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So Scared, possible Rectovaginal Fistula - questions?

I am new here. I am so stressed out and worried and don't know where else to turn.

I am a 45 yr old female here in Canada. In Feb 2012 I began experiencing intermittent explosive (and unpredictable) diarrhea. Thought it might have been a side effect of meds I was taking (Zoloft) so dose was decreased. By the summer of 2012 the diarrhea was getting worse. I went to see my family doctor and requested a Colonoscopy. Easier said than done, the process here is to be put onto a wait-list to first see a GI Specialist and wait-list is long. I finally got called to see GI Specialist a couple of weeks ago and am scheduled for Colonoscopy and Gastroscopy on Monday (Jun 24).

Sometime in the spring of 2012 I began passing gas (rectal gas) through my Vagina. Of course I shared this with my family doc (GP) but she just quickly attributed it to my having decreased tone to muscles of pelvic floor - which I did not agree with (I am an RN by the way). I tried to explain that the gas I was passing was odorous, like rectal flatulence (farting). I did my own reading up and was concerned about possibility of Rectovaginal Fistula. She brushed that off stating if that's what I had I'd be passing stool through my vagina.

This has been most frustrating, I know my body. I know when something is not right. I know the difference between just "air" coming out of the vagina and actual smelly flatulence.

Now in Nov 2012, I began experiencing fecal incontinence (only rectally). It would happen when I'd get very sudden abdominal cramping and literally had 10 seconds to make it to the bathroom. Sometimes I just couldn't get there fast enough/get my pants undone fast enough. It was like I didn't have very good anal sphincter control. Never before in my life have I had diarrhea and not been able to make it to the bathroom so to me this was different and indicative of something else.

My GP just figured (without doing any testing) that I must have "IBS."

So I finally get into see GI Specialist a few weeks ago, I explain my entire history and symptoms. He schedules me for Colonoscopy and Gastroscopy, says I may have IBS. Told him that years ago, as a totally incidental finding, I was told I had diverticulosis. Told him, too, about my concerns re: having a possible RVF (fistula). He sort of blew it off too for at that time I was not passing stool through vagina.

On Jun 6th when having a rather severe bout of abdominal cramping, I again couldn't quite make it to the bathroom in time and I had some fecal incontinence of diarrhea rectally (as noted on the pad I wear) PLUS for the first time ever, I noted a small amount of liquid stool further up on the pad, from my vagina area. I was mortified, trying to tell myself that maybe it wasn't from vagina...but I took a piece of toilet paper and rolled it up tight like a tampon and inserted into vagina and sadly there was liquid stool on it.

I immediately let GI Specialist office know of this new development. As a result, specialist arranged for me to have a special/urgent Contrast Enhanced and Endovaginal Ultrasound done; had it done about 4 days ago. As the U/S Tech knew I'm an RN, she told me (when all tests done) that it showed I had:

1. thickening to the end of my small intestine, commonly seen in ppl w/ Crohn's.
2. something "abnormal" lower down to where a rectovaginal fistula might be.

She said to me, "it will be interesting to see what the Colonoscopy shows."

As you can imagine, I am terrified and am imagining the worst. I am fearful of having cancer.

I would have never thought I had Crohn's - I had stool for Occult Blood done several months ago and it was negative. I surely have not had any weight loss (I wish!). I get diarrhea about 3 times a week......there is no rhyme or reason to when I have it....it doesn't seem to correlate whatsoever with what I eat or when I eat. I have ruled out any food sensitivity to eggs, dairy. Tried probiotics with no improvement. Have tested negative for Celiac. They did stool testing for things like infection, ova & parasites, clostridium, all negative. I did try Imodium and Questran for the diarrhea but both made me constipated which was no picnic either so stopped those.

A few days ago I had diarrhea and in the toilet I noticed what appeared to be a large clot, though not red in color. I've been paranoid that since having Stool for OB tested months ago, that maybe I AM having blood in my diarrhea that I just can't obviously see. I know it's TMI but I took some toilet paper and tried to inspect this marble sized mucousy clot....it wasn't blood.

I am just a nervous wreck. Perhaps it's due to being a nurse but I am fearing the worst. I don't feel that my diarrhea and symptoms are bad enough to be Crohn's but maybe I'm wrong? I keep thinking maybe it's cancer.

