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Posted 2/1/2009 5:07 AM (GMT 0)
I have a fistula going from the right Bartholin's gland to my rectum. Friday morning they went in to "define" the fistula to determine a course of action. The surgeon decided that since it was inflamed she would put in a soft C-ton (spelling?) for now. I don't know what I was expecting but it wasn't this. I really didn't expect to have strings hanging out of me and now it seems as if it is starting to come out some. I had a lot of drainage today and it appears to have more string showing. I was just wondering if it is supposed to start coming out on its own or if I should be worried. I can't call the hospital until Monday. I don't feel like its ER worthy, I was just wondering if anyone knew. Thanks
Posted 2/1/2009 5:14 AM (GMT 0)
I think it's "seton", but I know what you're talking about. Surgeons are generally quite mysterious about these little buggers, and I don't know that I can help a whole lot until you find out exactly which kind you have, but...

If the amount of string showing is increasing, it shouldn't be a problem as long as you're not feeling intense pulling or pain. What that probably means (based on my guess as to your contraption) is that as your abscess/fistula drains, the flesh will have a chance to heal/dry out which will potentially lessen the inflammation. As the inflammation goes down, the string is not pulled as taught through the fistula. The only thing that I've run into problems with is if the surgeon "stitched" the string in place, but if I'm understanding correctly, this is all internal for you so I'm hoping it wouldn't be stitched as it would if it exited your cheek for example, like mine.

I hope that helps and doesn't make it more confusing. Just think, in general, that more string means less swelling, and less swelling is good. So, if you're not in pain, you should be fine till Monday. Good luck with everything!
Posted 2/1/2009 5:37 AM (GMT 0)
tyvm for your reply :) Unfortunately it isn't all internal but I don't think that she stitched it in place. It looks like a bit of string hanging down with several knots below it and then the two ends hanging from that. I was pretty out of it yesterday but I only remember seeing one of the knots. I hope it is just because of the drainage/swelling going down. I appreciate your input it helped a lot :)

If you happen to check back here I'd like to know more about your gluten free diet actually. My boyfriend was speaking with a doctor recently and the doctor was telling him about Crohn's patients having a lot of success with gluten free diets. I tend to be a skeptic but am interested to know about people who have really tried it, not just people trying to make a buck :P

(Thanks for the correct spelling also, was able to get some more info looking it up that way)
Posted 2/1/2009 8:59 AM (GMT 0)
no problemo... glad that i helped a little bit. I hate that surgeons never take the time to properly explain what they put in you... and they expect you to have your wits about you as well. Yeah right! Not when there's anesthesia involved!

As far as the gluten-free thing...a brief summary. I bottomed out in August, and went to an Applied Keniesiologist (sp?) (alternative/natural-type "doctor"). He pulled and pushed on my muscles and put different powders on my tongue and magically decided that I had a problem with gluten. My mother is officially "allergic" to wheat, so the possibility made sense. I started a gluten-free diet in September, and noticed improvement all of a sudden at about the 30 day mark. Unfortunately, that's when I had to switch meds and taper prednisone, so everything kind of spiraled out of control and I gave up the diet around thanksgiving. By Christmas, I had gotten so bad that I am still amazed I haven't landed in the ER. I went back on a gluten free diet as of January 1, but am also on another prednisone taper so it's hard to say for sure what is doing what. I certainly have less pain on a gluten-free diet, but I have yet to make any other difinetive judgements. My intestines are very ulcerated according to my scopes, so it may be a while before they're healed enough to know what is really going on down there. Gluten free is rough at first, but once you really start to notice the lack of pain it gets easier. At least, that's how the transition has gone both times I've gone gluten free now. I'm bitter for a few weeks, and then I'm ok again. It really is worth researching because, as you said, there's nobody really making money off of it. It can be a super cheap diet if you plan it properly.

