Rachel - your story sounds similar to mine, except my fistula is pouch-vaginal. It seems like (just my observation) there has been an increase in reports of fistulas lately on this board. Or maybe I'm just more attuned to it ...
I've had my pouch for 20 years, discovered the fistula 2 years ago. I've had my seton in for nearly a year. The surgeon said nothing will "cure" this particular complex fistula, other than major surgery; the other option is to keep the seton in for 3-4 years, take it out, and see what happens.

I've recently attempted getting off antibx., and my pouchitis seems to be doing OK (doing homemade yogurt, and cutting way back on sugars/carbs); however, my fistula drainage increases when off of them, so I'm back on a low dose of levaquin.

As you obviously can't do sitz baths at work, you might try a squirt bottle filled with water to cleanse after a BM. I keep one in my purse for when I'm away from home and my bidet, which is another must-have, IMO. Using a squirt bottle after every BM sounds inconvenient, but you'll get the routine down. When I worked, I'd keep my bottle and a little container of barrier cream in a little makeup bag that I'd carry to the restroom. I also tuck a small cotton round over the outside opening of the seton in an attempt to contain the drainge; some people use gauze. If you have skin irritation from drainage, you'll want to use a barrier cream such as calmoseptine. And of course the sitz baths. I put a few drops of tea tree oil in, or epsom salts. I don't know if either of those additions do much, but they feel good.

If you go to the top of the page, "Find" and "seton", you'll find quite a few more stories and good tips on how to deal with setons/fistulas. They are tricky little buggers!

I wish you all the best, please PM me if you'd like!

Thanks for your reply!

I looked back a bit on other discussions.

Today isn't awful, and I've not used any pain meds. It's been 5 days since it was placed. I do have to admit at this time, it feels like it's GOING to feel better than having the fistula alone. The fistula itself kept filling up a pocket of skin at its exit, and that really hurt and stung off and on. It would cycle; you know, drain, feel better... fill again, hurt, drain, feel better, etc.

I just wish I had some energy. These months dealing with this first abscess then fistula have zapped me of my energy and my desire to eat well and exercise (like I usually do), and I really feel out of shape, tired, and blah. I'm hoping that soon I can get back to some gentle exercise, or yoga, or something. Did any of you feel like that? Like life stopped because of this horrible thing?

With the abscess part, and even the fistula to now, I've run low-grade fevers off and on, which left me persistently wrung out. I'm hopeful this seton gives me back some of my life. My husband doesn't think it looks horrible (I don't either; googling "seton drain" brings up some really awful photos, but mine is... dare I say, just tiny and cute? lol)

Ah, life. At least I can say I got a pretty exotic piercing out of all of this, yes?

Also, I have almost no drainage, even 5 days post placement. Maybe this is a good sign? Day one after placement, especially right after placement, there was a bunch of drainage, but now, there's barely anything.

Hello, sorry no advice for your drain but curious how your fistula was actually diagnosed. I've had a perianal bump for the past year that has been called a cyst, but no one can quite say why its there or if that's for sure what it is. More recently I had 2 severe bladder infections in a row with the last one looking like I was either draining blood or stool, I couldn't be sure which one. Im wondering if I actually have an abcess or fistula!? Did you have fevers or anything when you found your bump? Did you have a scan or ultra sound to finally diagnose it?

My whole story ran like this...

12/12/12 - wiped, and found the bump. I'd been having some anal irritation, and I thought that all the bathroom trips and urgency was just causing me to, well, get irritated.

First trip, they said it *could* be an abscess, but it *could* be a hemorrhoid (it wasn't; I've been a nurse for nearly 20 years, and this was not a hemorrhoid). The bump itself did, however, look pretty inconspicuous overall. I got pretty lethargic and sick over Christmas, and then the bump started draining.

Then, I started running a temp over 100. No other symptoms. I went to the ED, they "I&D'd" it (cut it), and really nothing much came out. But it kept persistently draining. That procedure and at least 3 weeks after were miserable. The temps got better after about a week, though.

