Meet & talk to fellow OstoMates Support | Friendship | Relationships

Recto Vaginal Fistulas

Sun Nov 21, 2021 7:39 am
This is a great community. Consider joining.

I was just wondering if anyone has ever had a recto vaginal fistula. I had a EXTREME one back in the summer if 2018 which basically was a driving force on me having my permanent stoma. I had had numerous rectal fistulas and fissures before. Had the Setons put in. My Surgeon said that when he went to put in the Setons..I had so many fistulas he lost count. He said it looked like a watering can with all the little holes. Anyway..I was used to getting anal fistulas. I started rectally leaking for months where I had to wear sanitary pads daily. 

But flash forward to 8/2018. I was on the verge of death with a horrific Crohn's flare up. Was bed bound for two months. Meanwhile one day I wake up..and FOOD & 💩 was coming out of my vagina!! 😫😬😭Yep. I was so disgusted. Basically my vagina and rectum had merged and got connected to each other. Like it fomed a tunnel. So feces and whatever I ingested came out both areas. 

So here I go to the ER because I was so depleted of all my nutrients. Literally I would be leaking out of both ends constantly. Had to hold beach towels between my legs to soak up all the leakage. So they tell me in the hospital that they have never seen such a severe case of Crohn's or a fistula that bad. I was in the hospital 2 weeks before I finally had my surgery. My surgeon had to get his schedule lined up with a Plastic Surgeon as they both would be operating on me at the same time. The plastic surgeon had to fix my vaginal fistula..while my rectal surgeon gave me my permanent bag. But for those two weeks before my surgery was done (my surgeon was waiting on the plastic surgeon schedule), I was in the hospital with sheets and towels through my legs leaking all over the place. I couldnt get out of the bed because I was leaking so bad. Anytime I got up..fluid just seeped out my rectum and vagina. So I was in that hospital bed not moving for a month.  The surgeon basically told me I was so sick and the fistula was so bad that the only way to repair it was with a permanent ostomy. I had been told for over ten years by my doctors that I needed a permanent bag...but I resisted. Over 86 hospitalizations later..I had no choice. That or death. 

So I had my surgery. Stopped breathing during it. Woke up 12 days later In ICU. I was told that my Surgeon put me in a medically induced coma because he didnt want me to feel that kind of recovery pain and like I said..I stopped breathing during surgery. I WORSHIP my colorectal surgeon (Dr Brian Teng, Rochester, NY). This man has seen me through countless things and has gone way beyond what a normal doctor does. Sorry..getting off topic 😛

So THEN...I lost all mobility because of being bed bound for so long. I had to go to a rehab center to learn to walk again. Was in the hospital over 5 months total that time.. Another  37 hospitalizations late...plus the 86 before. I checked my records becuase I couldnt believe a person has been in the hospital that much. Thank God for insurance. 🙏❤

Sorry for the tangent. It just poured out. No pun intended ☺😉. But I would like to know if any of you ladies out there have ever experienced that kind of fistula. It was the most disgusting horrifying thing to ever happen to me. Gross story example...Mom made me pasta salad and it had peas in it. I can remember about 15 minutes after eating..peas literally came out of my vagina!😱🤢 like I said food and poop leaked out the vagina. Can you imagine as a woman..what that felt like? 

So please let me know if anyone has ever had one of those. I am shedding light on it. It was such a random awful thing.😬

These are the top 5 issues ostomates face:

1. Dating and relationships
2. Concealing the pouch
3. Foods to eat and avoid
4. Losing or gaining weight
5. Pouch ballooning

Check out this video from MeetAnOstoMate.
Sun Nov 21, 2021 9:14 am

Hi I will like to get in contact with you. 

Sun Nov 21, 2021 12:59 pm

Sorry you went through all this hopefully you are well and truly on the mend I hope take care xx

Sun Nov 21, 2021 1:46 pm

Hello tiff.

Thank you so much for sharing your story. whilst I can only empathise and sympathise, there is no way I would know what it felt like to have experienced such horrific experiences. However, your story will help me and many others to realise that the relatively minor things that we have had to put up with are nothing compared to those of other peopole such as yourself. 

I hope all is now well with you. 

Best wishes

Bill 

Sun Nov 21, 2021 2:45 pm

Hi Tiff , as I said to Fred  , we all have had our horrible times but some of us have much deeper scars than others , physical and emotional . The emotional scars can be much worse than the physical scars and last a lifetime .  I had extreme pain for years in my Anus / rect area so I have experience with the raw   mind numbing pain  caused by  open wound problems in that most sensitive part of your body . As a man I can't imagine the horror of your Fistulas .. I was at risk for Fistula  after a really bad abcess inside my butt  so I have read extensively on the horrible condition to be better able to deal with it if I did get one .  The cases and stories  I read gave me goosebumps and chills down my spine  especially when your type of Fistula was involved .  

