Fistula??? Looking for ANYONE with ANY experience with this...

JustaSouthernGirl76
on 11/2/14 3:28 am - VA

My story is long and drawn out but suffice it to say I was recently told I have acid reflux and I posted about it and a very nice lady told me to look into fistulas and have an EDG done. I was so happy to hear her story because her symptoms sounded so much like what happened to me! I have had an Xray, CT (barium drink and something through an IV) I haven't had an EGD though. I started complaining of pain back in like April and they thought I might have had a blockage. After all the testing showed nothing I dropped it and just recently had an episode at 4:30 am getting choked on stomach bile/acid it was so completely awful! The doctor said that sounds like reflux and put me on Zantac. I am using military docs so it takes a few turns around the carousel to find one who is clued in!  

I was hoping to find out how common fistulas are and any symptoms that accompany them. I gurgle, it actually feels like liquid bubbles back up, kind of like a clogged toilet you have to flu**** a few times and just wait:) I am so frickin gassy it's insane!! I can wake up having NOTHING on my stomach and burp (LOUD) for several hours. I maintained 170-175 for a very long time and since being sent to Virginia I have gained 43lbs!! That's 43lbs in 3 stinking years!!! I was working in an elementary school for that time and busy, busy, busy walking many steps during the day. I took water to work with me and STILL gained weight!! I'm not going to sit here and say I ate perfectly healthy and I'd not be surprised by a 5lb gain or so but 43 lbs???!!!

I am going to call the clinic tomorrow and make an appt for a referral for the EGD and see what happens from there. I'd love to hear any experiences you might have had with this or ANYTHING you know about this. I may very well just have reflux but I just feel like there's something else going on.

Never Give Up!
Neeceelyn
on 11/9/14 5:33 am - Greenfield, IN

please check out my post. A fitsula is a hole in your pouch where food is going into your old stomach. I have the same signs you have. Exactly. I have gained almost 70 pounds.I have two of them. 

Neeceelyn

JustaSouthernGirl76
on 11/9/14 7:42 am - VA

I can't find your post, can you point in me in the right direction? What tests did you have done to find yours? I keep thinking with all the tests they've done they should have seen it if I have one. My doctor says they won't know for sure what is going on until they go down with a camera. I'm going to see a nutritionist tomorrow. I will admit that the combo of prilosec and zantac have stopped the burning and churning for the most part. I'd love to hear your story!! You can private message me if you like.

Never Give Up!
Denise R.
on 11/9/14 7:51 am

Endoscopic usually won't find them. I had 5 and they only found my two when my gastric bypass serge on ordered a upper CT and lower Pelvic CT. The two fitsculas allow food from your pouch going to enter your large stomach and that food goes through you small intestine. The small intestine is what soaks up fat and calories which is why you are gaining wright, terrible smelling stinkers and gurgling in stomach. My post is located on wks graduates wks id titled 'two holes'. Let me know when the you Cincy it. We can help each other on this! I need a friend who can relate. Oh yeah, they had me drink 2 large glasses of barroom before CT. Hugs! Heres my email: Neeceelyn@ yahoo.com

Denise <3

Denise R.
on 11/9/14 7:54 am

Ocs. Have your doctor prescribe ometprazole for the awful heartburn and burning of throat and throwing up in your sleep. The only thing they works for me. Mine is 40mg. 

Denise <3

thekatinthehat
on 12/18/14 8:54 am, edited 12/18/14 8:55 am

I just had an ulcer removed as well as a fistula repair. I recommend you contact your barbaric surgeon for help. I wasted two years of my life in pain (really 6 years, but the last two were the worst) because I kept going to my pup then my gastroentrinolist. They didn't see anything with two ct scans and an endoscopy, but on the last ct scan he just happened to mention that they saw a connection between the two stomachs but didn't think it was a big deal. That was my cue to see an expert in my unique makeup. One endoscopy and she knew the exact problem. Surgery had to correct it. 

Anyway, I has terrible symptoms for several years, but they were related to the ulcer. A fistula itself shouldn't cause pain but the acid that can now get into your pouch can cause ulcers which do cause pain. 

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