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08-25-2012, 12:34 PM   #1
Jimena
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Recto-vaginal fistula?!

I have most likely fistula in my perianal area. I have an MRI, it didn't show it 100% sure and it showed possible Bartholin cyst (i'm not sure did i write it correctly) near my vagina.

My situation gone better eith Humira.

WARNING: TOO MUCH INFORMATION...

Today i had my first BM since 5 days. I wipe normally and notice that i have something in my girly parts. I wiped, and it was stool and blood! Got scared and just rushed in to the shower. I have scheduled colonoscopy in November and GRS will check my butt at the same time.

How do you know you have a fistula? I have lower back pain. I did have few weeks ago 3 days pain in my girly parts, like some one is stabbing me with a knife. But it last only 3 days and i didn't thinks about it since..

What should i do? How do they check if it is a fistula? Will GI do it or GYN?

I mean, i think there is no way the stool can get in my lady parts unless there is a fistula?!

Ou man, i don't know how i can get through this...
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Severe Crohn's since 2002. Tried every longterm medicine there is, Pentasa, Azamun, Remicade, Humira...
Temporary colostomy 2013 -> Parastomal hernia
Surgery, mesh, end colostomy 2014 -> deep wounds that didn't heal, three fistulas around stoma
Colon removal and ileostomy 2015 -> So far so good

And after every stoma surgery, nasty Pyoderma Gangrenosum around my stoma.
08-25-2012, 01:56 PM   #2
Sailorluna
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Hi Jimena,
My recto-vag fistula was found by the colorectal surgeon while he was placing a seton in a peri-rectal fistula. I don't know of any other way you can can stool in your vagina really. Have you passed gas through there? It feels strange but is a pretty strong sign.

For me there is some time sharp twingy pains in my fistulas - they don't last long and are just sporatic.

My GI won't have anything to do with my fistulas - they tell me that it has to be looked at by the cr surgeon. You may want to call your GI and let them know - perhaps they will move up your appointment.
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Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
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B12 injections (monthly)
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Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
08-26-2012, 05:18 AM   #3
Mooch
 
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I feel for u, mine was diagnosed as a bartholin gland originally. My perianal fistula healed with remicade but struggling with a rectovaginal one now. It leaks constantly but not too gassy now. Air used to escape at the most inappropriate times.... Uncontrolable!!!! I have a seton thru it to keep it draining and another one thru a failed LIFT incision. Nothing is too much info pn this site, it has helped me so much in dealing with it. Keep reading and posting as it honestly does help. Recto vaginal fistulas are shit (scuse the pun) and it interfers with my day to day life, but u WILL adjust. Let me know if u need any info or someone to help.
08-27-2012, 05:51 AM   #4
Jimena
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Thank you so much for your answers!!! I am terrified. I am not sure have i pass gas thru down there.. How do you know?

There haven't been stool coming out there last two days. I think that my constipation for 5 days was the reason it burst out from the wrong place, there was so high pressure in my rectum so it came out from wrong hole!!!

I haven't call my GI yet.
08-29-2012, 10:01 PM   #5
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I'm sorry you are dealing with this. Please call your GI. the faster you get on to treating this--even if it's just day to day management-the better. I dealt with several r-v and peri anal fistulas for 20 years. My case ultimately led to perforation of my rectum and rebuilding of my perineum. Treatments are more advanced now and a biologic could help. Your GI, GYN, and colorectal surgeon may all be able to help. You are not alone. Please call your doc and keep us updated.
09-06-2012, 10:07 AM   #6
smallfry
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Hi Jimena,
A surgeon is best to see for this and your GI will usually refer you to one. So, you should probably call your GI to get things moving as you will most likely have a wait to see the surgeon as well. You totally described an abscess popping and turning into a fistula tract.
Hope things calm down for you. If you feel that stabbing knife pain again it probably means that it's abscessing again and you should do warm stiz baths to help with drainage and call your doc again.