In retrospect though, my only caution would be to consider getting an official celiac biopsy BEFORE starting the diet if you're the type of crohnie who likes "official" answers. There's a lot of misty-area as far as this diagnosis, and some people (like me) test negative for it, but still respond positively to the diet. Hard to say really, but I wish I would have been biopsied before I went gluten free. Just out of curiosity I guess. I'm sticking with the diet regardless. It's not worth going back on gluten for 30+ days to find out now!
Posted 2/1/2009 1:44 PM (GMT 0)
Hello MissCris,

My setons are loose like yours. In fact, last time I asked my surgeon to make them loose. I find them easlier to clean. I use a hand-held shower sprayer to clean, and that cuts down the irritation that can happen with wiping. Put guaze around them to cushion them. As long as the two ends are tied in knots, it is OK and can't come out.

The drainage means the seton is doing its job. It keeps the fistula open because otherwise it could close unevenly and stuff from the rectum would get trapped in there -- abscess!! I suggest you check other posts within the last few weeks. We have had a number of threads discussing dealing with abscesses and setons.

Take care!
Posted 2/1/2009 4:07 PM (GMT 0)
And if it does fall out...don't panic. My surgeon said that it could happen. So far mine hasn't and it has been in 2 1/2 yrs.
Posted 2/1/2009 4:28 PM (GMT 0)
Thanks guys, I'll look for additional posts. To be honest the thought of really cleaning it is terrifying. I've taken a shower but not actually touched anything. I'm so afraid that it will hurt. The worst pain right now is my rear. She told me there was a chance that the procedure could cause hemorrhoids to flare. I thought I had them before but this pain is unreal. I'm thankful that the vicodin is keeping me from going number 2 lol. The incision site is very very close to my rectum but I wonder if anyone knows if it would be ok to use some Prep-H also? I had to call out of work today because of the lack of mobility its causing :(

I also don't know if anyone has had this type of fistula before but I have a lump in my right outer labia where the fluid is collecting. I've been putting pressure on it to try to keep it drained but I don't know if I should be doing that or not. They said I could do sitz baths but I really really dislike doing them.

I'm going to check out about some gluten free diets. I figure it can't hurt to try. It just seems like it might be a bit time consuming for me so I want to do it at a time when I know I'll be able to keep up with it. Thanks again for all the advice. Have a great day!
Posted 2/1/2009 6:33 PM (GMT 0)
Hello MissCris,

I am sorry you are experiencing such pain. I found I needed 24/7 pain meds for days after a prodecure. So don't kick yourself! Also, please take at least 3-4 sitz baths a day -- as in sit your butt in a tub of hot water for 10-15 minutes. The hot water gets your blood flowing to the damages areas and stimulates healing. And it cleans the area too. So consider it part of necessary therapy. Think of it as your time to relax and read a book, do a crossword puzzle, look at a catalogue, etc. I know at first it is terrifying even to look at what you have down there, but you must keep clean the area regularly with plain water, and use fresh gauze to catch drainage.

You mentioned an incision. So it sounds like you had an abscess and fistula, and they opened up the abscess and drained it and installed a seton. It this right?? I am concerned about the lump where fluid is collecting. Is this new??? The fact that you can push on it and drain it sounds like an abscess and fistula. Does your doctor know about it??? I really hope you doctor is a colo-rectal surgeon who has expereince in treating Crohn's patients.

If you have had an abscess opened and drained, it could take weeks for it to totally heal if it is big. You need to take it easy. Having had 2 of these myself, most of the pain you are feeling is from the infection and the incision. Both will heal over time, so patience is called for. Once I got over the shock of what I had (big, nasty, deep incision/whole and a seton), I learned to deal with it. Now that it is all healed, I am fine. No pain or disscomfort at all. And I even appreciate what the seton because of what it is doing for me. Anything that prevents abscesses is my friend!!

