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Ash83
Regular Member


Date Joined Nov 2007
Total Posts : 128
   Posted 1/9/2008 10:12 PM (GMT -6)   
What are they?

Post Edited (Ash83) : 2/8/2008 9:28:51 PM (GMT-7)


donut
Regular Member


Date Joined Jan 2008
Total Posts : 54
   Posted 1/9/2008 10:46 PM (GMT -6)   
After my surgery for a bowel resection, I developed an abscess where there was a small leak. The abscess was right above the top of the vagina. It needed to drain and 'broke through" at the place of least resistance. The fistula is like a little tube that, for me, ran between the colon and the vagina. It works the same between the rectum and the vagina. I started passing gas and liquid stool our of my vagina while still in the hospital(Thank God!). i also passed some of the tiny staples used in the surgery, so i was freaking out. I was pretty sure I was in a bad way, because I had never heard of anything like this. It was truly the worst part of the whole surgery.My doctor did a temporary iliostomy so that the fistula would eventually close and heal on its own. It has been 5 weeks and the draining has stopped, so I believe it is healing as predicted. Apparently, fistulas like this are more common that I thought, especially if one has diverticulitis(like I did) , UC or Crohns. I have read that many people need to have them surgically repaired, but I am hoping for the natural way...we'll see.....

praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 1/9/2008 11:37 PM (GMT -6)   
I have one too. Donut pretty much explained it perfectly. U usually don't need a dic to diagnose an rv fistula as ul get the symptoms first. Passing gas thru ur vagina, then stool mostly when u have diarrhea, depending on how bad it is. Ill b getting my bag this month in hopes of healing. I have what a doc called watering pot fistulas which mean I have several fistulas going to several places in my nether regions. U can look on the crohns disease boards for more info there are several posts regarding rv fistulas
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


donut
Regular Member


Date Joined Jan 2008
Total Posts : 54
   Posted 1/10/2008 9:26 AM (GMT -6)   
My fistula was diagnosed with a barium enema x-ray so they could see where my colon was leaking through to the vagina. Today I see the dr. after my 5 weeks since the ileostomy. She will do another x-ray next week, the same as the other and determine when I will be ready to reverse the ostomy. There was no pain with the fistula, but the odor was terrible and I didn't feel like I could go anywhere. If you are worried about it, I would talk to your doctor. Sounds like your body has been through a lot, but it may just be nothing..some effects after the delivery perhaps. I had so much swelling and things were so irritated "down there" from all the draining. One night, in the hospital, I sat in my sitz bath and had a good cry . That helped! Although the nurse came in and told me to stop crying. HELLO..I am going to the bathroom through my vagina here!I have been more optimistic since then..realizing that things WILL get better..it just takes time.

Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3134
   Posted 1/10/2008 12:04 PM (GMT -6)   
hi there! I haven't posted here in while- my surgery was postponed, so.. BUT- I'm pretty sure I have an RV fistula- the usual symptoms, totally freaking me out. I had a CAT scan done w/contrast, which showed nothing- visited the gyn who couldn't find anything either. However, don't tell me it's not there when I know what I'm seeing coming out of my vagina! All this started almost 3 months ago now- I am just getting over my period, & had to reschedlue my gyn. follow-up appt. as it was for tomorrow. If I still am getting symptoms then, I'm either going to ask for more testing- the dyed tampon, barium enema, etc. or just blow it off- after researching these on the net & the Crohn's forum, I've found many people just live with them. I don't have any odor, but a constant leaking of brownish/mucousy stuff, mainly when I am having diarrhea or lots of bm's. And the gas passing thru there. So even though the docs are saying "no", I'm saying "Uh-Oh". It's tough to find a doctor to deal with them also- you have your GI, your Gyn, then a rectal/colon surgeon. I've gotten so used to it by now, it isn't casuing pain, so I'm ready to blow it off. And I've had intercourse with it- we use condoms, so the "nasty stuff" isn't an issue.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 10mgs/day
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 1/10/2008 12:12 PM (GMT -6)   
Eva lou is pretty much right. There's nothing to say that u "can't" have sexual activity with one. Especially when its just air, but most women inckuding myself choose to refrain due to pain that some get during the fistula or simply b/c of sheer embarrassment or insecurity. I suffer from both. But medically u can still do the do
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2764
   Posted 1/10/2008 10:47 PM (GMT -6)   
I had RV fistulas for many years, which ended up being one of the reasons why I have an ileostomy today. I'll explain...
 
The fistulas ended up creating an abscess on my butt cheek, which was the most pain I've ever felt. It had to be surgically opened up, and the wound had to be left open to heal for several months.
 
I had to pack the wound with gauze that had a liquid antibiotic in it, so it wouldn't get infected. I also had to take a shower and clean the wound after every time I went to the bathroom. Well, with Crohn's, that can be up to 20 times a day. I couldn't sit, because it hurt so much, and I had to take pain medicine just to get through the day.
 
Well, the Crohn's flared up during this time, and my GI doctor, as well as my colorectal surgeon insisited that I get a temporary ileostomy to bypass the colon to let it rest and to let the wound heal. The wound did heal, but my colon didn't, so we ended up removing it and the rectum, since it was diseased, too. It wasn't until that surgery that I finally was done with the RV fistulas and the Crohn's flare ups.
 
