ok, so backstory. a little over 2 years ago i had an abscess drained and after that no problems. unknowingly though the abscess was actually a fistula, but i had zero pain/ discomfort/ or anything like that. i literally lived with the fistula for all this time without really knowing it. it would leak very small amounts of brown liquid (whenever i saw this i assumed i didn't clean well enough when using the restroom) and i never really examined the area cause i thought it was just a scar from surgery when they drained it. now i'm dealing with a new fistula which once looked at the doctor was like "ya, you've had a fistula this entire time!" i had to have two setons placed, one in the old fistula i've had for over two years, and one in the new fistula which recently emerged. the weird thing about all of this is i have a very well functioning j pouch that has never caused me problems, besides slight gas pressure. i only use the restroom 3-4 times a day, sometimes 2. i am terrified of this being an indication that i will have new bowel problems. if anyone has had a similar experience or has any insight about what i'm dealing with it would be welcomed. i'm having a ton of stress and anxiety due to this! these setons really really suck
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Do you think you could have Crohns???
i’m getting a test soon to see. it’s called a prometheus test i think
I can certainly understand your feelings of fear and anxiety about this. I know I went through that for some time re a fistula as well. I don't pretend to know but it does seem like getting a new fistula might point to Crohn's? However, there are a number of things that can be tried. When they thought it might be Crohn's I was told a biologic might be a good option. Also, there is research being done (American trial) on stem cell fistula closure by a doctor at the Cleveland Clinic. Other alternatives I was presented with was a procedure done by Dr. Shen (now in New York apparently) as well as advancement flaps and a surgery involving the gracilis muscle.
I mention these just to let you know that there may be solutions. However, having said all that, I have opted to just live with mine (pouch/vagina fistula). It really helps to keep the stool on the thicker side (I use psyllium) and also to make sure I don't let the pouch get too full.
I really do feel for you as you go through this...
@baredex posted:i’m getting a test soon to see. it’s called a prometheus test i think
I took that test, it said I have UC. My dad took it too and it said Crohns for him.
A lot of people do not believe in that blood test, but I do. Hope it turns out good for you!
I have had a very good functioning j-pouch since 1995. Back in 2016, I had a small abscess that wouldn’t go away on my butt area close to my anus. Went to my surgeon and he said it was a simple fistula and operated on it. Right after that, another one popped up just inside the anus- which alarmed me. I looked into it online and read this can happen once the first one is operated on. I have had the anal fistula since Jan 2017 and have not gone back to deal with it at all, because the surgeon said if it ever goes to the anus, he can’t operate due to the delicate anal muscles, but can possibly do a drain. I soak it with hot water on a sitz bath when it gets swollen and painful. I find when I’m stressed it flares up with pain/swelling/a bit of bleeding. I have experimented with different foods but no difference. Seems to be cycles of being ok, leaking more fluid, pain, swelling , repeat. I am thinking of getting a seton drain but hearing that it can fall out and have to keep getting it replaced. yuk....so I just deal with it.
Baredex, how are things going now. Do you have any better idea of what's going on for you? Any plans? Thanks for an update.
Trishp, I also go through the cycles of settled and active but haven't been able to see any particular pattern.
@JHendrix posted:Baredex, how are things going now. Do you have any better idea of what's going on for you? Any plans? Thanks for an update.
Trishp, I also go through the cycles of settled and active but haven't been able to see any particular pattern.
i actually just had another abscess drained yesterday. the doctor thought it might be a new fistula, but it turns out it wasn’t. both my colon rectal surgeon and my gi doctor want to put me on some form of biologics even tho my tests came inconclusive as to whether i have crohns or not.
My gastro doc also recommended biologics just to see if it would help heal the fistula even though no one (him, surgeon or me) really thought I had Crohn's. We all thought it was worth a try. Maybe it is for you as well. I truly hope you have success with it.