Take care!
Posted 2/1/2009 10:13 PM (GMT 0)
Well I'm glad to know that the pain isn't unusual. She initially told me I should be fine the next day but she hadn't planned on doing the soft seton. I will start doing the sitz baths, it will give me time to do homework at least lol. Right now I can only sit for so long so I try to read for school in bed and then of course I just fall asleep. I just took a really hot shower and let the water run over it and cleaned it with some mild soap. I feel tons better atm so I guess I'll give the sitz baths another shot.

It started out as an abscess in my Bartholin's gland (if you are familiar with the location) and eventually I noticed that I was able to put pressure on it and fluid would come out of my rear. Then fluid/air starting coming the other way too. I've had this since April because my GYN told me that since I had never been pregnant it wasn't possible that it was a fistula. He told me that if it was a fistula it would have all drained out of the back. Well...I had been doing sitz baths and making it drain out the front! So I stopped doing them. Over the course of about 6 months it would alternately close and open in the front (bartholin's gland). Twice over just the last few months I noticed that my right outer labia would about double in size when I was having inflammation (usually because of antibiotics causing D). So I became concerned that the fistula was branching or something. I think that the area that is collecting fluid now is relatively new and the surgeon sort of knows about it. I will definitely mention it when I go for my follow up. I'll give a call up there if I notice it gets any worse.

The main reason I called it an incision is because where the abscess had been (off and on) it had sort of what looked like a keloid scar on it. It had a little red tag and I think that she removed that.

To be honest, I'm not sure how much experience she has. I use the VA for medical care and they had given me permission to see an outside colo-rectal surgeon but I was having a lot of difficulty finding one who could treat me so they had me see one of their surgeons. I know that she has done the procedure a few times and did talk to me about the percentage rates of different treatments being effective for Crohn's patients. I can't remember (and of course my boyfriend can't remember) what exactly she said she found. I remember her saying that it definitely was a fistula (I remember that because of how justified I felt and how much I wanted to tell off my GYN) and she said something about Remicaid. She is going to talk to my GI and they will let me know what we are doing from there. I feel pretty good about the care I'm getting, especially compared to the care I've gotten in the past.

Sorry for the novel :P But thanks for your concern Fall. It is much appreciated and its really nice to have people to talk to who understand. As much as my family/boyfriend try...they just can't. :D
Posted 2/1/2009 11:46 PM (GMT 0)

Hi Cris,

My experience was similar.  Here is my story.  I went to the ER with a painful knot down there and drainage out the rectum and perineum (the area between the rectum and vagina).  I had no clue what it was (I didn't know I had CD at that time).  The ER doc said peri-rectal abscess -- go see a general surgeon.  The general surgeon said Barth. gland cyst. which is an abscess.   I said "but the abscess is on one side and the drainage hole in the perineum is on the other side.  And what is this drainage out the rectum?"  "Nope", he said, "I am a rock star and amazingly smart and know what I am doing.  You have TWO infected Barth. gland cysts."  (Well, he didn't exactly say that, but that was his attitude.  If I wasn't so sick and out of it I would have gotten up and left.  I should have trusted my instincts!!!!)  I was very sick, and very inexperienced with health problems and said "well, doctors know best".  He made two incisions and I got sicker and sicker.  I finally went to an OBGYN and he said while Barth. gland cyst are fairly common, two at once is unheard of.  "Your geneal surgeon is a quack"  (That is a quote).  He said he thougth something else was going on that was out of his "turf" -- out of his specialty.  So he got me with a colo-rectal surgeon who said yes it is a peri-rectal abscess.  He knows Crohn's and he took care of me -- cleaned out the abscess and installed the seton.  And I got better!! 

What I learned (my cautionary tale) is that doctors have areas they know (their "turf") and you better stay in it or you may regret it.  When the general surgeon took a look he should have realized it was out of his turf.  Barth glands are an OBGYN's turf.  He should have referred me!!!  He gave me two deep incisions I didn't need and ended up damaging the fistula.  My OBGYN was smart to get the colo-rectal surgeon involved.  The OBGYN said there is only a 2 - 3 inch difference between his turf and that of the colo-rectal doctors, so it is sometimes hard to tell what is going on.   The damage the general surgeon did to the fistula is why I got additional abscesses -- if he knew anything about CD he would have known not to cut into a fistula (unless you are doing a fistulectomy).  Surgery on CD folks is a specialty among specialists.

