Share Facebook



06-03-2010, 09:40 PM   #1
CodeBrown
Member
 
Join Date: Apr 2010
Location: warner robins, Georgia
Fistulas?

Ok...I have a question...and to be real honest this is very embarrasing for me to ask. How do you know you have a fistula? I am just wondering because I have begun having air escape the lady parts - this is unusual for me and quite embarrassing to say the least. Has anyone else had these experiences and was it from a fistula?
__________________
Tammy

Currently on Humira and Entocort
Multi-vitamin and B12 injection
06-03-2010, 09:48 PM   #2
My Butt Hurts
Squeals-a-lot!
 
My Butt Hurts's Avatar
 
Join Date: Aug 2007
Yup. Mine was never diagnosed, but my gyno said that if air is escaping from there, it's the only thing it could be. Mine must be teeny tiny, cuz she couldn't see it. Also, poop rarely escaped from there unless I was in a bad flare, and even then only a trace. I think it is almost completly healed on its own since I have been in remission.
That is only one type of fistula. I would get it checked out if I were you, just in case it's more serious than mine.
06-04-2010, 07:22 AM   #3
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Jul 2009
Location: St Petersburg, Florida
how often does the air escape? does it make a noise?
__________________
Becky

diagnosis- Oct 2006

remicade every 6 wks
06-04-2010, 09:22 AM   #4
CodeBrown
Member
 
Join Date: Apr 2010
Location: warner robins, Georgia
My Butt Hurts - I have not had stool (that I am aware of) pass through there, but definitely air. I have suspected fistulas before, because I have had weird places around the perineum (sores/bumps) that were draining...God this is so embarrassing. Of course my FP doc tested them for STDs - all were negative. This was before I was diagnosed with CD though, so no one ever said anything about that possibility. She just gave me antibiotic creams (since the cultures showed Staph).

Becky - When I go to the restroom mainly or when I do things that put pressure on my abdomen (bending, stooping, etc.).
06-04-2010, 10:19 AM   #5
CDDad
Senior Member
 
CDDad's Avatar
 
Join Date: Mar 2010
Location: New Jersey
I don't know about the lady parts, but if you have Crohns, then those perianal sores and bumps sound like fistula to me. It's probably worse for a woman, but believe me I know how embarrasing it is. But I think you should visit a colorectal surgeon to let him or her take a look. You don't have to do anything but at least find out your options.
__________________
-Joe
Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.

Last edited by CDDad; 06-04-2010 at 11:57 AM.
06-04-2010, 10:47 AM   #6
Becky
Senior Member
 
Becky's Avatar
 
Join Date: Jul 2009
Location: St Petersburg, Florida
Tammy- asking b/c sometimes I have air escaping feeling sound too. I never have stool either. I never know what it was.
06-06-2010, 11:08 AM   #7
acg101
Senior Member
 
Join Date: Jan 2010
you should not be embarrasing to ask anything, we all have had some 'unexplainable' events.
since the cultures showed Staph, you might want to visit an infectious Doc because creams are localized.
best wishes
06-07-2010, 05:33 PM   #8
Sidders
New Member
 
Join Date: Jun 2010
I am having the same problems and it's horrifying. I have terrible fistula around my rectum but now am getting the air from the lady parts and in the past week I've noticed a fistula forming on my inner thigh.. it's about 3 or 4 inches from any of my "Parts" and it's really freaking me out.
06-07-2010, 07:10 PM   #9
CodeBrown
Member
 
Join Date: Apr 2010
Location: warner robins, Georgia
Thanks acg...I did go on antibiotics after that (z-pak) and it cleared up.