Last edited by smallfry; 09-07-2012 at 05:39 PM.
09-12-2012, 08:58 AM   #7
Ablett20
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I have recto-vaginal fistula more so then recto. Mine presented like an absess which the local GP lanced open to drain due to excessive pain. I was then diagnosed with Batholins Cysts anf had then marsupialised (spelling is horrible). They returned and I was diagnosed with fustula. Once again WARNING: TO MUCH INFO but my surgeon describes it as "watering can butt". I current have 2 fistulas, one with a seaton which in my opinion is gross but I can deal with it because it is less painful than an infected fistula. My dr tells me the humira with eventually control them
10-05-2012, 10:34 AM   #8
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Hi all,
Gyno found fistula and I had all kinds of tests that were negative. However that means nothing because mine they say is small so that is why test is negative. I leak out through vag area yellow color discharge all of the time. Flagyl gel for 5 days helps but I cannot stay on it forever. I take Prednisone and just started HUMIRA 2 weeks ago.

I have some gas once in a while come out and thank god no pain. Just darn discharge so now I take stock in mini pads

How long are you on HUMIRA? I am so anxious to see if mine gets better to avoid surgery. Remicade did not work for me at all.

DO NOT wait to call your GI!!
10-05-2012, 11:54 AM   #9
Jimena
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I have yellow-ish discharge leaking in my vag all the time too! Could this be from fistula? I didn't realize that..

My other buttcheek got ache when i sit more than 1 hour. Something is def happening in down there.
10-05-2012, 12:01 PM   #10
smallfry
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did you call that doctor yet you?? Don't be scared, I know it sucks to be poked and prodded there but it has to be done girl!! If you don't call soon it will get so bad you will be sorry and my end up with a temp. ostomy like me hun. Please call, because you will still have wait times for tests and what not... the quickest is the ER if the pain gets bad. Are you running a fever? Please see a GI or GI surgeon not your GP. Or call your OBGYN if you are more comfortable there. Just a concerned friend...
10-05-2012, 12:46 PM   #11
Jimena
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smallfry,

I did'nt call yet. But i will monday, i have colonoscopy 19th Nov, if they can do some other testing at the same time because my test is done under anesthesia. So i will call and ask if they can have surgeon there at the same time and do some her own examination.

my vagina leaking some yellowish discharge all the time, i don't have pain in there. Haven't have fecal discharge anymore, im glad fot that. That thing near my anus (weird cut what leaks too) is more irritated and wiping hurts and theres quite lot of blood.

I dont have visible abscess in my butt cheek,but it aching when i sit long time. My work is sitting in front of computer 8 hours a day...

But i will call GI monday, i will let you know. I don't want any surgery around that area, that's for sure. I rather choose temp. ostomy, i just can't stand idea of surgery down there, BM's and eveything.. Hhrrrr.. Painful, too painful.

smallfry, how are you feeling now???

Edit. I have been using Humira for 5 years now, got these fistula-proplems when i got off Humira after 3 years. Started it again year ago, i take 2 shots every two weeks.
10-05-2012, 01:02 PM   #12
smallfry
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I'll be checking on monday to make sure you call, haha so there!!

I am much happier with the temp. Ileostomy already. I was always scared to poop cause of the pain from abscessing. Now it's just pain not extra pain However, I'm a little pissed at my docs at the moment as my surgeon did not drain anything during my ostomy surgery so now I have to go back tuesday again as there is another one or the same one I don't know. GI says it's abscessed and surgeon says its perianal disease progressing/scar tissue, MRI says abscess so we need to figure it out! bla bla bla right!

