Share Facebook



10-29-2013, 08:13 PM   #1
Jaded
 
Join Date: Oct 2013
Location: New Castle, Indiana

My Support Groups:
Vaginal Fistula

A couple years ago I had a couple abscess between my vaginal and anal area checked out, cut open, cleaned out and was put on antibiotics. This was by a temp surgeon who I was seeing while between GI doctors. They healed and I had no further problems out of them until recently when a flare put me with full blown watery BM's and I noticed I was pushing air then feces was passing through. I have since changed GI's because I have had no luck with the one I had been with since being diagnosed in 2006.no remission, nothing but steroids and pain killers which are temporary fixes.Anyone experienced a vaginal fustula before? What can I expect as far as being examined, determining if surgery is the only fix and healing time? Very nervous. I haven't even spoken to my husband about me finding this or assuming that's what it is. Embarrassed&afraid!
10-30-2013, 08:42 AM   #2
Grumbletum
Senior Member
 
Grumbletum's Avatar
 
Join Date: Dec 2010
Location: Western Isles, United Kingdom

My Support Groups:
Hi Jaded
A big warm welcome to the forum. I'm so sorry to hear that you're having a recurrence of symptoms. I had a bowel to bladder fistula which meant I passed air and later stool from my 'front passage'. I'm sure someone who's had a vaginal fistula will be along soon.
I had a CT scan and an MRI to determing the presence of the fistula but I think with a vaginal one they can sometimes see them by direct examination?
I know the symptoms are really yukky and distressing :-( What's your new GI like? Will you be able to get in to see him/her soon?
__________________
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
10-30-2013, 11:01 AM   #3
Jaded
 
Join Date: Oct 2013
Location: New Castle, Indiana

My Support Groups:
Thanks for the reassurance Grumbletum! I have yet to see my GI until November 15th which is the soonest I could get in. I've read a lot of reviews and seem to be in luck with the new one. I am so overly tired of trying to be "somewhat normal" and have a good day every now and again. 7 years of suffering is just too much. I am just in shock that the surgeon who did the surgery didn't bother to explain further maintenance of a distils and what exactly is was. I had to learn all on my own which makes it difficult to digest, lol! I am also surprised my OBGYN didn't point it out to me instead of saying all looked well after a vaginal delivery and postpartum checkup.
11-15-2013, 11:11 PM   #4
Sunione
 
Sunione's Avatar
 
Join Date: Dec 2012
Location: Torrington, Connecticut

My Support Groups:
A couple years ago I had a couple abscess between my vaginal and anal area checked out, cut open, cleaned out and was put on antibiotics. This was by a temp surgeon who I was seeing while between GI doctors. They healed and I had no further problems out of them until recently when a flare put me with full blown watery BM's and I noticed I was pushing air then feces was passing through. I have since changed GI's because I have had no luck with the one I had been with since being diagnosed in 2006.no remission, nothing but steroids and pain killers which are temporary fixes.Anyone experienced a vaginal fustula before? What can I expect as far as being examined, determining if surgery is the only fix and healing time? Very nervous. I haven't even spoken to my husband about me finding this or assuming that's what it is. Embarrassed&afraid!
I have a recto-vaginal fistula and have lived with it for almost 3 years. It certainly changed my intimate relationship with my husband. I am lucky enough to have a wonderful understanding mate but this is not an easy thing to acknowledge to begin with. Now I realize that I can tell him anything. He cannot however begin to imagine what this does to your womanhood or how you feel about yourself.

I remember that when I began to suspect what the problem was. I was mortified. Now I joke about it because what else can you do? Surgical repair for this type of fistula has a low success rate. Now there is reason to believe I also have one going to my bladder, waiting for the MRI results.

When the recto-vaginal fistula first occurred,I was not aware that there was such a thing. I was having so much D at that time it took me awhile to even suspect such a thing. To make things worse, my GI was scoffing at me because he was convinced I had UC, not Crohn's. It soon became very obvious what was going on, to be blunt, I had acquired an extra rectum with no sphincter. Did not show in a CT Scan, gynecologist could not find it, even an MRI and two colonoscopies could not pinpoint it's location, preventing any attempt at surgery. Have since changed GIs and am on REMICADE but after 11 months of infusions, no sign of healing.

Sorry to go on in such detail. This is one demoralizing disease.