I am wondering if this is happening to you.  Again. it is within the realm of possibility to have a barth gland form an abscess and fistula.  But my doctors say it is much more likely to have a peri-rectal abscess off of the rectum with a fistula that empties out in the perineum.  Everything is so close down there that they typically need to explore in the operating room to really determine what is really going on.

The fact that your doctor mentioned Crohns is a good sign.  But it doesn't sound like she took care of the abscess.  I'm not a doctor and obviously don't know the details of your situation, but my doctors (the good ones) say the effective way to deal with a CD abscess is to cut it open, clean it out, and let it heal from the inside out.  I suggest you really need to talk to her about what she did and about the other pocket of stuff you are draining.  Call her and describe what is going on.  Unfortunately, fistulas can branch and you can have other abscesses off the main one (I had this happen).  If she doesn't have CD experience, maybe she can get you an appointment with a colo-rectal surgeon who does.  I strongly suggest you stay in the VA or University teaching hospital system for your surgeons.  My bad general surgeon was in a private practice and they get paid by the procedure (so guess what they like to do? operate!).  My good doctors are with a University hospital and are on salary (so they do care if they operate or not).  This is my opinion - I'm sure there are ethical surgeons in private practice.  I just got an bad one (bad doctor!  bad!!).

Also, my bad doctor said I'd be able to go back to work in 3 days.  What an idiot.  I was able to tolerate sitting a couple minutes at a time only after 2 months.  Now again, I had a massive infection (cellulitis) and his lovely incisions, so don't think my expereince is normal.  My second abscess a year later was very deep, so the incision was pretty big.  I went back to work two months later -- but I started working from home after a week and a half.  Sitting was a challenge for several weeks, and I decided to stay off my feet to give the incisions the best chance to heal.

So that is my novel.  I agree that it is very nice to be able to talk to people who have expereinced all this!  This forum has been a real blessing to me.

Now go and take another sitz bath!   tongue

Take care! 

Posted 2/2/2009 1:42 AM (GMT 0)
I'm very sorry to hear about what happened to you =\ People wonder why I don't trust doctors lol. My original dx was Bartholin's abscess but I do recall the surgeon saying it was possible it started as an abscess in my rectum and pushed its way out.

Part of the reason that it took me so long to get this taken care of is that the one doctor who should have identified the problem said it wasn't possible. I brought it up to my GI's PA and she said she didn't know if it was possible. Several months later I see the GI and he says...ok lets check this out I'm going to send you back to GYN. I wait for my appointment and finally get a letter in the mail saying that she is too busy, they are referring me to an outside colo-rectal surgeon. I call a surgeon, ask specifically if they can handle this and they say yes. Weeks go by, right before my appointment they call and say "we can't do this, you should call a colo-rectal surgeon" and I'm going "...that's what you said you were". Back to square one and the GI tells me he will try to get me in with a VA surgeon but because its been going on for so long (cause that's totally MY fault) they can't classify it as an emergency and it will be a few months before I can get a consult. Finally...I end up here lol. So people were trying to stay within their own turf but they just kept passing me around =\

When I went in on Friday the abscess wasn't there so its really not her fault that she didn't drain it. I had been doing well with no real swelling in that area. It was only Saturday that I noticed that it was getting swollen and hard. I'll call up there tomorrow and let her know whats going on.

The time line you are giving for going back to work makes me nervous :( I work and go to school full time, I can't afford to miss any more days of either. As far as school is concerned I may try just standing in the back and taking notes that way.

Yessum, sitz bath inc :)
Posted 2/2/2009 2:21 AM (GMT 0)
Wow. I really want to scream at your doctors!!! Staying in their turf my butt!! And one sent you a letter?!?! I am so sorry you went through all that!