Sidders - what does your fistula on the inner thigh look like? I have had something weird of mine too, but wasn't sure what it was. These days I can never tell what's going to happen next!
06-07-2010, 07:15 PM   #10
Sidders
New Member
 
Join Date: Jun 2010
It's weird. Initially is starts out looking like an ingrown hair.. but then it gets this sort of bruised-like appearance, but it's not really round. It's more of a straight line. I've had one other one in what I thought was an odd spot... right on my butt cheek. I know they're not pimples or ingrown hair because they don't go away and wind up looking just like the other fistula after they've been there a while. Like there's scar tissue around it or something.
06-07-2010, 08:40 PM   #11
CodeBrown
Member
 
Join Date: Apr 2010
Location: warner robins, Georgia
That's how mine are too. They stay purple (like a bruise) though...I wasn't sure what they were, but I thought they were fistulas. I guess my GI doc needs to check them out. Thanks for sharing.
06-20-2010, 09:58 PM   #12
Crohn's_Doll
Senior Member
 
Crohn's_Doll's Avatar
 
Join Date: Sep 2009
Location: Winnipeg, Manitoba
Sidders

I also have this on my inner thigh. It started a year ago, an oblong bump, it would go down at times and turn the purplish color. It just started to come to a head about a month ago and finally burst, thought I was rid of it for good It came back would puff up and burst over and over. My fam dr. said it was as ingrown hair and told me he would lance it. Next time I went he said that he wouldn't in case it was a fistula. I went to see my GI Dr. he's not sure what it is but in-case it is a fistula he put me on 3 weeks of flagyl/cipro to see if it helps. If that doesn't do the trick then he will have me up my humira dose.

BTW I do NOT like this flagyl stuff, it makes me feel flu-ish and oh my the nausea.
06-21-2010, 08:35 AM   #13
acg101
Senior Member
 
Join Date: Jan 2010
It sounds like possible fistulas. I have one right now but it is clearing up.
I dont like flagyl. I was on it for 8+ years until it caused me some nerve damage
06-21-2010, 11:00 AM   #14
Crohn's_Doll
Senior Member
 
Crohn's_Doll's Avatar
 
Join Date: Sep 2009
Location: Winnipeg, Manitoba
Wow Dan, I couldn't imagine 8+ years . I'm sorry to hear about the nerve damage.

Good to hear your fistula is clearing up. I hope whatever mine is clears up too.
06-30-2010, 01:04 PM   #15
Silvermoon
Moderator
 
Silvermoon's Avatar
 
Join Date: May 2010
Location: Alberta
Here is a great link on fistulas and how they work:

http://www.nlm.nih.gov/medlineplus/fistulas.html

I have had them to bladder and uterus, and they can be nasty when they do start passing more than just air through, as they can cause reoccuring infections. Safe bet to get it checked out.
__________________
My Story
07-30-2010, 12:55 PM   #16
Crohn's_Doll
Senior Member
 
Crohn's_Doll's Avatar
 
Join Date: Sep 2009
Location: Winnipeg, Manitoba
Bumping up this thread... My inner thigh abscess is back. I took pics of it and want to share and get your opinions. Just nervous about it being so close to the inner thigh area. I'd like to know if this is just a plain old abscess or is it a fistula in the works? to post the pic or not?
07-30-2010, 02:33 PM   #17
Sidders
New Member
 
Join Date: Jun 2010
I'll show you mine if you show me yours.. lol! :O) My inner thigh thing just got huge two days ago.. couldn't help it and I popped it. My entire leg was sore the following day. I really believe mine is a fistula, not just some weird abscess. If you want to send to me privately, that's fine. I'll take a pic and send it, too. I'm not sure how you do that here...
07-30-2010, 06:46 PM   #18
Crohn's_Doll
Senior Member
 
Crohn's_Doll's Avatar
 
Join Date: Sep 2009
Location: Winnipeg, Manitoba
Sidders, I was on 3 weeks cipro/flagyl and it cleared up but I could still feel a "ridge" under there like a line. Anyway.... a couple weeks off the meds that BTW made me feel worse, darn thing came back. Now lets try to figure out this picture thing... Or we can trade emails?
07-31-2010, 09:49 AM   #19
Beckylou
New Member
 
Join Date: Jul 2010
I was first diagnosed with Crohn's because of all the fistula's I was getting. They started off as rectal ones and then I started passing wind out of my lady bits too...unfortunately it didn't stop there, I started also passing poo - not pleasant as I'm sure you can imagine! After an EUA, they discovered it was a rectal/vaginal fistula where the fistual had "burrowed" through from front to back.

