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Christine1946
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Date Joined Aug 2008
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   Posted 11/5/2010 5:22 PM (GMT -6)   
     I've had some very distressing symptoms lately and after reading about the symptoms of an r/v fistula, it fits my symptoms like a glove sad .
     I was never diagnosed with Crohn's but had a very diseased rectum, so says my colorectal surgeon.  I've had two CT scans of the abdomen and pelvic area which were negative.  In September the surgeon drained a hematoma in my anus and placed me on a regimen of antibiotics.  However, the same feeling has come back again.  I sure don't want any more CT scans but how would the surgeon determine if I have an r/v fistula?  Wouldn't he see it with the anuscope???

Christine1946
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Date Joined Aug 2008
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   Posted 11/7/2010 8:40 AM (GMT -6)   
     Bumping this up to see if someone can answer this.  Thanks.

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 11/7/2010 8:52 AM (GMT -6)   
my surgeon said in his forum in answer to someone that the best way to reveal a r/v fistula is with an MRI. ask your surgoen to have it. good luck! let us know.

Christine1946
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Date Joined Aug 2008
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   Posted 11/7/2010 10:51 AM (GMT -6)   
     Oh...thank you.  Today red stuff is coming out, I have had to wear kotex pads ever since I came home from the hospital.  I am not sure whether this is blood or the drainage.  It looks like the stuff that used to come out in the JP tube.  Oy, this is sooo worrisome. 

pam222
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Date Joined Jun 2009
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   Posted 11/7/2010 10:55 AM (GMT -6)   
I'm not sure. With mine, there was absolutely no denying it. It was draining FAST and was the most painful thing ever (having all the stomach acid and stool coming out of the vagina). I had emergency surgery the next day. I had to sit up all night and the whole day just soaking rags and towels. They had to bring a laundry bin into my room and I filled it more than once with all the dirty towels. It was insane. When they did the x-ray, they never did find the fistula though. After putting the ostomy back in, it healed on its own.
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 25 mg (tapering 5mg/week), D, B12, Iron, Prenatal vitamin, Lortab, Humira, Rowasa

Christine1946
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Date Joined Aug 2008
Total Posts : 5965
   Posted 11/7/2010 11:44 AM (GMT -6)   
     Oh Pam...HI!  I haven't seen you in ages.  How are you doing? 
     I'm not that bad!  I often wonder what all that gunk was that came out of me the day I came home from the hospital though.  It smelled horrible!  Must have been sitting in me and the ride home from the hospital must have jarred it loose....which, I suppose, is a good thing.  I feel ok other than this problem.  Hope and pray I don't have to go back into the hospital..ugh shakehead !

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 11/7/2010 11:50 AM (GMT -6)   
that is so frusrtrating they can't see the fistula :( did they also do you an MRI pam? i wonder if even with the MRI they can't always find it.

there's no doubt that with an ostomy the fistula is less symptomatic, but i guess, from what ppl say here, the only way to really get rid of it is having your whole rectum and anus removed. did you have your rectum and anus removed pam?

Christine, most likely you do have a fistula, and even with an ileostomy, it sounds pretty active and symptomatic. i mean, with an ostomy it's supposed to calm down a bit, but it sounds active enough even though you have an ostomy. it's quite a nasty situation and i can totally understand your worry. and i can only imagine how horrible this is for you. i just hope they can sort it out soon. but either way, i think you should have your anus removed - only that way you'll be able to get this whole issue over with, as many on here did.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Christine1946
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Date Joined Aug 2008
Total Posts : 5965
   Posted 11/7/2010 12:20 PM (GMT -6)   
     How can they remove the anus?  Isn't the anus just an opening?  They removed the rectum and colon but didn't sew the anus closed.  Geez, I went to the top colorectal surgeon at Pa. Hospital.  You would think everything would be just hunky dory.  In September I had a hematoma, not a fistula and it feels like the same thing again.  Is this common?  There is no odor from the drainage.  I read where someone said that drainage from fistulas have a bad odor. 

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 11/7/2010 1:30 PM (GMT -6)   
hummmm..... i'm not sure, Christine.. isn't the anus a bit more than just an opening..? frankly, i don't know much about this - like you, i'm just now learning about this whole fistula situation.. you mentioned a hematoma, so i went and read some about this. from what i understood it's an internal bleeding of the tissues, so it makes sense and i guess it could be that's what it is and it's not a fistula at all, esp now that i'm finally assimilate that you in fact don't have a rectum..

for me, after 2 mons of lots of mucous and gas from my vagina and while i get my cycle - the blood goes from my vagina to my rectum (i still have my rectum), i asked a colorectal surgeon (my BIL's friend - a colorectal surgeon at UCLA), so he said it sounds like a fistula. but all of a sudden my symptoms have stopped almost completely, so he said it could be b/c i have an ileostomy, stools are not passing through the rectum, that's why my symptoms are minor.. (i'm in israel and i only consult with him through my BIL/sister by phone, so he can't really examine me).