There has been a large natural disaster where I live and the hospital where I'm having the colonoscopy done on Monday is cancelling all elective surgeries and non-urgent procedures. The GI Specialist's nurse cancelled everyone else's tests for Monday but told me she didn't want me to have to wait until August to be rescheduled. I sense that perhaps she's reviewed my U/S reports (she confirmed she has them and will ensure GI Specialist reviews them prior to doing Colonoscopy) and there may be info I'm not aware of that's caused her to feel that it's critical i get these tests done ASAP.

I sometimes also notice, like today, that when I rarely have a formed stool, it's much thinner than normal......and that concerns me, too.

Thanks for any support or experiences you can share.

Lisa :sign0085:
Hi Lisa, I have just about all your symptoms. I, too, feared to worse. But after a colonoscopy I was diagnosed with mastocytic enterocolitis, caused by food allergies. I feel a little silly because I know so many on this forum are so ill, but this is a form of IBS that may or may not respond to meds. We will see. At any rate, a weight was lifted off my shoulders and I want to try to put your mind at ease a little. I believe they didn't put off your procedure because you have already suffered so long with your symptoms.
Chin up! I'll be thinking about you. Karo
Hi Karo,

Thank you so much for taking the time to respond (((hugs))).

So in your case they were able to tell JUST from doing the colonoscopy that you have this type of enterocolitis? So how did you go about determining what kind of food allergies you have?.....or have you? If you have, what foods are you allergic to?

Hi, Lisa, First the doctor said diverticulitis, but he had taken tissue samples and run particular tests that showed an excess of mast cells. The sample tests are the only way to tell this, because the colon looks normal. I am still trying to learn about this. It was about 4 days before they called me about this. I am taking the meds, but still have most symptoms. I will meet with him soon to discuss allergy testing. Many years ago I test allergic to several foods but had allergy shots and haven't had any problems for a long time. But those symptoms were respiratory so I don't know if this is related. and I LOVE to eat :)

I hope everything works out well for you. I will keep you in my thoughts. I think it is so bad you were on that waiting list!!

Good thoughts,Karo
Hi Lisa,
I have the same symptoms and have a recto-vag fistula and a rectal stricture. My fistula was never found with colonoscopy it was noted as possible on an mri and found during a seton placement for a rectal fistula. It sucks and I hope you don't have one. If you do though please know that you will persevere and learn what you need to do to deal with it. Eventually it becomes part of every day life and not so bad.

Its hard for some people to talk about but if there is anywhere to do it its here. Good luck, let us know how your tests go.
I hope everything turns out better that you are imagining. I had cancer almost 4 yrs ago in my right kidney, and when I was diagnosed, my Mom said '"Don't let fear in!" I never did. I trusted God that I would be fine and I had surgery on my kidney removing the tumor and here I am in remission for four yrs. Worrying never helps at all. Believing positively helps the most!
Hello Lisa,
Have you been able to find anything out about your possible Recto-Vaginal fistula? I see you posted this back in 2013. I have been suffering with one as well since around 2005. Not exactly sure when it started as I did not know what was going on and had to diagnose myself and finally the doctors were able to diagnose it. Although it has never been seen on any images I believe because it is so low. The dye used for one of the images did leak through the fistula and the tech was able to observe it and and made a note of it. My GI has since done a sigmoidoscopy with dye and he inserts and tampon and they observe the leakage that way. I was diagnosed with Ulcerative Colitis in 1986, in 1996 I had J Pouch surgery at the Mayo Clinic which was to "cure" UC. About 4-5 years later I started having pouchitis infections. They now say I have Crohn's due to the development of the fistula. They have tried closing with Humira, Remicade, Infectra and I take a 50 mg Azathioprine and an antibiotic every other week for 3 days (Flagyl) as it makes me to nauseous to take any longer. Nothing has helped to close the fistula. I saw a surgeon they only recommend being diverted to a bag and possibly after a long period of time and continuing with Remicade or possibly Entyvio look at some type of repair or fistula closure (flap) if it has not closed on its own. She also thinks it will require some reconstructive surgery of the vagina and reconnection is a very low chance without another one developing. I know your pain and it can be very depressing. Sex is very painful, It is starting to prevent me from doing so many things I love to do. Long hikes, boating, traveling just because it can be so hard to plan around and have everything you need or to even find a restroom. I hope this is not what you have but the symptoms sound so familiar. I to started out passing just gas or small amount of stool only with exercise like sit ups but I now pass stool daily and use the restroom 15-20 times a day. If you have found anything that works I would love to hear about it.