I had a repair where they took muscle from my pelvic floor and "mended" the track in between the bowel and vagina. Unfortunately it happened again, and so I had the same surgery again.

I've also had the abscesses though on my inner thigh, all around behind and all around the front (sorry for lack of technical speak here!) and these have all had to be excised as they're all pretty deep and then packed everyday with seaweed stuff (I can't remember the name of it but it promotes healing). Having had SO many of the buggers....they have now decided that the abcesses aren't in fact the Crohn's but Hidradenitis Superativa (which apparently a lot of Crohn's patients seem to suffer from). Have a google of it and see if your abcesses/fistuals look the same.

A fistula usually has a "track" that you can actually feel leading up around the rectum and an abscess doesn't.

Hope that bit of info helps - all in all they're both nasty and SOOOO painful...you all have my sympathies with them. xxxx
__________________
Diagnosed with CD in 1989. Also have Hidradenitis and Rheumatoid Arthritis...both linked with the Crohns.

Currently taking Certolizumab

Have been on in the past
Azathioprine
Asacol
Infliximab
07-31-2010, 10:14 AM   #20
Sidders
New Member
 
Join Date: Jun 2010
Thanks for the information.. I did look Hidradenitis Superativa up and found some great info on Mayo Clinic's website.

So did they retract your Crohn's diagnosis? And did you ever get the abscesses in your arm pits? This one I have on my inner thigh just came up recently.. it's drained and is looking better but the perianal and vag. fistula are really acting up. I can't see the ones "inside", but I feel a lot of pressure down there and when I press on either side, lots and lots of stuff comes out. It's just awful. So far no "poo" coming out, but I live in fear that it's only a matter of time before it does.
07-31-2010, 10:31 AM   #21
Crohn's_Doll
Senior Member
 
Crohn's_Doll's Avatar
 
Join Date: Sep 2009
Location: Winnipeg, Manitoba
I also looked up HS, very interesting. I've never heard of this condition before.

Sidders: Ours does look similar, mine looked just like that in the earlier stages. What does it look like just after you popped it? Do you see anything in there?
07-31-2010, 10:44 AM   #22
Sidders
New Member
 
Join Date: Jun 2010
The pictures I sent are of mine as it looks today. Sounds like you've had yours for a while.. mine has only shown up in the last month or so and just a few days ago got stuff in it and swelled up. Yours looks horribly painful.. it is much more open than mine was. I looked that HS up, too and I'm not certain that I think having that condition is what's going on here. I've never had a problem with acne, nor have I had anything in my armpits or other areas. The poster said something about the "track" that you could feel with the fistula and that is what I think is going on with me. When I popped the one on my inner thigh, my entire leg was sore the following morning like it's all connected somehow.

I've never had a doctor that was very interested in doing much about my fistula other than give me antibiotics.. have you? My vaginal one appeared when I was 7 months pregnant with my daughter and the doctors are just kind of like, oh, well. They've never even done any kind of ultrasound in there or anything. I'm wondering if I need to go to someone who specializes in surgery in that area and talk to them because the ones inside are getting pretty bad. It's one thing to be able to control passing gas, but I have no control over the air that comes out of these things and I've barely been able to avoid some pretty embarrassing situations! Does that happen to you?
07-31-2010, 11:05 AM   #23
Crohn's_Doll
Senior Member
 
Crohn's_Doll's Avatar
 
Join Date: Sep 2009
Location: Winnipeg, Manitoba
Yeah so far the dr. has given me meds (blah) . I've had mine for over a year but it's been getting worse and worse. My nurse did recommend that I see a dermatologist, she said that they would know what sort of skin condition it is. I'm sending her my pics next week and see what she has to say. I think the derm is a good idea. Nope they have never done any sort of ultrasound or probing, lancing. The nurse is sure it's a fistula though.

