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Fistulagram results FINALLY

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Crohn's Disease
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Posted 1/26/2018 12:35 PM (GMT 0)
Warning guys you might not want to read this.

I finally got the results of the fistulagram although I haven't heard from the GI yet. But the results indicate a complex sinus tract/fistula arising from the anterior aspect of the anorectal junction. It extends into the region of the vagina and an ano rectal-vaginal fistula is suspected. However given the complex path of the fistula the ultimate destination is difficult to determine.

I just want to say um if it's not ending vaginally then why in the world did the contrast exit there????????
I was a complete mess when it was over and basically had to take a sponge bath in the restroom. And if I hadn't kept pushing the radiologist I don't know that he would have looked lower, they could barely insert the catheter or it blocked the opening. But overall the techs and radiologist were awesome and made a very uncomfortable procedure bearable.

Hopefully this will be enough for my GI to refer me to the CRS for his opinion.
Posted 1/26/2018 4:14 PM (GMT 0)
Hmm, not quite as definitive as you would like for it to be for sure. I would think you have enough info showing that your gi will make a referral, if not, I would need a very good explanation.

Keep us posted.
Posted 1/27/2018 4:17 AM (GMT 0)
Woah.. I have no clue what any of that means, but I have had a fissure in between my butthole and vagina for about 2 months I think..

I am so sorry this is happening to you..

Im just a youngin so I don't really understand all of these medical terms. My parents are in the medical field and are trying to educate me as much on this disease along with my doc.
Posted 1/27/2018 10:51 AM (GMT 0)
sorry to hear that. i remember many years ago i had some serious digestive issues and at the time I had HMO so my doctor would not refer me to a GI specialist until after several useless visits. after that fiasco, I made sure to get PPO even though its slightly more expensive.

RV fistulas sound pretty terrible. Hopefully you will get referred to a good CRS who knows how to treat these.
Posted 1/27/2018 5:27 PM (GMT 0)
lamb difficult to comprehend this technically - Sending my support though.
Good to have a good radiologist and tech people, makes a big difference.
Hope you get a good CRS quickly, all the best.
Posted 1/28/2018 10:53 PM (GMT 0)
I'm so sorry to hear this.
Surgeons willing to work on fistulas are rare and then surgeons who are willing to work on RVFs are nearly impossible to find.
My brother says that few surgeons will even attempt to fix an RVF because of the muscle involved.
Is Remicade not an option?
Posted 1/29/2018 10:26 AM (GMT 0)
lamb. anterior means rear. ano-rectal junction is maybe 2-4 inches inside, depending on how your put together. sinus tract i think means back and forth like a heart beat graph, you know up and down.. and ther not sure where it exits. possibly due to the amount you leaked, i quickly covered the hole and coated the space. making it near impossible to locate due to all the contrast would have looked like a big white blob n the xray. which btw, did they use a flouroscope to get real time movement? if the did not it was a waste of time. the time between one xray and the next the 'cavity ' could have been completely obscured. obviously i am not a radiologist, but ive seen and had done most things you would ever encounter . not the vagina thing of course but many other caverns in my body, so would ASSume its quite the same. ask to see the pics for your self. and have it explained to you while looking at them with the dr. if they brush you off and dont want to do it, find another dr asap.
Posted 1/29/2018 12:29 PM (GMT 0)
Thanks for all your replies, you're support means so much. Because in the back of my mind the worst case scenario is my CRS says it's time for an ostomy due to all the rectal issues I've had and still have and this fistula. But before that my next step might be Cleveland Clinic for another opinion. No idea how long it takes to get in there but I've already made up my mind on that. Told DH last night and he was worried about cost but they are covered under his insurance so that won't be a huge issue.

I know, I'm jumping ahead but that's where my mind has been all weekend.
Posted 1/30/2018 5:18 AM (GMT 0)
good luck lamb.you're doing the right thing. you should try and exhaust your options and seek second opinions if possible.
Posted 2/2/2018 7:19 AM (GMT 0)
I’m not sure how much inflammation you have. But if you are not in a flare a Fistula plug may be an option to try before agreeing to flap or some other surgery. I’ve done it 3 times. It’s outpatient procedure & pain free and lasts about 5 years if your fortunate to be a small segment of women that it works for. This last time, I suffered over 2 years because my previous CR Surgeon is no longer in my plan and the new doc needed to have the previous Dr consult with him. Finally! I healed in 2 days. No lifting for about 2 weeks. It’s been about a month & im feeling better.
On another note, I quit taking Remicade & began LDN Cream about 5 months ago. No side effects and I noticed an improvement within a month. Full disclosure: my Integrative Dr put me on a gluten-free anti- inflammatory diet and a handful of supplements. I’m almost normal.
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