I got scoped, and it showed pouchitis. I took Cipro for a month. That *did* put those issues at bay. I've never had bad issues with the pouch, in a pouchitis way, so I count myself lucky. This was my first time.

Anyway, the doc I was seeing just wasn't giving me answers, and I returned to Pittsburgh to my initial surgeon from 22 years prior. He said EVERYTHING I was reading, and said I needed a pelvic MRI... and THAT'S how they diagnosed the fistula. An "intersphincteric fistula (most common) at 7 o'clock."

He took me to an EUA (exploration under anesthesia) and placed the seton. But it was the MRI that showed it for sure.

Do you have drainage from your bump? Mine started draining on its own, after hot Sitz baths. The first GI folks I saw where I live called it a "cyst," too, but that's a stupid generic term to say it's just a bump. That doesn't help! I was like, "Dude. It DRAINS. This is not a hemorrhoid, OR a "cyst." I need an MRI! And they just said that an MRI was just taking it farther than necessary. Thank God for Dr. Schraut in Pittsburgh. If anyone is in the Pittsburgh area and needs a colorectal surgeon, he's the one who helped me when I had my first surgery 22 years ago, and he's who is helping me now. God bless that man.

Wow! Sometimes it is so irritating when something you KNOW is not right is just blown off as something minor! My surgeon is/was great but when Iwent in a year ago that is what it was, a "cyst". My ob wouldn't touch it because she didn't want to do anything to my pouch. It does not drain, it is more internal if that makes sense....it doesnt necessarily hurt, but can defenitly tell its there and at times it will be sore. It is right between my vagina and anus. I am going in on the 16th of April but would just like some answers! Do you know if a scope for my pouch would show a fistula or abcess? I will be getting one of those too since its been 2 years since my lsat one.

Pretty sure that the scope can't show anything, especially because fistula tracts are usually pretty small. I had one when I had the "bump," and the GI docs wrote me off, too, and called it a "tiny cyst." Wrong!

To find them under anesthesia, they go in the anal canal and use peroxide, or blue dye, or, oddly, milk, to look for bubbling where the fistula is, from my understanding. An MRI is apparently pretty gold standard to diagnose, but I also read that ultrasound can sometimes be useful. But I'd push for an MRI if you're really worried... they're just so precise, and they give such good views in such thin slices.

Today's been a pretty good day with this little sucker. I'm hoping I'm one of the lucky ones with whom this is but a blip on the horizon of life.

Hi Ladies it sounds like my situation also): I did have a sigmoidoscopy yesterday and all was perfect in the pouch! However this perianal abcess that was surgically removed in September goes through a similar cycle hardening discharging..it's in between my rectum and vagina.. He's looking for a fistula but the scope was fine blood work and X-ray all fine.. Next is a CT Scan should I be asking for an MRI? I do take up to 4 baths a day and I'm ok if this is the new normal for me.. I want what we all need answers.i have on and off really bad lower back pain do any of you have that also?

Gina, they did not see my fistula on a CT, but the MRI did pick it up. If you can swing it ($), I'd ask for an MRI.

Rachel/mom - I felt terribly sick in the months - possibly YEARS prior to the discovery of the abscess/fistula. Fevers, headaches, flu-like symptoms. When I asked my original surgeon whether I could have an abscess/fistula, he laughed - in my face - and said that I was "so thin that if you had a fistula I could see it". Huh????? Oh, I don't see him anymore...

Are any of you on antibiotics? They really seem to help with the drainage, but it's my thought that whether the potential side effects outweigh the drainage benefits is a personal decision, unless your doctor recommends them. My surgeon said "the jury is out" as to the worth of long term antibiotics with fistulas.

Rachel, I hope you continue to have good days with your new "friend". If the drainage ebbs and flows from day-to-day, though, I've found this to be normal. In my case, it seems to depend on how full the pouch gets, how much gas there is, and even how active I am.