I have been very lucky that I have not developed any in the vag or anal areas, since I've had crohn's for 30 years now.

I do have that "track" thing or ridge that I can feel going along side. I know it looks round in the pic but it really is oblong when you actually feel it.

Beckylou: thanks for the info and so sorry to hear that you have this condition. I fear that once a fistula has started, things might get out of control and more will develop. Sounds like yours are pretty intense, again I'm sorry to hear about that. You too sidders none of this sounds pleasant.

Anybody else have any suggestions or ideas? Have any of you had ultrasounds or imaging that has confirmed fistulas? Ugh I feel so lost here.
07-31-2010, 11:16 AM   #24
Beckylou
New Member
 
Join Date: Jul 2010
Crohn's Doll, yes CT scans can confirm fistulas, had one back in January and thankfully no fistulas showing up so just these damn abscesses...got four at the moment all around my vagina and on antibiotics, really praying they work (although this is the second lot in 4 weeks) or more surgery needed.

Sidders...I've still got Crohn's unfortunately too. I did actually question that the other day with my IBD nurse but she said "oh no, you've definitely got it" - bum! (pardon the pun!!)

I've been pretty lucky with the HS in that I've only ever had the abcesses "down below" oh and one on a boob, but none in my armpits. I was under a dermatologist for a while for it but they really didn't know how to treat it - you'd think of all people a derm would know how to treat a skin disease wouldn't you?! So hence it's antibiotics every time they appear usually followed up by surgery as I swear now I'm immune to all the antibiotics they give me - I'm on them more than I'm off them.

I did query with my IBD nurse about the Cimzia that I'm on for the Crohn's because I read in the leaflet that comes with it that it can cause infections such as pockets of pus anywhere in the body - but apparently the Cimzia can help with HS so I'm going to carry on taking it for now.
07-31-2010, 11:54 AM   #25
Sidders
New Member
 
Join Date: Jun 2010
One other weird thing I've had is something called Erythema Nodosum... painful little nodules that popped up all over my calves. Initially, I thought they were boils (sp?) and I kept messing with them until I finally got one open and the hole was so deep it went all the way to the fat cell layer of my skin. I still have a scar from that one and this was back in '94. They're a symptom of Crohn's, but ironically, you can get them from taking sulfa based drugs. I've never had them as bad as I did in the first flare up, but from time to time, I'll feel one developing.

What drives me nuts is that I'm pretty much symptom free of the Crohn's right now.. meaning I'm not in a flare with the normal stomach complaints.. but the disease must be active if I'm having so much trouble with the fistula, right?
07-31-2010, 12:17 PM   #26
Beckylou
New Member
 
Join Date: Jul 2010
I've heard of Erythema Nodosum but wasn't sure what it was, god you poor thing, that sounds as nasty as all the other lumps and bumps that we've been talking about.

I must admit I think I'm pretty symptom free at the moment - apart from the usual bloating, cramping, the big "D" and then the other, constipated - but that all only happens maybe once a fortnight....but the abscess problem makes me think that I'm having a flare up too....it's all inflammation after all. So you may be right in that you're having a flare up with your fistulas giving you trouble. I can usually tell because the hospital will ring me and ask what problems I've been having as my white cell count was a bit higher than usual and viscosity levels too - all to do with inflammation - so when I tell them yes, I've got yet ANOTHER abscess they say "oh, that would explain that then"!!!

If you have got a fistula and you're worried about it - I would definitely go and see your doctor, because if these get further infected they can be quite dangerous - I don't want to worry you, but you should really get it checked out.
Reply

Thread Tools


All times are GMT -5. The time now is 07:48 AM.
Copyright 2006-2017 Crohnsforum.com