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Crohn's Disease
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Posted 1/15/2018 7:43 AM (GMT -5)
I saw my GI last Thursday and mentioned that the RV fistula has become very active and we need to address it. Well he proceeded to tell me that I don't have an RV fistula that it's annorectal(sp). Absolute BS!!! I know darn well where the fistula comes out.

Anyway, he ordered a fistulagram. Can anyone tell me about what to expect? He sort of explained it but I'd rather hear about it from someone who has had one. My big concern is that if I have to hold or retain the contrast for any amount of time that might not go well...I have had so many dilations and inflammation that I don't have good control any more.

thanks,
Posted 1/15/2018 9:01 AM (GMT -5)
Lamb, I have no personal experience with this procedure. I did use the search feature here at HW & found several older posts about it. How I found these posts was I typed in crohns forum fistulagram. Sorry I am of no real help & good luck with the test.
Posted 1/15/2018 11:40 AM (GMT -5)
Thanks Susie. I don't always have luck with the search feature but this time what I found helped somewhat. Just want this done and get the referral to CRS. I've spent the last few days in agony with runny D flowing straight out of it.
Posted 1/15/2018 4:06 PM (GMT -5)
Hi I am61,

My experience is that an MRI or a fistula gram are both hugely important tools in treating any sort of fistula. If your specialist is wrong then the fistula gram will just show that. I spent months battling my fistula with various ops and treatments before getting an MRI which showed EXACTLY where it was forming and where it was leading. Unless they get precise imagery then they're kind of in the dark. In other words it sounds like a really positive step and hopefully the beginning of the end in terms of treatment. Good luck!
Posted 1/15/2018 4:08 PM (GMT -5)
I should add that the contrast they injected into me for the MRI was in my arm and that it made it's way around the whole body. There was no need to hold anything as it's in your blood stream. I suspect it will be the same for your fistula gram.
Posted 1/15/2018 6:28 PM (GMT -5)
Ummm, is this the same thing as a barium x-ray? Because there are MRIs with contrasts to try to look at a fistula, and then there's barium x-rays which are an entirely different thing.

This was my experience with the x-ray.

https://www.healingwell.com/community/default.aspx?f=17&m=3067176

It still makes me shudder and is probably on the top of the list of the worst experiences of my life, and I've woken up during a colonoscopy before.
Posted 1/15/2018 11:08 PM (GMT -5)
hey guys. no it is not the same scifi. i was lucky as my large fistula exited on my abdomen. what was done is a large syringe with contrast in it is attached to a rubber line. the dr sticks it in the opening under a flouroscope and injects the contrast slowly and takes pics every few seconds. this maps out the size, direction and branches of the fistula back to where it originates in the intestine, or abcess . for me it was painless and comfortable.

if your drinking contrast, there is no way of knowing if the fistula is open at that time. good luck.
Posted 1/15/2018 11:47 PM (GMT -5)
I had a fistulogram about 8 years ago.
You go in, get the gown on, lay on the slab, and then they inject dye straight into the fistula.
Then take xrays. The guy said to let him know when it started to get 'uncomfortable' because he was worried that if he put too much in that it would make the fistula bigger.
Definitely not the worst thing ever.
But nobody has mentioned doing it again in all these years, so I thought that the procedure was out of date and that people were in favor of MREs instead.
Posted 1/16/2018 6:38 AM (GMT -5)
Kind of freaking out at this point! I'm honestly not sure what the procedure will be. My GI said it's like a barium xray (UGH), I guess because there is some doubt in his mind as to where the exit of the fistula is. Oh well, whatever it takes to get on top of this thing. BTW, I had an MRE a couple of years ago that confirmed the fistula but it didn't give an exact description of the tract, thus the fistulagram.

Wish me luck at 8:00 a.m.!
Posted 1/16/2018 8:55 AM (GMT -5)
So ticked off right now. I have to reschedule because the person who scheduled the appointment didn't know there was a prep involved. And yes Scifi, it is the one similar to what you had. Not happy about that so I left a vm with my GI's nurse to find out about the prep for one and to see if I can have an MRE as an alternative. I just can't see me being able to retain the amount of contrast they told me would be used. sorry for rambling just needed to get this BS off my chest.
Posted 1/16/2018 5:36 PM (GMT -5)
OMG. Lamb. I'm so sorry this is happening to you. I've only had experience passing gas there and it's humiliating and horrific. Fistulas have taken such a told on my life.....

What are you taking for pain? Can you use a topical abx there to prevent an infection?

Please keep us informed. I'd be interested in hearing what the plan to repair it would be.
Posted 1/16/2018 9:28 PM (GMT -5)
So in my case, there wasn't even an enema, really. They had a tube in my bottom and CONTINUOUSLY pushed fluid in. It would come out into the inner tube I was laying in and they just kept pushing more in. Kind of like those colon cleanses you used to see people do as wholistic training. Ugh.

But on a positive note, you wouldn't have to worry about retaining it - they'd just push more of it in.
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