If you are draining good you may not need a seton for your fistula. But keep an eye on your butt cheek as things could be spreading sorry to say. Check for fevers and if it starts stabbing and throbbing bad I would say it's abscessed. Heat will help draw out the infection...

keep me posted!!
10-05-2012, 06:19 PM   #13
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Hun your situation is different then mine in some respects. I already had Barium Enema Test at hospital and saw 2 Gynos... they say mine is small and no surgery indicated at this second but if my weight does not improve, or if fever starts or discharge does not stop I will need the bowel resection. So far no meds have worked for me. Waiting on Humira to see how it goes as I just started. No pain or abcsesses so far for me. Yellowish discharge drives me nuts every day though so I get what you are saying.

Please call your GI.... let me know how you are doing too please
10-08-2012, 01:22 PM   #14
smallfry
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Checking in... did you call the doc my friend?
10-09-2012, 08:36 AM   #15
Jimena
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smallfry I did call, though my GI wasn't there, she is at the hospital thursday of friday and give me a cll then. Huuh.. Nervous..
10-10-2012, 11:26 AM   #16
smallfry
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It's better to find out then leave it. Try not to be nervous, it will be ok. You have us here to try and help ease any feelings of being alone since many of us have been thru it. Nerves are normal, remember to take deep breaths, they really do help. Breathing helps me stay a bit calmer. Good luck, I'm so glad u called and iff you don't hear from them Thursday you should get on the phone fridayto make sure!!
10-10-2012, 11:38 AM   #17
Jimena
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Thanks smallfry, you are so wonderful!

I had pain in my butt and ´stomach yesterday all day. Ouch. BM's hurt like hell! If they don't call tomorrow, i def call them on friday!

Why am i thinking that pain is like a friend, like "there is going to be pain always, suck it up!". Am i masokist? Why i feel like if i call doctors, i bother them and feel like i'm whining over nothing? Am i crazy? Everytime i go to hospital doctors say why you didn't come earlier?! Yep, you tell me!

10-10-2012, 12:31 PM   #18
Lisa
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Why am i thinking that pain is like a friend, like "there is going to be pain always, suck it up!". Am i masokist? Why i feel like if i call doctors, i bother them and feel like i'm whining over nothing? Am i crazy? Everytime i go to hospital doctors say why you didn't come earlier?! Yep, you tell me!

NO - you are NOT crazy, you are a FINN! lol ..... I'm the same way, so is my Mother (she is Finnish!).....
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10-10-2012, 12:42 PM   #19
Jimena
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^Hahahaha That's propaply true, that's to Finnish SISU as we call it, you must heard from that from your mother? That comment just made me laugh and my hubby ask me what the hell am i laughing alone with the computer
10-16-2012, 12:22 PM   #20
smallfry
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Me again!!!! Well... how are you doing?
10-21-2012, 03:21 AM   #21
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My story is almost identical. I also started out with a bartholin cyst, and then eventually a rv fistula. After 6 years of no idea what was gong on, I finally had surgery in June. Still healing. Hope you are doing better!
10-26-2012, 12:11 AM   #22
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When I had one it was on the side of my Va jj...and it was HUGE like hemorrhoid  got confused and walked over to the side of my bum...it took them three times to lance that thing, and drain and then I had to go to the wound clinic everyday so it could "heal from the inside out...it was gross! way grosser than the holes in my scar after my small intestine perforated! UGH, I am so sorry, Humira rocks, go to your B-scope! make sure everything is good...sounds like you may have more going on! ((((HUGS))))
11-05-2012, 04:55 AM   #23
Jimena
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Hi all, thank you for responding!

I really think i do have fistula in my vag area. Last time i experience fecal coming out thre was when i had terrible constipation what lasted 5 days until i went to BM and i think that pressure opened that fistula.

Just 5min ago i had BM, diarrhea, and now i am 100% sure that i leaked fecal matter out of my vagina! i check, and check that over and over again and yep, it comes somewhere quit deep in there. I am so frustraded! I use Humira, 80mg every other week, for nothing! I have been using Humira since 2007 so it just has stopped working for me.

