Crohn's Disease Forum » Support Forum » Undiagnosed Club » Can't find signs of chron's but have a fistula

03-09-2012, 08:02 AM   #1
New Member
Join Date: Mar 2012
Can't find signs of chron's but have a fistula

Hello everyone. A friend told me about this group and I am glad to be able to ask some questions if you don't mind.

A little background on me. I have gastroparesis, colonic inertia and pelvic floor dysfunction. My gi system is already a pretty big mess. My diet consisits of mashed potatos, chicken noodle soup and crackers...and that is on a good day. I have lost almost 60 pounds so far and things aren't getting any better.

2 weeks ago a noticed diaherra leaking from my vagina(sorry tmi). It happened twice. The last time it happened I had terrible pain in my pelvic area and along the right side of my belly. Went to 2 ER's, my GYN. had a sigmooscopy and a colonoscopy yesterday and they can't find the fistula. I have a test next Friday...a vagiogram(sp?) to see if we can find the fistula.

Colon looks normal, no chron's there but I wonder about small bowels now. Not sure about this fistula. Don't know why we can't find it. I ran a fever a couple of days after the second leak but not since then.

Are these fistula's that hard to find? Is it always related to chron's disease?

Thanks for the help. Really feel lost about this. I have a great GI dr. taking care of me and a GYN. Just wish we could find the fistula.

03-09-2012, 09:17 AM   #2
Senior Member
SarahAnne's Avatar
Join Date: May 2011
Location: Panama City, Florida

My Support Groups:
Sheila, I'm so sorry! I've never had a rectal or vaginal fistula, so I'm not really sure about how easy or difficult they are to find. Seems to me if it is leaking it wouldn't be too difficult to figure out where it is, but I'm no doctor!

Fistulas are very common to Crohn's disease, I've had several over the years connecting my small and large bowel. I have no idea if they can occur with another medical condition, someone else may be able to answer that one.

Are you on any meds for it, or the other GI problems right now? If it's not Crohn's, does the GI have a guess as to what it might be?

Good luck with the test on Friday, hope you get some of the answers you're looking for.
Dx'd Crohn's April 1996
Bowel Resection w/appendectomy Oct 1996
Gallbladder removed Nov 2005
4 procedures in March/April 2010 to remove a kidney stone
Dx'd Dyshidrotic Eczema April 2011
Dx'd Pancreatitis July 2011
2nd bowel resection 10/12/11 - I have 130cm of small intestines left!
Dx'd Chronic gastritis April 2012

Currently taking:
Cholestyramine powder 1-2x daily
Remicade 5mg/kg every 8 wks
Vitamin D3, B12
03-09-2012, 12:32 PM   #3
Super Moderator
Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

My Support Groups:
Hi Sheila, welcome to the forum. I don't know much about fistulas, but I would recommend that you check out the Fistulas & Abscesses sub-forum to see if you can get more info there.

I can tell you that I know of two people on the forum who were diagnosed with Crohn's based solely on the fact that they have fistulas, so that leads me to believe that fistulas pretty much do only occur with Crohn's. I believe that both people I'm thinking of are now on Remicade and their fistulas are healing. I don't know of any other meds besides Remicade that can heal fistulas (again, the Fistula sub-forum would probably be a better source of information than I am able to be!).

Oh, and no need to apologize for TMI - on this forum there is no such thing as TMI! Good luck with your test next week, I hope they are able to figure some things out and get you all healed up again soon.
03-09-2012, 01:55 PM   #4
PsychoJane's Avatar
Join Date: Mar 2011
Location: Quebec

My Support Groups:
Hi Sheila,
I'm not too sure if you have already been diagnosed with crohn but actually show no symptom in your colon or if the Crohn some diagnosed for you as of yet?

What I can tell about the fistula is that, if you are a Crohn sufferer, it's highly probable that this would be the cause. It could maybe be linked to the small bowel even though it's a bit less common to have small bowel to vagina fistula than it is with rectum to vagina.

If it is not from the Crohn, there are other possibilities that can lead to fistula but the occurrence is less frequent. Fistulas can be observed in diverticular disease, post childbirth, surgery complications that you could have had in that area in general, certain cancers and less commonly from an perianal/vaginal infection.

