mine, the seton moves freely, I am always adjusting it, so I can't really relate to that causing the irritation. Perhaps if it was stuck in one place and then you moved it though, it could.

Are you able to have an MRI before December? That could provide some clue as to what is going on inside.

Hoping you feel better soon.

 

[napster]

Kat, thank you for your reply. I'm hoping you're right - that the new pain is inflammation around/in the fistula. I don't know why I'd have more at this point (the fistula is about 5.5 yrs. old), but who knows ...? I've had a bad cold recently, maybe mucous is being put out down there as well.

My seton is really quite tight. So perhaps moving it around more than usual did cause aggravation somewhere. I also wonder if perhaps it had grown into the fistula and when I pulled it it may have caused a little irritation.

I'm always concerned about "jumping the gun" when something new develops down there, so I'm going to try to give it another week or 2 to see if it gets better or worse.

How long have you had your seton, any plans on surgeries?

Thanks again for your reply - best wishes!

 

[Kat123]

I guess that your cold could have caused some systemic inflammation, or maybe your IBD is just causing a bit more inflammation that usual. That's how I tend to think of it if mine is playing up. I don't tend to think of it in terms of bacterial infection any more as newer studies found surprising little bacteria in the fistula tracts. Although, that said, I've taken antibiotics for abscesses which have helped.

Whatever the cause, it seems a good idea to wait a couple of weeks and see if it settles down on its own. Perhaps you could set a deadline after which you would contact your doctor? So you don't leave it dragging on...

I've had a seton since February this year, though the tract has been there for 3.5 years, but it was a dead ended sinus which would drain out my back passage. It became a lot more inflammed early this year and formed its external opening. I had the seton changed in July from a silastic one to a thinner and looser one, which my CRS believes is more comfortable and drains better. I don't know about the more comfortable part but it certainly drains!

They've offered me a LIFT procedure, but I'm very unsure. I'm seeing my GI and CRS next week to discuss.

Did you have any attempted repairs for yours?

 

[napster]

Yes, that's my plan - I'll give it 2 weeks and see what transpires...

My "new" CR surgeon does not recommmend any surgical fixes, outside of the redo of my jpouch or removal. I believe that there are several reasons for her recommendation: 1) jpouch related, 2) it's an "anterior" fistula - going upwards towards the vagina; 3) it's complex (sinuses involved), and 4) it's sharply angled, all of which impacts its ability to heal.

I'm not at all enthusiastic about a surgical attempt at fixing the fistula, as unfortunately I have not heard a lot of success stories for those who have jpouches. (Content enough if the seton does it's job and there are no more abscess or fistulas!)

I have heard some good things about the LIFT, but my surgeon said if it does NOT work, then I'd be left with a rather large, open space inside me which could cause problems. Not sure I understand that, but it's worth asking your dr. about. Several years ago I was in contact with a woman who had one done successfully. I could try to put you in contact with her if interested.

Have you heard anything about knotless setons? My dr. does not use them, but I've heard of others who do. It sounds very appealing to me, to the point of switching doctors.

 

[Kat123]

Hi,

Yes, I can see those would all be added complications. Mine is transphincteric midline, but posterior. The tract horseshoes round to the front to exit anterior to anus but that is all outside of the sphincter area. There is (or was) a sinus coming off to the other side, and they really haven't explained how they would deal with that.

I'm very much interested in hearing from people who have had the procedure, so if you were able to put me in contact that would be great.

I've heard about the knotless ones. Seems they need a machine to fix them. My surgeon seems to have a strong preference for the one he uses - mainly due to its wicking ability I think. It's tied very loose, which I didn't like at first, but I don't find the knot really bothers me. It is tied in one knot then a short length of thread, then a second knot.

If you are having an EUA in December, it would definitely be worth trying to get a more comfortable seton at that time. Presumably what you are thinking already.