I concur about the MRI. I *did* have a CT scan done when I was running fevers in January, and it blipped right over my little abscess, so they didn't even see it at all on that scan. MRIs are much more sensitive to things like a fistula that might be tiny (oh so tiny, but such big pains).

I have felt "off" for about a year now. Just headachey, running low-grade fevers here and there, and mildly flu-like from time to time. I'm not so sure mine was attached to this perianal abscess/fistula issue; more likely it was my ever brewing pouchitis. I think I've lived at a low-level pouchitis for a long time, and it was just something I got kind of used to. I still feel that way, though, sometimes, so I'm not 100% that that is the culprit, though. Sometimes I think there's something else brewing in me, somewhere, but we've just not found it. All of my labs were good, though, didn't even show inflammation (sed rate or C reactive protein). I did get very iron deficient last year, though, so some of my fatigue and general unwell feeling was tied to that... I had a copper IUD, and was having 14 day periods with it, but I've since had it removed, and things were on the upswing in that department, a few months later.

I just finished a seven day Cipro after my seton was placed. He also gave me one dose of something IV in surgery, too... but no, I haven't been on antibiotics for a few weeks til this. When I had the abscess, they first tried Cipro and Clindamycin, then, after he cut the bump in the ED in January, he put me on Augmentin (tore me UP, ugh, the nausea!), but after this ends, I'm done, unless something changes.

I'm not even wearing pads, my fistula/seton isn't draining barely but drops of clear fluid at the moment, seven days post placement. Before the seton, it would only "drain" when I'd have a bowel movement... then it would, like, nearly burst and mostly just put out bloody drainage, but not tons. I guess they're all different.

Such challenging problems we people have! If only "normal" people knew about all of this stuff, right? lol I tell everyone about my issues, though. I have no embarrassment over any of it. I think once you start dealing with it at age 11 like I did, it just becomes part of your life, you know? I have no recollection of what it is like to have a "normal" bowel movement, in my lifetime, though I did before 11, obviously. I also think being a nurse lets me not feel any sort of issues of embarrassment, either. I see a lot as a critical care nurse, and this problem is soooo little in the grand scheme of life. Plus, you never know who you might help if you talk about it.

I hope we all continue to improve! Thankful for this site, to talk with people who are "going through it," though. Appreciate your time and suggestions!

I've been on antibiotics on and off for about 6 weeks after surgery..My j pouch is fine I've had it now for 12 years with no issues check ups every year.. This abcess I had 2 were shockers!! This forum has answered more questions for me I only wish I found it sooner!! My family doctor thought I had a polyp and gave me pain meds and ointment because it was labour day weekend sent me on my merry way and told me to see my specialist on Tuesday I ended up in the ER with a fever chills and the rest is just blurry on top of that my beautiful mother passed away when I was hospitalized they let me out on a day pass fir the funeral drains and all..I did neglect my issues in the weeks before her death I thought it was just stress.. I have been healthy and active and I have 3 children that keep me busy.. I will never question if I do not feel right again.. I will ask for a MRI and if the wait is to long I will go to the States.. Do our doctors here get funny about that? I have not been diagnosed with a fistula but I really think I have one? Rachel I was told there was a risk to fix it.. It could lead to incontinence, but leaving it alone can't be good?

I'm so sorry that all happened when you lost your mom. My condolences to you, that had to have been just awful.

Surgery anywhere around sphincters can cause graded amounts of incontinence, from what I understand. That's why my surgeon chose the draining seton at this time. He's, like I said, VERY noncommittal about when this is coming out. I think he almost is looking at something long term (though I am not! but I will, if I have to).

Draining setons *can* be the end all/be all cure, but often times they are not, and other things have to be looked at. OR you just live with them. Not exactly my first choice, but I'm thinking of it like some "exotic piercing," lol, and if I have to live with it, I have to. I adapted to a loss of a colon; I'll adapt to my tiny little friend.