Even though RV fistulas were miserable, in a roundabout way, they led me to where I am now, which is completely healthy and in a much better place than I was before.


Cecilia
 
Dx'd Crohn's in '99 at 28. Proctocolectomy & ileostomy in '06.
Pain-free, med-free, and very thankful to be healthy again :)


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 1/16/2008 11:02 PM (GMT -6)   
Ce ce u are totally strong! Ash, i've read that you can get pregnant with a fistula. Even though, since u have an ileostomy and there is no bowel passing by it, i dont see y you wouldn't be a good candidate for the plug. That's why i'm getting the ilieostomy in the first place, my rv fistula became unmanagable, but i still go from the back, so when i go, stool and infection is going into my fistulas, and obviously the stool comes out of my girly parts. I wanted the plug, but the doc said that is not an option until my bowels get a rest and i can stop passing stool thru the fistulas, because of the stool i still get absesses and infection, and if i get the plug the infection will just cause the plug to come alose. So getting the ileostomy is supposed to be giving me a rest so we can look into plugging my fistula if it doesnt close up on its own with the humira.
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3134
   Posted 1/17/2008 12:10 PM (GMT -6)   

My gyn said the same thing to me, SJ30!!!! I told her what I suspected & what my symptoms were, she replies "Well, those areas are soooo close, geographically, even though you'd swear you're not wiping wrong, you'd be surprised!" Then she took a look, sent me to the lab for blood work, & that was it. I still haven't gone for my follow-up appointment- I keep putting it off because I know that A) she still won't believe it's a fistula. B) Since there isn't much to be done re. these, i'm not sure I want to press the issue for more invasive testing and/or surgery. and C) After having the discharge & other symptoms for 2-3 months now, I've pretty much gotten used to it! It's better than a bad UC flare-up, that's for sure. the way I see things is this- if/when my UC finally goes into real remission, the fistula ought to close up. And if I wind up getting a perm ileostomy, the fistula will close up then too! So either way, it's a win/win situation..... eyes   Just joking.... sort of!


diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade infusions
Imuran- 100mgs/day
Prednisone- 10mgs/day
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 1/17/2008 1:06 PM (GMT -6)   
SJ, thanks for that info, as i keep forgetting about the mucus that will still pass even tho i have the ileo. So u said that it still comes thru the vagina...if u dont mind my asking, does it have an odor? is it better than before?
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/17/2008 4:44 PM (GMT -6)   

Stacie,

Do you still have your rectum?  I am assuming that you do (I may be wrong), but would removing the rectum, if you have it, resolve the fistula issues?   I'm not sure, but I believe I had these 23 years ago...I had such horrible Crohn's then, which is one reason they removed the rectum when they did the ileo surgery.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 737
   Posted 1/18/2008 6:11 PM (GMT -6)   
Ash! U r cleared to do the do! Lol u may want to lubricate b/c they can cause sex to b uncomfortable or even painful ( painful in my case). But if that's not an issue for u, its safe2say ur good 2 go. Especially since u do have a bag, so only air is coming thru, in that case, hygeine wouldn't even b an issue 4 u.

Enjoy! Lol
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


majestikcanyon
New Member


Date Joined Mar 2009
Total Posts : 1
   Posted 3/12/2009 12:50 PM (GMT -6)   
Hi I am new on here, just discovered this site. I have an RVF due to long and difficult labor with complications. It was the 4th degree laceration w/ the epis and vacuum ext (baby was stuck ) luckily we both are fine her birth healthy but guess this thing stitches did not heal, showed up months later. I , anyway said will have another baby and get it fixed after that. Since then moved to another city and had another OB for my 2nd baby, at due date we both decided normal delivery would be fine, just then they did a US and the babys cord was wrap twice around her neck that made me nervous which made stomach ache and got me leaking down there :( they all rushed me to the OR for the C section.
After that, in the recovery room I told my OB I was not going to have any more kids and that I was thinking to have the surgery to repair my fistula. She then told me how bad was the leakage really, on a scale of 1-10 I told her I can have great days and then can bad ones but really I felt the good days were many more than the bad. Then she said 'don't do the surgery, if you are doing fairly well on your own it is better to live with it'.
I got so frightened after that, like she meant it could get worse? or surgery comes with other complications? like maybe death?

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3071
   Posted 3/12/2009 7:24 PM (GMT -6)   
majestikcanyon--welcome to the site! Glad to hear you have two healthy babies:)

Fistulas can be tricky and most of us have ours from disease (Crohn's mostly) so we can have multiple and they usually drain a lot...Personally, I lived with mine for 10+ years, and was unable to have them surgically repaired because of the disease.

Have you asked her what the pros/cons are to your fistula? Is it it's location? Since it is RVF, you could get a second opinion from a ColoRectal Surgeon...they specialize in that type of surgery and may give you a better feeling about your options. I wouldn't let a general surgeon do that type of surgery!!!

Also, it is best to start a new thread for your questions...that way you'll get more responses to your specific question:)
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