Hi
First things first - I live in Japan, speak Japanese, but sometimes don't know how to translate things to look stuff up in English. I've had Crohns for 20 years, with some surgery in the past and remission for most of that time. I take Pentasa and loperamide.
So, I have a fistula, confirmed by an x-ray session with contrast media today.
It goes from inside my rectum into the flesh of my bum, and stops there. It's like a little narrow wiggly tube. Doesn't go into my bladder, or out onto the surface of the skin. Had it about 6 months, but I had a similar pain about 5 years ago that eventually went away, so either I've had it a long time or I had one in the same area and it healed and came back.
The doc wants to do more tests (colonoscopy next) and get some more opinions, both surgical and medical. We talked today about antibiotics and hope, Remicade, or a stoma and bag as some of the possibilities. I was a bit freaked out, so my Japanese ability plummeted, and I didn't ask questions such as 'doesn't a bag sound really drastic?'
He says the opening is too far into the rectum to use a seton, and that there is narrowing higher up which may reflect ulceration, and if there is ulceration that might be the cause of the fistula and affect his treatment choices.
Stomas and bags scare the cramp out of me, haha, so obviously I want to research it.
So first question - what do you call a fistula that doesn't go anywhere?
A peri-anal in waiting? Does it even count as a fistula?
Any advice would be much appreciated.
First things first - I live in Japan, speak Japanese, but sometimes don't know how to translate things to look stuff up in English. I've had Crohns for 20 years, with some surgery in the past and remission for most of that time. I take Pentasa and loperamide.
So, I have a fistula, confirmed by an x-ray session with contrast media today.
It goes from inside my rectum into the flesh of my bum, and stops there. It's like a little narrow wiggly tube. Doesn't go into my bladder, or out onto the surface of the skin. Had it about 6 months, but I had a similar pain about 5 years ago that eventually went away, so either I've had it a long time or I had one in the same area and it healed and came back.
The doc wants to do more tests (colonoscopy next) and get some more opinions, both surgical and medical. We talked today about antibiotics and hope, Remicade, or a stoma and bag as some of the possibilities. I was a bit freaked out, so my Japanese ability plummeted, and I didn't ask questions such as 'doesn't a bag sound really drastic?'
He says the opening is too far into the rectum to use a seton, and that there is narrowing higher up which may reflect ulceration, and if there is ulceration that might be the cause of the fistula and affect his treatment choices.
Stomas and bags scare the cramp out of me, haha, so obviously I want to research it.
So first question - what do you call a fistula that doesn't go anywhere?
A peri-anal in waiting? Does it even count as a fistula?
Any advice would be much appreciated.
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It is temporary and can be reversed as I would think yours would be to. Lots of info in the stoma section and even videos on youtube on how to change a bag and what not. Do your research so you have all the info to make a decision that suits you best! Good luck!