We as J pouchers, with our big pelvic floor surgeries, already can have a degree of weakening in our sphincters because of what they do to us. Mothers, obviously, can too, with carrying babies and birthing babies... so we're probably more at risk for incontinence issues than the regular public. Again, probably why my surgeon chose the draining seton. I was worried he was going to suggest a cutting seton, but even HE said, "Those are barbaric!"

No, leaving it alone isn't good, either, though I've recently read stories of people having them for YEARS (especially at Crohn's sites, those poor folks are plagued with them).

I'd suggest getting the MRI... and if it shows a fistula, a draining seton couldn't hurt. I do have to say that since I got mine, in this past week, I've had NONE of that spasming/filling up/bursting pain that the fistula/potential abscess kept doing, and my pain level is pretty nonexistent at the moment. I just took a walk outside and did some yard work, too... and never felt it. I'm pleased with that, because living with it the way it was would have been horrible if it had to be long term. If living with a seton, for me, is like this vs. that? I'll gladly take the seton! It's made such an improvement to my comfort in just a little time. I don't think everyone has the same experience, though, especially those Crohn's people (God bless them... I'm guessing all of their inflammation and issues probably just cause things to be worse). Also, my MRI no longer showed any abscess, so it was more just the fistula issue, so I think that also might have made a difference for me, since I'm not in the throes of an infection or anything at the moment.

Please keep us posted as to what you find out. I 'll be curious to hear back from you. In the meantime, any questions you have for me, I'll try to answer. I'm still not 100% perfect with it (still not sure how I'm going to balance the extra cleaning I need to do with life/work... haven't had to go back yet), but I'm sure I'll figure out something!

I wonder, as n/a said up there, there's been more fistulas/abscesses showing up in our population lately? It might be true.

When I had my surgery in 1991, it was only about maybe a decade old at the time. Here now, I've had mine for 22 years, and I think as we live longer with pouches, we'll see more and more "issues" arise as we age with them. Maybe abscesses and fistulas are things they'll find out are risks as your pouch gets older? Guess we'll find out eventually, when someone gets the idea to do a study...

Thanks for all your info I will ask my GI some more questions from our conversation(: Do you think that the reason today it hurts more is because of scope and internal yesterday?It definitely is more swollen and hard. I have been soaking as many times as I can? I agree with you I had mine done 2001 I think we are the norm and I will be so thankful when and if they will be easier to diagnose and fixed!!

Great info from everyone! I get occasional back pain but not sure if they are connected at all ...I had lab tests done last fall to see if I was anemic because I am SO tired all the time and do get alot of headaches and generally sick feeling alot, wondering now if this could all be connected! This site is great for knowing what questions to ask my doctor! More recently I've had rrucurring bladder infections so im wondering if a fistula has formed through to my bladder!? Guess I will have a better idea of what to ask for when I go to my appointment. I will be asking for an MRI to see if I can get some answers!

momoftwins, I just want to encourage you to do whatever is necessary to get to the bottom of your pain/headaches, fatigue, fevers, etc. I suffered with similar symptoms for years before it finally ended with the fistula. The fistula treatment involved antibiotics which may have been the answer to at least one of my problems: untreated pouchitis(?)

I agree with Rachel - setons aren't ideal, but they do stop the abscessing and pain, and can put your mind at ease regarding that!

And Gina - I am so sorry for the loss of your mom. What an awful thing to go through.

Make sure when checking anemia, you get them to check more than just hemoglobin. I had one doctor tell me I was fine, because my hemoglobin was fine. That's just one part of the picture, and just let's them know you have enough red cells there... but are they carrying enough iron? Do you have any iron stores. There are other labs to check.

Make sure also to get iron, total iron binding capacity, ferritin, and transferrin. My iron was 32 (out of the range of 40-150 for normal).