I waited way too long. I didn't know what the drainage was about but felt generally OK. No pain or fever. I thought I had a recurring vaginal yeast infection. What sent me to the ER (I know now) was when the fistula sealed -- trapping the infection. I learned not to ignore things! And to not wait for doctors. Insist on getting an appointment. Doctors make time for the truly ill. If not, get another doc. My colo-rectal surgeon is excellent. The third time I got an abscess, I called him and and described my problem. He scheduled me for the OR the next day -- without even seeing me.

If you don't have an incision, you should heal fairly quickly. Once I got the abscessed cleaned out and the seton in, I started to feel so much better. I felt less "toxic" if that makes any sense. The reason I was off work for soooo long was the bad doctor didn't treat me right and gave me two incisions in infected tissue. I was really sick. Your seton should drain the infection and you should start to feel better soon. The inflammation will go down and you will be able to tolerate more and more sitting. So please don't get nervous because of my time off! But give yourself time to heal. Let us know what your doctor says!

Good for you working full time and going to school! I actually brought pillows to work and would lounge on the floor. I got really good at lounging!!!

Now I feel like taking a sitz bath too!
Posted 2/2/2009 3:42 AM (GMT 0)
Haha yeah by the end I wanted to scream at them too. I told my mom that if they put me off again I was going to tell them off. Of course I couldn't really do that but I was thinking of contacting the social worker at the hospital because I was starting to feel like I wasn't being taken care of. I have learned a lot since all of my medical problems have started and I am much more proactive than I used to be. Unfortunately I am still fairly non confrontational so I still get pushed over sometimes.

Part of the hassle that I had was that I had just recently moved out of state so I was in the process of getting set up with a new VA hospital. They didn't know me from Joe. But since all of this has started and I've become their "interesting" case (lol), things are much better. I called up the other day because my Crohn's was flaring again and asked for antibiotics and they were in the mail that day. It was nice that they trusted me and I didn't have to make the hour drive to be seen.

I completely get the "toxic" feeling...lol...I'm so glad that I'm not the only one. I always felt silly using that to tell people how I felt because they would just look at me crazy.

So the other thing that kind of sucks is that since I started having the new abscess, the one that's higher up in my labia, I've noticed that I have some itching on the vaginal wall opposite of it. That really made me nervous that it was going to ... tunnel through or something but then it went away and I forgot about it. Well the swelling is back and so is the itching. Hopefully it isn't anything serious but I am definitely going to ask about it, seeing as I tend to be Worst Case Scenario Girl. (I should make that into a signature)

Haha you must think I'm a superhero, sorry for the miscommunication. I work part time, school full time. I wish I could lounge at work or at school, that would make all of this so much easier lol. What kind of work do you do?
Posted 2/2/2009 1:09 PM (GMT 0)
Yes, I was completely clueless about medical stuff and doctors before this happened. It is nice to now know a thing or two, and to be on good terms with the doctor's assistants. They have been wonderful in getting me in ASAP.

You reminded me of one example of being clueless. After the first surgery I had all those incisions plus drainage from the fistula. I kept the area clean and used guaze. But I developed a red patch that was very painful (ridiculously so) and started to bleed. Of course, I assumed I was dying. I got in to the doctor asap. He said it was diaper rash (!!!). The area was staying too wet and the skin was breaking down. So Diflucan and Balmex did the trick. I now use Balmex if anything gets irriated down there. Good stuff. Now how silly is diaper rash!! I feel for babies because it really is amazingly painful.

Even working part time and full-time school is a lot. Especially with Crohn's. Good for you!!

Take care.
Posted 2/2/2009 1:47 PM (GMT 0)
Hey MissCris. So sorry to read about your awful ordeal! I am another one on here who has had numerous abscesses and fistulas. I can't stress enough the importance of doing sitz baths! Use the hottest water possible. It promotes healing so do it as often as you can.