Suni
__________________
*Diagnosed with Crohn's Colitis
*Currently on REMICADE; 5mg every 8 wks
*Gluten free for past four years
*Severe reaction to Asacol (nearly bled to death)
*A recto-vaginal fistula named
*Plus another fistula that exits somewhere near my urethra

Some other fun conditions:
*Hypothyroidism
*Degenerative disk disease
*Fibromyalgia
*osteoarthritis
*Carpal tunnel
*Bulging disks in neck
*Depression/anxiety
*Incurable sarcasm
11-17-2013, 03:21 AM   #5
Jaded
 
Join Date: Oct 2013
Location: New Castle, Indiana

My Support Groups:
Thanks so much for the reply. I am also blessed to have such an understanding husband.I was petrified to talk to him about and have no clue why as this man risked his freedom and life to come home to me from AIT. He went awail when he found out I turned for the worse in 2001, rode under a semi on a spare tire for countless hours just to come be with me and be sure I got good medical treatment. I am currently waiting on my results to see if surgery is even a possibility. I hope your test results come back in your favor. I may get down on myself but I refuse to let this disease ruin my life. Next step with the new GI is humiria. I noticed you also had an issue with asacol as did I. Its been 3 1/2 weeks since my last dose that I was only taking for 6 days and I just finally became able to eat and rid of the D. I thought it was going to killed me as well.
11-17-2013, 10:41 PM   #6
Neko76
 
Neko76's Avatar
 
Join Date: Mar 2011
Location: Ottawa, Ontario

My Support Groups:
Hi I have had a number of recto vaginal fistulas. I don't have time to write atm, but I will get back to you as soon as I have some time. Also if you have any questions or anything that you may not want to say as publicly please feel free to PM me. TTYS ~Kat~
11-19-2013, 05:30 PM   #7
Sunione
 
Sunione's Avatar
 
Join Date: Dec 2012
Location: Torrington, Connecticut

My Support Groups:
Thanks so much for the reply. I am also blessed to have such an understanding husband.I was petrified to talk to him about and have no clue why as this man risked his freedom and life to come home to me from AIT. He went awail when he found out I turned for the worse in 2001, rode under a semi on a spare tire for countless hours just to come be with me and be sure I got good medical treatment. I am currently waiting on my results to see if surgery is even a possibility. I hope your test results come back in your favor. I may get down on myself but I refuse to let this disease ruin my life. Next step with the new GI is humiria. I noticed you also had an issue with asacol as did I. Its been 3 1/2 weeks since my last dose that I was only taking for 6 days and I just finally became able to eat and rid of the D. I thought it was going to killed me as well.
Hi Jaded
Wow, your guy is wonderful. Rode under a semi to get to you???? How romantic is that? We are both very blessed. It helps to count my blessings everyday and the hubby is at the top of my list!
About Asacol, 3 in 100 people who take it for colitis or Crohn's will have a worsening of symptoms. (This effect has a name but off hand I cannot remember it). There are plenty of pages on the web about this side effect and yet my GI at that time insisted that the buckets of blood I was passing were NOT, COULD not be from taking it. I was hospitalized at the time, had lost 30 lbs in 30 days on this drug and they kept increasing my dose and I kept getting worse!!!! Finally I refused the med and within 24 hours began getting better physically but was getting a load of s*** from my GI, insisting that I MUST keeping taking the Asacol!!!!! I forced my husband to "bust me out" . I took out my IVs and we proceeded to the elevator where the nurses tried to physically stop me from leaving. I had some setbacks at home but I did begin soon to improve. I worry about this idiot GI's other patients.
How are things going for you now? Have you had any tests or seen your dr about the fistula?
Just got a call from my GI's PA about a MRI I had last week. Apparently my recto-vaginal fistula has decided to keep going to my urethra. Joy. Have an appointment with a surgeon on Dec 13th (a Friday ).
I will be thinking of you.
Suni
12-09-2013, 09:48 AM   #8
Beatingcrohns
 
Join Date: Dec 2013
Hello all! Just wondering what your symptoms were when you first developed the fistula? I suspect I have a recto vaginal fistula as I've been passing a lot of gas through the vagina but not feaces. It seems to be getting worse. I haven't had a flare for two years and bm's have been solid. The GP can't see anything, but I know something is wrong. I have a pelvic ultra sound today to see if my bowel is stuck anywhere. I'm worried this is going to get worse.

Diagnosed crohns 2010
Imuran 150mg pd
Steroid free since 2011
12-09-2013, 12:58 PM   #9
Lisa
Adminstrator
 
Lisa's Avatar
 
Join Date: Apr 2010
Location: New York

My Support Groups:
I had multiple fistulas, which thankfully were healed once I started Remicade - has this been discussed as an option before going down the surgical route?
__________________

30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
Reply

Thread Tools


All times are GMT -5. The time now is 08:09 AM.
Copyright 2006-2017 Crohnsforum.com