I don't know why fistula are hard to find... sometime the track is kinda to small to show properly. I do have enterocutanneous fistula that are around my ostomy. I got a Ultra sound to see if I had an abscess and they were telling me nothing was wrong, that I had no fistula (thing is that with enterocutanneous fistula you know for sure that they are there since they surface at your skin....). Well apparently they just can't see it on Ultra sound but a tiny tiny track. They on Ct-Enterography, they apparently could almost not see them (I have like 4 of them. 2 actives, 2 inactives). So... It's not because they can't see them, that you don't have them.

Just wondering, did they prescribed you antibiotics? It is usually the first line when it comes to the treatment of fistulas (maybe they are just waiting to confirm it). Then the best treatment options are Remicade as Cat said but know that humira works great for them too.

Hopefully they will find what is wrong quickly so you can get better.
Diagnosed UC 1999 then refractory CD.
Past Meds: Prednisone, asacol, cyclosporine, cyclophosphamide, mp6, Humira

Currently taking: Omega-3, D-3, med-free for the time being.
~~Oh! n sorry if what I write seems strange at times, English is not my main language!~~

You'd like to chat and feel facebook would ease this point,
send me a private message and i'll do so =)
03-09-2012, 09:16 PM   #5
New Member
Join Date: Mar 2012
Location: Syracuse, New York
I NEEDED to find this group - and searched all day on the computer. I have a rectovaginal fistula leaking feces and gas. It resulted after a hysterectomy and it is unclear if came during surgery or there was an underlying problem before the surgery.

I had digestive problems for over thirty years, but was ignored before and told that it was a problem that would go away if 'I would relax.' Anyway, what a perfect group - mis-diagnosed.

Anyway, now with the fistula, at least doctors have to listen. I have PERSISTENTLY sought help from five doctors. One surgeon says he may remove a damaged part of my colon, but I am not sure if that's the right thing to repair the fistula based on all my Internet research.

Anyway, if I had not found this board, I don't know if I could have gone on. I am so alone and isolated. Please write me at [email protected]. THANK YOU.
03-10-2012, 06:55 AM   #6
Senior Member
Grumbletum's Avatar
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Hello Helpneeded, you are very welcome and glad you found us :-) Lots of us can appreciate the frustration and fear when the road to diagnosis is a long one.
Tell me, have you ever had testing for the digestive problems you have and if not, will they do some now that they've found a fistula? Have they prescribed meds or, because you've not been diagnosed with IBD they're not considering that option?
Let's hope now they've finally found it they can get you sorted :-)
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
03-10-2012, 07:05 AM   #7
Senior Member
nevilletanner's Avatar
Join Date: Feb 2012
Location: neath, United Kingdom

i have seen this before , my mother had the same symtoms as you, but on top of this she also showed symptoms of senile dementia - turns out the dementia was being caused by a infection of the bladder caused by Diverticulitis.

take a look on GOOGLE theres plenty on there about this and apparantly its quite common.
my mother ended up having surgery 3 times for this.
first time was to remove the divert between intestines and bladder also to create a stoma to rest the intestines.
then she had Peritonitis due to a perforation on the stiches,
3rd time was to remove the stoma , no probs ever since.
03-10-2012, 08:45 AM   #8
New Member
Join Date: Mar 2012
Location: Syracuse, New York
My digestive problems started when I was 14 and I'm now 52. When I went to doctors over the years, they did not do any tests. It was when I was a teenager that I had a lot of weight loss and was so sick I would collapse on the bathroom floor. Since NO doctors would help me, I just tried to eat very little because it seemed that I could digest nothing. Then, I started to live a more and more reclusive life so I wouldn't have to be anywhere and get embarrassed by gas and diarrhea.

So I just don't know what was going on prior to the fistula. Since the fistula, I have had sonograms and a colonoscopy and they send me away saying they can't find the fistula. So far no help from doctors. I research on the Interent and found a procedure where they insert one thing in the rectum, use a tampon and dye, and check the vagina. I am suggesting this to doctors, am tired of having to tell them what to try, and actually read about this procedure in the Singapore Journal of Med. Do American doctors need to catch up with the rest of the world?

Crohn's Disease Forum » Support Forum » Undiagnosed Club » Can't find signs of chron's but have a fistula
Thread Tools

All times are GMT -5. The time now is 10:10 AM.
Copyright 2006-2017