When I had my seton placed and also an abscess drained with it, I was back to working out in a week. I have read about the really bad pain people have had with theirs but that wasn't my experience. Maybe it is the way my surgeon does the surgery. I don't know. My last couple of fistulas have been to the bartholin gland, and my first was also there too. But I was able to close those with remicade and high doses of flagyl. I'm not sure why my fistulas like to go there, but that is there body part of choice it seems!

Hopefully, you will start to get back to normal soon. Have you tried sitting on your side with you legs up and off to the side? That is the way I sit after my surgeries. Good luck, and keep soaking!
Posted 2/2/2009 3:37 PM (GMT 0)
That's funny about the diaper rash. I think that's part of the reason I don't always say anything, I'm afraid it will be something that isn't serious or something. It really hurts to laugh but I can't help but laugh at "Of course, I thought I was dying"...that's such a me statement lol.

Chroniemom, I'm sorry to hear that you keep getting them there. It has been such an awful experience, I can't imagine going through it more than once. It makes me want to cry cause I just want my vajayjay back :(

They have mentioned Remicaid for the fistula and they had brought it up for the Crohn's as well because my meds aren't helping very much any more. They just wanted to get the fistula figured out first. I'm not going to lie, the horror stories I've been hearing about Remicaid make me never want to try it even though it would probably take care of all of this.

I called and left a message with the surgery nurse so hopefully someone will call me back today about the abscess. Hope everyone is having a peachy day :)
Posted 2/2/2009 3:53 PM (GMT 0)
They called back and said that if I want to come in she can fit me in this afternoon but its up to me. That makes me feel like its not that big of a deal and I don't want to drive an hour each way for nothing. I told her if it gets worse then I'll go in, otherwise I have an appointment on the 11th.
Posted 2/2/2009 9:16 PM (GMT 0)
I am glad to hear you called and that she is willing to make room to see you. That speaks well of her!!

I've had 3 abscesses (all in the same spot because of the the damage the bad doctor did -- grrrrr) and it does get easier. The first time is the absolute worst. The second time was easier because I new more of what to expect. Look at all you've learned already! The third time was like "OK, I know how to do this". I am NOT saying it was like "OH GOODIE!!! Just what I was hoping for! Another rectal abscess!!" But it was more like OK I have to stock up on guaze and get work to take home with me. And how about more movies.

I went on Remicade. I had 5 infusions and felt much better. But then I became allergic, so we tried Humira -- allergic too (they are related). I suggest you give the Remi a go. You can always stop. It really is one of the better drugs at getting fistulas to actually heal. Once the fistula shrinks, they take out the seton and let it close the rest of the way. I'm on 6MP now and it just keeps inflammation down. I wish I could have stayed on Remi or Humira.

Take care.
Posted 2/3/2009 12:01 AM (GMT 0)
Thank you very much for helping me survive my mini-ordeal :P It has made a world of difference. This is where I disappear for another couple of months until I freak out about something else :P Good luck with everything guys!! <3
Posted 7/12/2010 5:32 AM (GMT 0)
I had no idea there were so many different ttypes of seton string procedures.  I have the seton that comes out of the body and ties together with another string they made an incision for.  I have had 9 abcess drains and I hope this seton comes out soon and then my dr says he can do a fistula plug. 

Has anyone had this done?

Posted 7/12/2010 2:18 PM (GMT 0)
rectally fedup...from what I have heard and read the plug does not have a good track record for crohn's patients. My surgeon will not do it, and there are others on here who have had it done and it failed.

I have had about the same number of surgeries as you have. I had my seton placed 4 years and I still have it, and have been abscess free since! Love it!
Posted 7/12/2010 5:40 PM (GMT 0)
chroniemomx2, Thanks for the info just trying to get on with my life and this seems to be pulling me back.  They tested me for Chrons and said I did not have it.  Did they say when you might be able to take your seton out?
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