so since you also have an ileostomy and esp since you don't even have a rectum, it makes more sense the cause for your symptoms is a hematoma and not a r/v fistula, i mean after all, if you don't have a rectum, then you can't have a recto-vaginal fistula....

gosh, there are so many deseased and conditions.... it's confusing, isn't it..? :/ but i'm sure your dr and you will figure it out eventuall!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

pam222
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Date Joined Jun 2009
Total Posts : 985
   Posted 11/7/2010 2:58 PM (GMT -6)   
Yes, with the ostomy it wouldn't be nearly as bad since most of that stuff is coming out through the ostomy. I had the fistula after takedown, so I was using my j-pouch. When I got the fistula, I had to have another ostomy put in to let the fistula heal. Then I had another takedown and have now been using my j-pouch since March and don't have an ostomy.
I'm not doing all that well. I go to the bathroom every 1-2 hours and have a lot of rectal pain. I'm not on any meds anymore since nothing worked. I'm seeing a doctor in Rochester next month to see if he can help. If not, who knows.
I'd go back to an ostomy except I was even worse then. I was emptying constantly (I couldn't even go an hour usually without emptying) and it did not fit well and my skin was getting eaten away by the acids. If I could have a trouble free ostomy, I'd do it, but no way could I live with a permanent ostomy like that
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma; 12/30/09 Takedown too soon; RV fistula;1/9/10 Second Ileostomy Surgery;
1/25/10 Stoma Revision Surgery; 3/30/10 Takedown again; 6/9/10 Scope and Biopsy--Diagnosed with Crohns Disease (maybe...)
Tried gluten free and dairy free with no noticeable improvement; Was on TPN and IV fluids 2/10-6/10. Currently:Prednisone 25 mg (tapering 5mg/week), D, B12, Iron, Prenatal vitamin, Lortab, Humira, Rowasa

Christine1946
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Date Joined Aug 2008
Total Posts : 5965
   Posted 11/7/2010 3:01 PM (GMT -6)   
     I didn't know you were in Israel.  My school friend worked on a Kibbutz (did I spell that right?)  in Israel after she graduated and married a guy (she is Jewish he Catholic) who also worked at the Kibbutz.   Anyway..lol...I sure do hope it is just the hematoma but wonder why it keeps coming back rolleyes .  I am sooooo glad I go to the surgeon on Tuesday.  Hoping and praying I don't  have to undergo more surgery.  My hair is still falling out from the anesthesia.

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 11/7/2010 3:33 PM (GMT -6)   
oh Pam.. i'm so sorry, your situation sounds so complicated, like either way you can't have peace of mind. im just the opposite. i had my whole colon removed due to colonic inertia, but still couldn't have bms on my own. so i went and had the ileostomy and i still can't have output on my own, even if i eat a liquid diet. my small intestine is very slow. i'm totally constipated and i drink 250 ml of prune juice every day - w/o it, almost nothing will come out to the bag. i'm almost jelous of your constant output.. i wish i could have some of that. but the way you describe your situation, i don't know which is worse. i hope things work out for you.

lol Christine, yeah you spelled that perfectly right :D hey if you ever come to visit your friend, let me know, maybe we can get together :) you know, ever since my first surgery i've been losing some hair too. my hair is thick so it's not too noticable, but it's like it is torn and not growing any more :( i never realized it could be b/c of the anesthesia, but now that you mention it..

talking about confusion, one of the things that can cause a hematoma is a fistula..... i had hematoma after my colectomy a yr ago and i'm almost certain it was caused b/c of my fistula. is that confusing or what..?? lol i hope we both find out what is it exactly that is going on with us down there. let us know what your dr sais.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 11/7/2010 7:29 PM (GMT -6)   
Christine~could you have an abscess as a result of surgery? I would suggest a second opinion.

The best thing might be to have the rest taken out and closed up...or a least, if it is an abscess, have it cleaned and packed to let it heal?
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Christine1946
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Date Joined Aug 2008
Total Posts : 5965
   Posted 11/7/2010 8:02 PM (GMT -6)   
     Ohio....is an abscess the same as a hematoma?  He did drain the hematoma in September...lots of blood and pus and put me on strong antibiotics for two weeks but I had an allergic reaction (bad one) to Cipro.  The third day on it, I couldn't even get out of bed..ached all over.  He switched me to Flagyl and Bactrim for the duration.  I was ok until a few weeks ago or so, when I started to feel this uncomfortable feeling.  I have always been oozing something or other...mucus, some red stuff which looks like blood.  I feel fine otherwise...no fever, no loss of appetite.  Looking forward to the visit on Tuesday to get this taken care of...sure don't want anymore surgery though.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 11/8/2010 5:27 AM (GMT -6)   
Christine~I think they are different...an abscess has bacteria/inflammation and a hematoma is more like a bruise on steroids.

I have had abscesses without a fever sad in fact I didn't have a fever with the worst one I had a few years agoshocked

An abscess needs to be surgically cleaned and is usually done under anesthesia (at least with my docs it is).
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!
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