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Does anyone know who the best Dr in the World is for treating fistulas?

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Ulcerative Colitis
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Posted 2/21/2017 11:53 AM (GMT 0)
I was doing very well ---had an EUA on Jan 30th, showed no openings in rectum. MRI from Jan 5th showed granulation of recto-vag fistula and the other 2 had shrunk significantly. Sadly, last Thurs the recto-vag opened up causing much distress to my lady bits and of course mental anguish. The only change was that I had stopped taking an abx.

I can't go on like this.

I'm hoping someone knows who the most innovative treatments and of course has the highest success rate for treating these darn things.

As far as bowel---doing well with solid, normal bm's. Usually 3 a day. Some urgency especially in the morning.

Anyone know the top DR/CRS that I could consult with?

Thanks
Posted 2/21/2017 1:43 PM (GMT 0)
I wish I did! Sorry to hear about your set back. Sounds like you were finally getting better. Hang in there and hope someone has an answer for you.
Posted 2/21/2017 5:49 PM (GMT 0)
Just bumping this for you. I wish I could help. (((Hugs)))
Posted 2/22/2017 3:45 AM (GMT 0)
Thank you.

I'm in agony and don't know what to do. The abscess is so big that it's pushing into my vaginal wall. That's how it opened again. I'm burning beyond belief. I've stopped drinking because it hurts so much to pee. I can't have clothes touch me. I'm back to where I was a few months ago. I can't believe this is happening to me again.

It;s not like HB/humira weren't working. The rectal opening closed. Unfortunately the hole in my skin beside rectum also closed. It's like pinching the top and bottom ends of a straw closed. What's left in the middle is abscess with no where to go. The HB doctor was hopeful as the tissue is healing, but I know I'll be having another surgery. Just don't know if I'll walk into ER or its planned. I'd rather set a date.

I'm scared the abscess is stretching the integrity of the vag wall and will make hole bigger. I don't want to pass stool from there.

I'll send an email to my surgeon but I believe he's on vacation.

I'm taking percocets for the pain but it's not helping. I can't believe this is happening to me.....again. I don't know why I have such bad luck. It's like Im being punished for something.
Posted 2/22/2017 5:20 AM (GMT 0)
U B Tough,

There was a doctor in California that went overseas yearly and performed surgical corrections on RVF. His success rate was high.

I can not find his name again. Maybe someone here will remember him. He fixed RVF from the vagina side so he would not impact continence.

I will start searching tomorrow night and post any info. (I can't believe I misplaced his info!)
Clo
Posted 2/23/2017 2:26 AM (GMT 0)
UB --

Holy s&%*! This totally sucks. I hope you can get through to your surgeon. If the HB and humira were working on the other fistulas, maybe they will eventually work on this one.

Someone told me that the most experienced surgeons for fistulas have worked in third world countries where obstetric fistulas are more prevalent.

Were you ever able to get any attention from Mt. Sinai urogynecology group? I can try to make some calls around in the States and see if I can get somebody who might know somebody..... Teaching hospitals are sometimes the place to go.
Posted 2/23/2017 12:46 PM (GMT 0)

clo2014 said...
U B Tough,

There was a doctor in California that went overseas yearly and performed surgical corrections on RVF. His success rate was high.

I can not find his name again. Maybe someone here will remember him. He fixed RVF from the vagina side so he would not impact continence.
Clo

Clo, that would be awesome. Thank you.

I did find this Italian Doctor using cryotherapy, which is interesting.

http://www.proctologiasenzadolore.it/

Suzy---I had a breakdown on Friday night. I actually thought of reaching out to you but I didn't think you'd want to hear me blubbering. I;m in shock. I couldn't go to HB yesterday due to pain. You can literally feel this thing pushing up against vag wall. It's like a fist punching through. I took 4 percocets yesterday. I got a script for CBD oil and hopefully it' will arrive today.

The good news is that everything was working well. My bowel was/is really good. All fistulas were healing. RVF had closed.
Best case scenario is that the abscess bursts on it's own, which will be insanely painful and will take a while given that the bottom tract out to hole near rectum has completely closed. Worst case in that I end up in ER. The surgeon is on vacation until Monday.

I finally have an appointment on Wed with the uro-gyne. I don't think he will do a nerve block etc this appointment. At least he can see exactly what's going on. I'll have my period though. Unsure if he would be able to see rvf though.

My GI hasn't returned Tuesdays email.

Is is worth me getting an appointment at Mayo?
Posted 2/23/2017 2:34 PM (GMT 0)
I have no idea how mayo or Cleveland clinic is with fistulas, but you might want to call both.
Rochester NY has an IBD center as well, you could give them a ring and see if anyone there could help out. I don't know anyone who goes there, but my PCP suggested that if things start going downhill for me that I go there since it is about an hour from where I live. It isn't too far from Toronto, either. Hugs.
Posted 2/25/2017 3:19 AM (GMT 0)
I know this is quite far from you, but after having some severe rectal pain issues of my own last year, and SEVEN different drs, no one could figure out what was wrong with me, (two of them were colon rectal specialists, the others were gastro dr's and a gynecology oncologist), this one finally did figure it out and she is amazing! ive had to have two surgeries from her already and i couldnt rave any higher about her.
her name is Dr. Debra Tarantino and she is in New Jersey.heres a link to her :http://www.castleconnolly.com/doctors/profiles/debra-r-tarantino-colon-rectal-surgery/
i know its super far from you , but just throwing it out there!
good luck! i feel for you sad((
Posted 2/28/2017 10:28 PM (GMT 0)
thank you poopersWifesmile Love the name.

It's not far, only 8 hours or so away. Trust me, I'd go anywhere. It's just the $$$ but if I can convince the Canadian gov't that I;ve exhausted all options here, I may have a chance at getting my treatment paid for. Currently, looking at someone in Italy believe it or not. (Although not too promising)
Posted 3/1/2017 9:57 AM (GMT 0)
Oh my UB Tough, I am so sorry you're going through this. I wish I knew who to refer you to, but my best guess would be Mayo clinic in MN or the Cleveland clinic, based on their rankings in colorectal surgery (the top 2 clinics in the US).

I am currently flaring (blood, very little solid, frequency 5-10x per day). I have recently developed an anal fistula--I have not been seen by a doctor yet to confirm but it's really undeniable based on what happens in the toilet.

I'm wanting to try HBOT to help heal my flare and fistula, and will be checking into the options in my area. I'll have to pay for it as insurance won't cover it. I hope I can find something affordable. I'm very curious about the results you have had with HBOT? How often did you go? How long did it take to see results? What were your results (remission, fistula healing, etc.)?
Posted 3/3/2017 2:39 PM (GMT 0)
What helped me was a long course (2) months of steroids and week of antibiotics at first. I went to Mayo Clinic and I was NOT impressed with them at all, I won't be back.
Posted 3/3/2017 3:00 PM (GMT 0)
UBT,

I don't want to be american centric but have you looked at the American Society of Colon and Rectal Surgeons? /www.fascrs.org/patients

I would give them a call, explain your situation and ask them who they'd recommend.
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