Seeking advice on rectovaginal fistula - anyone experienced this?

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tiff041

I was just wondering if anyone has ever had a rectovaginal fistula. I had an extreme one back in the summer of 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. I was bedbound for two months. Meanwhile, one day I wake up, and food is 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 formed a tunnel. So feces and whatever I ingested came out of 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. I 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 for 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's schedule), I was in the hospital with sheets and towels through my legs leaking all over the place. I couldn't get out of bed because I was leaking so bad. Anytime I got up, fluid just seeped out of 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. I 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 didn't 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 bedbound for so long. I had to go to a rehab center to learn to walk again. I was in the hospital for over 5 months total that time. Another 37 hospitalizations later, plus the 86 before. I checked my records because I couldn't 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 of 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.

#Highlyfavored

Hi, I would like to get in contact with you.

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Caz67

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

Bill

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 

Past Member

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/rectal 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 abscess 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 there right.

Later, Eamon

 
Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
tiff041
Reply to #Highlyfavored

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

tiff041
Reply to Caz67

Thank you for your kind words.

tiff041
Reply to Bill

Thank you, Bill. I truly appreciate it.

tiff041
Reply to Anonymous

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

tiff041

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

lovely

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

Past Member
Reply to tiff041

Awww... thank you Tiff... as again my mom 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.

tiff041

I appreciate the kindness more than you know.

Ebony&Ivory

I have a friend who has a fistula wound of the rectum. She's having a hard 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

Maried

Read "Kitchen Table Wisdom" by Dr. Reman. She writes about hope, faith, and healing. She also has a colostomy and Crohn's. The book helped me get through some very tough times. Happy healing!!

tiff041

Thank you all for the responses and empathy

kolostomilikiz

Hi Tiff, hope you're better. I have RVF for 6 years but no any other illness.

After several surgery failures :( finally, I had colostomy surgery 1 month ago and now waiting stoma reversal surgery (uncertain date).

It's very hard. I am praying all the time.

Caz67
Reply to kolostomilikiz

Hi Kolo

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

tiff041
Reply to kolostomilikiz

I will be praying for you.

Past Member

Thank you for sharing your journey. What a wicked road you have walked. In spite of that, your tone is one of acceptance and life, and that is inspiring.

I did have a rectal/vaginal fistula, awarded to me by the birth of my first very large baby who presented looking at the ceiling, not the floor... or was it the other way around? Anyhow, he came out after 48 hours of labor, facing the wrong way. A few weeks after his birth, I found that I had the unique ability to pass gas through my vagina. The fistula was located and left alone, as nothing solid could squeeze through.

Fast forward to the birth of my second even larger baby, who enlarged that fistula to the extent that solids could pass through. A surgery was done where the surgeon cut the wall between the two orifices and sewed from inside out. Oh wow, months of pain. But the issue was solved aside from I could still pass some gas through my vagina. Tiny fistula remained.

Fast forward to my colostomy surgery 1/22. The surgeon asked me if I knew I had a small fistula. Ummm, yeah. Well, it was removed with a whole lotta other guts, necessitating a colostomy.

Not once along this road of fistulas and multiple autoimmune disorders have I faltered. I knew the only one that can pick me up is myself. And if I am down, there I shall stay.

Your story is one of hope and strength. Carry on, live well.

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