 You got through it and survived Tiff  and we are all here on this site to help give comfort  in your bad times and give  congratulations when you / we come out the end of such an ordeal with our sanity and body  functioning .

So happy you feel better now Tiff , not perfect but getting thete   right .

Later  , Eamon  😜☘

Sun Nov 21, 2021 4:14 pm


#Highlyfavored wrote:

Hi I will like to get in contact with you. 

I would love to chat with you. My email is ****

Sun Nov 21, 2021 4:18 pm


Caz67 wrote:

Sorry you went through all this hopefully you are well and truly on the mend I hope take care xx

Thank you for your kind words 😘

Sun Nov 21, 2021 4:20 pm


Bill wrote:

Hello tiff.

Thank you so much for sharing your story. whilst I can only empathise and sympathise, there is no way I would know what it felt like to have experienced such horrific experiences. However, your story will help me and many others to realise that the relatively minor things that we have had to put up with are nothing compared to those of other peopole such as yourself. 

I hope all is now well with you. 

Best wishes

Bill 

Thank you, Bill. I truly appreciate it😘

Sun Nov 21, 2021 4:23 pm


magoo wrote:

Hi Tiff , as I said to Fred  , we all have had our horrible times but some of us have much deeper scars than others , physical and emotional . The emotional scars can be much worse than the physical scars and last a lifetime .  I had extreme pain for years in my Anus / rect area so I have experience with the raw   mind numbing pain  caused by  open wound problems in that most sensitive part of your body . As a man I can't imagine the horror of your Fistulas .. I was at risk for Fistula  after a really bad abcess inside my butt  so I have read extensively on the horrible condition to be better able to deal with it if I did get one .  The cases and stories  I read gave me goosebumps and chills down my spine  especially when your type of Fistula was involved .  

 You got through it and survived Tiff  and we are all here on this site to help give comfort  in your bad times and give  congratulations when you / we come out the end of such an ordeal with our sanity and body  functioning .

So happy you feel better now Tiff , not perfect but getting thete   right .

Later  , Eamon  😜☘

Thank you so much. You are someone I think I need in my life to talk to. You seem to have of empathy and stories that are inspiring. Your wisdom seems plentiful 😊

Sun Nov 21, 2021 4:24 pm


c57557555 wrote:

u be thou alot in a shourt amout of time./other my have longertime frames.  it was a rough trip for u  take care have a good one heal fast./ 

Thank you very much. I truly thank you for your empathy 😊

Sun Nov 21, 2021 9:16 pm

Boy, you have truly been through a lot. Hope you are doing good now. Thanks for sharing your story.

Sun Nov 21, 2021 9:18 pm


tiff041 wrote:

Thank you so much. You are someone I think I need in my life to talk to. You seem to have of empathy and stories that are inspiring. Your wisdom seems plentiful 😊

Awww ..thank you Tiff ...as again my Mon would say .."  a warm smile and a kind word costs nothing  .."   So happy to know that I give you a grin  Tiff . 

Love and hugs  from  SF .    😜☘🤡

Sun Nov 21, 2021 9:48 pm

I appreciate the kindness more than you know ❤

Sun Nov 21, 2021 11:18 pm

I have a friend who has a fistula wound of the rectom. She's having a time trying to get it healed. She's had it for more than 2 years.

I pray that both of you get it healed soon.

E& I

Mon Nov 22, 2021 2:13 am

Read "Kitchen Table Wisdom " by Dr Reman.. she writes about hope, faith and healing she also has a colostomy and crohns. The book helped me get thru some very tough times. Happy healing!!

Mon Nov 22, 2021 11:07 pm

Thanks you all for the responses and empathy 😘

Thu Nov 25, 2021 3:47 am

hi tiff, hope u r better. i have rvf for 6years but no any other illness. 

after several surgery failure :( finally i had colostomy surgery 1 motnh ago and now waiting stoma reversal surgery (uncertain date). 

its very hard. i am praying all time. 

Thu Nov 25, 2021 4:03 am


kolostomilikiz wrote:

hi tiff, hope u r better. i have rvf for 6years but no any other illness. 

after several surgery failure :( finally i had colostomy surgery 1 motnh ago and now waiting stoma reversal surgery (uncertain date). 

its very hard. i am praying all time. 

Hi Kolo

 

Please keep us posted on how you are getting on when you finally get your reversal xx

Thu Nov 25, 2021 8:08 pm


kolostomilikiz wrote:

hi tiff, hope u r better. i have rvf for 6years but no any other illness. 

after several surgery failure :( finally i had colostomy surgery 1 motnh ago and now waiting stoma reversal surgery (uncertain date). 

its very hard. i am praying all time. 

I will be praying for you 🙏

* Please, do not post contact information, personal information or advertising.
All times are GMT - 5 Hours
Currently online: 25    
4 members & 21 visitors