Question for the girls

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New Member

Date Joined Oct 2005
Total Posts : 18
   Posted 2/12/2010 6:58 PM (GMT -6)   
Has anyone experienced a retrovaginal fistula?  If so what were the symptoms?  I can't quite determine if I have a fistuala or it is just all related to my period.  I am passing bright red blood and dark material which could just be lining.  There is no pain or bad odor.  I have next to nothing on my pads which is unusual for me during my periods but then again with all the steriods my periods are kind of out of whack anyway.  If I use a tampon there is alot of brown material on it.  
Any info/experiences you ladies could provide would be great.
Also, how do you deal with intimacy if you have an issue like this?
Diagnosed with Crohns in 2006 at 43, sudden onset.
09/2009 Colonoscopy showed inflammation in the terminal ileum, rectum and all over entire colon.
Meds:  Prednisone 40mg with 5mg taper per week, Lialda 4.8g, B-12 tablets, Folic Acid, Calcium +D, Humira, Prilosec
Sulfasalazine, Pentsa, Colazol, EntocortRemicade, Cipro, Flagyl
Hospitalizations:  Jan 2010 for uncontrolled flare.

Veteran Member

Date Joined Feb 2009
Total Posts : 7150
   Posted 2/12/2010 7:09 PM (GMT -6)   
I'm pretty sure Eva Lou over on UC has one...feel free to pop on over there and page her. It's rare for UCers, though. I'm sure she'd be willing to share some info.
Co-Moderator, UC Forum
Status: Remission since May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son
Diagnosed with pancolitis on 1/30/09
Meds: Apriso (4 0.375g pills ONCE!! daily), mesalamine enema twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, multivitamin.  Used prednisone (starting dose 40 mg) to get into remission.

Regular Member

Date Joined Jan 2010
Total Posts : 221
   Posted 2/12/2010 11:26 PM (GMT -6)   
I've never had a fistula there and I often have a period that starts or ends that looks like brown blood ... kind of freaks me out. But I think the pad or the cotton tampon can absorb some of the color or the fact that maybe when the flow is light maybe it doesn't flow onto the pad or tampon right way, somehow oxidizing (due to some air exposure) ... wine does this and turns color. I've been in the wine industry for a long time, so this is why it hasn't bothered me. I'm on steriods now and have none of these symptoms now.

If it is just during your period this is an important point to mention to your doctor. As I've not had one, so I can't talk about how one IS ... sorry.

I"m sure others will have ideas too ...

Hope you get it figured it out!
44-single mom diagnosed with Crohn's 2004 via pill camera    6MP kicked into remission (along with modified diet) so went off in 2006.
2009/2010 acute flare and hospitalization - now on Imuran. Currently taking 55 mg prednisone.
Current problem - protruding thrombosed hemorrhoids (external as well as internal).
Fibromyaglia; migraines; herniated disks C5,6 and arthritis in neck; asthma; scolisis in back/arthritis.

Regular Member

Date Joined Jun 2009
Total Posts : 354
   Posted 2/13/2010 12:06 AM (GMT -6)   
I've never had a fistula either (am I even spelling it right? sorry!! )

But I've done the Prent one to many times, and oh boy did it ever mess my periods, sometimes I'd get it every 2 weeks and when this happen I had exactly what is going on with you. Definitely talk to your doctor about it when you can. In the mean time try not worry to much in my opinion it's probably the steriods.
Once I stoped completely(steriods) my periods went back to normal (too normal as I have endometriosis!!)
Good luck, hope you start feeling better and maybe you can get off the steriods!!

Veteran Member

Date Joined Feb 2009
Total Posts : 529
   Posted 2/13/2010 1:10 AM (GMT -6)   
Brown blood is just old blood and the dark material is lining from your uterus shedding- both completely normal. You can ask your doctor if you want to be reassured, but if there's no smell or odor, I don't think that there is any reason to be concerned.

Elite Member

Date Joined Feb 2004
Total Posts : 20558
   Posted 2/13/2010 2:08 AM (GMT -6)   
with the end of your period causing the brownish color, there is typically an odor that goes with that....if you're unsure then definitely talk to your doc....I hope it turns out to be nothing though.

bee propolis caps 500mg one cap twice/day
omegas 369 caps one cap twice/day
probiotics 10 billion cfu once/day
vitamins C-calcium ascorbate (easy on the gut) and vitamin A each once/day
Prodiem fibre supplement one cap before bed
I've also altered my diet (no junky stuff at all, processed, fast-foods, refined sugars, ect) and exercise regularly.
I went from 30+ bloody BM's/day with lots of lower back pain to an average of 5/day no bleeding no back pain and completely formed stools, still have severe urgency issues.
~~~~~~~~My bum is broken....there's a big crack down the middle of it! LOL :)~~~~~~~~

Regular Member

Date Joined Feb 2008
Total Posts : 493
   Posted 2/14/2010 9:47 AM (GMT -6)   
I had a serious issues with r-v fistulas. If you suspect it, please go see your gyn immediately and often. This is a very real condition and a lot less rare than people think. (Oprah even has a Fistula Foundation for young African women who develop such fistulas from child birth and the lack of good medical care.

Mine were horrible--literally pooping out my vagina. :( At first, my gyn and GI just thought I just had a lot of discharge. I'd wish I'd been more vigilant and asked my gyn to really look earlier on--I only saw her once a year--how could she suspect it? I had peri anal and vaginal abcesses and should have been much more suspicious of the discharge and discomfort. Sitz baths with hot water and salt were very helpful and often stopped the discharge (sometimes brown, sometimes yellow). My biggest clue should have been all the gas and air I began to pass.

However, when the disease was controlled with 6mp and pentasa, the r-v fistulas dried up and was inactive for years. Unfortunately, I became allergic to the 6mp, the disease got the best of me, and the fistulas were so bad that the wall between my rectum and vagina was a mess, my rectum perforated.

Controlling the diarrhea is key and there are some great meds that help with fistulas--humira is supposed to help.

I'm happy to report that with the removal of my rectum, anus, and colon, the surgeon as able to repair the vaginal area completely and I'm a much happier gal (so's my husband!).
24+ years with Crohn's/colitis; fistulizing crohn's; ileostomy and proctocolectomy; TPN, propranolol and xanax; anemia of chronic disease

Regular Member

Date Joined Jan 2007
Total Posts : 184
   Posted 2/15/2010 5:59 PM (GMT -6)   
I had a vaginal fistula and a rectal fistula but the 2 of them never connected. Now from what I have learned about the retrovaginal fistula is that stool can pass through your vagina and even gas. They did a test were some sort of dye was injected into the fistula in my rectum to see if it was going through to my vagina and it didn't
Crohn's and Ostomy in 2004

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 2/15/2010 6:24 PM (GMT -6)   
I've had an "unconfirmed" r/v fistula for about 7 years. For the first 6 months or so it was extremely painful. At the time my Gyn didn't take it seriously and only did a visual exam. He couldn't see anything so it didn't exist. After a time the initial pain and discomfort went away. Now I pass gas frequently from my vagina and stool sometimes. I don't have pain anymore, but if I am having a lot of D I will have a "flare up", where I get very itchy, almost like a yeast infection but not. After not being taken seriously by my Gyn, I changed doctors, and found an anti fungal that works for my flare ups. BUT, I wish I had been more pro-active when it first happened.I now have a permanent hole that I shouldn't have simply because I wasn't vocal enough.

Don't let your doctors just tell you it doesn't exist. If you are having pain and you don't know why, keep after your doctors until you have an answer! And if it is something different with your period and not CD related, it is still something that you want to find out about.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

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