Ferritin too has a wild range for "normal," because it encompasses all people (menstruating women and men and *everyone*), so it's got a range of, like, 11-307 or something like that. Mine was 6. My iron stores were deplete.

I took some ferrous glycinate (had issues with ferrous sulfate), and changed my diet, and got it up to 18 in 2 months, which is still low, but acceptable low.


I, too, think I had pouchitis much longer than documented, at a "low level," a chronic low level. The first round of Cipro put everything quiet in there... for the first time in ages. The month of Cipro really calmed things. THIS dose of Cipro, after the seton, seems to be constipating me (it just ended, though) (or, as much as we can constipate; it's making things much thicker and making me struggle a bit... so I started a few prunes and tonight I'm having a beer. lol Beer usually gets things moving for me, and quickly!)

I felt around the seton today, and the hard "bump," the hardness where the fistula came out, it is significantly softer. And again, no real pain (a bit twinge after going to the bathroom and wiping, even with wet things, but nothing like before). This is encouraging.

Oh, and to increase iron, don't forget to eat iron rich foods with a vitamin C rich food... helps with absorption.

And also something people don't always know: black strap molasses has a high iron content. Brer Rabbit brand black strap molasses, in 1 TBSP, has 25% of your daily iron needs! So everyday I would take 1 TBSP of that stuff (it's a bit rough at first, but I came to like it), and drink some OJ after it. I swear that's what got my iron stores up, more than the pills, and it's what I go to when I feel tired.

Hi I have a update today I saw my surgeon because this abcess (which is just a open wound) has a cycle of being soft and fine and just before my period it gets hard and sore and discharges..usually the swelling and hardening is towards my rectum this time it was in my vagina.. Same symptoms different location. He told me its not an abcess there is no sign of infection but put me on a 7 week course of Kelex and Flagle.. I'm not sure why? My question is if there is no sign of a fistula and it is in a cycle can it be my new normal has anyone experienced this and just lives with it no surgeries no complications?

Sorry only a week of antibiotics not 7 weeks.

He's says no abscess, but is that just by looking only? Would he consider the MRI, to look for a fistula? When I had my MRI, it read as "no abscess," but I still had a bump on the perianal area that would cycle and burst. Still sounds sort of fishy to me. I'm allergic to Flagyl. When they were unsure of what my issue was, they stuck me on Cipro and Clindamycin, but they did nothing for the perianal bump. The Cipro slowed down my bowels, though. After the seton, I did a week of Cipro, and my drainage was next to nothing. Now, off the Cipro, it's picked up.

He probably chose Keflex because it can be used for skin issues like cellulitis.

I don't know what to tell you in terms of if the meds will work, but it's worth a shot... and keep us posted.

So, I went to my surgeon today and I do have some sort of abcess /infection He said he didn't know for sure if it was an in fected bartholin gland or a abcess that could br an indicator of crohns!? He wants to drain it and he said he will be able to tell then whether its pouch related or coming from the vaginal area. Is this the same kind of drain that you have Rachel? I'm really worried this is a sign of crohns

Well, mine is right on the anus. To the right side.

I did have an ER drainage of "the bump" but the way they diagnosed my fistula was with a pelvic MRI. I had a draining seton placed for it, and it really helped, but it broke at an office appt, and I have to have another placed 4/29. They can "drain" an abscess and not put a seton in, but the seton kept mine from doing a drain/burst cycle and made the pain nonexistent. My fistula/abscess wasn't anywhere near the anastamosis or J pouch, it is a low intrasphincteric fistula at 7:00 position ( the most common kind).

My surgeon currently isn't ready to go the Crohns route yet, but I'll be seeing a GI associate of his soon who might think differently, but honestly, it's not a 100% indicator of Crohns. It can just be the diagnosis of RBL too (random bad luck!). But it's good to keep it at the back of your mind. The surgery we have is a risk factor for these things as well.