In Finland, we don't have any other biological drug for Crohns right now. Cimzia is not allowed for crohns yet

So what next?
11-20-2012, 04:35 AM   #24
Jimena
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I had my colonoscopy yesterday. My rectum is inflamed and there was a strange hole in my rectum what they think is fistula opening. :/ I am going to see surgeon an OB/GYN who exam my vagina if there is other opening too because i have had fecal discharge from my vagina.

This sucks!!!!!

Have you been on GYN? what exams they do to you if they are looking for fistula?? I'm so anxious about that.
11-20-2012, 09:57 AM   #25
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Have you been on GYN? what exams they do to you if they are looking for fistula?? I'm so anxious about that.
I was given a pelvic exam with a speculum, and a pelvic MRI to diagnose the fistula. I have had a cat scan with a contrast given like an enema to look for fistulas, and examination under general anesthesia. The Pelvic MRI and exam under anesthesia were effective at finding the fistulas. In the CAT scan, nothing showed up. In the physical rectal exam, there was drainage visible. It was prett tough getting a definitive diagnosis on the fistula, due to the location it wasn't always viible in tests.

Don't get discouraged if it takes your doctors a few different tests to find the exact location of your fistula. I had a very similar issue in finding and treating mine. At first, i thought my doctors were going to think I was imagining the fistulas, and it was all in my head.
11-20-2012, 01:10 PM   #26
Jimena
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They did MRI to me about year ago, it didn't show much, expect something what they thought was Barthol's cyst. I think it isn't that.

Year ago they didnt see fistula in colonoscopy but now they saw something, hole what they thinks was that fistula. Is there surgery what is effective in RV-fistulas? I haven't have a abscess there, not that i noticed.

I am really affraid of surgerys down there. I think temp ileostomy would be better idea..
11-28-2012, 10:38 PM   #27
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I was thinking you could ask for an EUA, examination under anesthesia if it is too painful for an exam.
12-06-2012, 10:09 PM   #28
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Hi Jimena, I had a recto/vag fistula plus a fistula with the bladder. What healed my R/V fistula was having a temporary colostomy. I was only supposed to keep the colostomy for 6 months but felts so much better just having it, so I didn't have it reversed for about 5 years. I've had it reversed now for about 10 years and had surgery to fix my bladder fistula. I have been on Remicade now for about 4 years and have been doing fairly well, except now I have just recently had a fistula develope to the skin on my belly. My doctor is now thinking of putting me on Humira. So far I haven't had any more troubles with the recto/vag fistula. I hope this is somewhat helpful to you!
12-26-2012, 06:02 PM   #29
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Please take all perianal abscesses seriously,they can lead to anal cancer.After 20 odd years of perianal abscesses I developed anal cancer,my Oncologist told me it was a direct result from all the abscesses over the years.
08-19-2013, 04:46 PM   #30
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Hi Everyone,
I'm new here and really need to talk to someone that understands what I'm going through!
My name is Becky and I'm 40 years old from the UK.....

I had an infected Bartholins gland with a painful cyst that would come and go, so I had it operated on 5 years ago.
Not long after the op I noticed poo on the tissue after wiping myself (yuck!)

After a year of every test going the consultant diagnosed me with Crohns and a anal/vaginal fistula and i'm taking 100mg Azathioprine a day.

I had a seton stitch put in 2 and a half years ago and it's still there! I'm waiting for my op date......

I haven't got a clue what they are going to do, I'm worried sick they will make the tunnel worse and I'll end up being in more of a mess than I am now.

I have this horrible piece of string coming out my bum and up my vagina, the knot often swings around and I have to pull it out my but (sorry TMI).
It's not painful at all but I feel so unsexy (luckily it doesn't bother my hubby at all)
The hole seems to be getting bigger to me and I now pass wind through it. I'm so embarrassed about it all.

Please can you let me know what's happened to you all the last year since the original post? Have your fistulas healed, what have you had done? what's a head of me!?

Thanks sooo much for listening!

Last edited by Beccy; 11-10-2014 at 03:38 PM.
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