Skip to main content

It turns out after almost a year and a half of living with "a bump" or "cyst" it was actually ascess/fistula! So I now have a "mushroom" drain in, but does anyone have any suggestions for keeping it clean? This thing is a big pain! My dr. also said if the fistula doesnt heal he will put in a seton drain ...does anyone know why he wouldn't do that in the first place? I'm guessing because it was bigger than he first thought but that's just a guess. Also, has anyone had a fistula heal with just a drain., no major surgery? He's thinking I have Crohns and not colitis like first diagnosed. This is just all alot to take inFrowner
Original Post

Replies sorted oldest to newest

I have a draining seton, just looks like a little rubber twist tie that loops through all of it, for a fistula.

Sitz baths are extremely helpful, in cleaning AND soothing the site. I carry Tucks pads with me for when I'm out. I'm a nurse, so at work, I grab washcloths and wet them and heat them up for cleaning after a bowel movement (I've done that at home, too, in a pinch... wet the washcloth and do 30 seconds or less in the microwave to warm them). But at home, I use a sitz bath most of the time when I go. You can put Epsom salts or table salts in them to draw out the "stuff," too.

My doctor won't place cutting setons... he said they're barbaric and way too painful. Though, with this draining seton, I don't know that we have a direction yet but to leave this in for a period of time. It's not horrific, just altering, you know?

My doctor won't go to the Crohn's dx yet... besides the fistula, I have no other symptoms of Crohn's at all... and you CAN get fistulas with UC... and also just because of the bowel surgeries. I suppose some doctors might have changed my dx, but he's not ready to do that, since mine is just a simple fistula not involving the pouch. I *am* going to see one of his medical GI colleagues eventually, so maybe they will want to change that dx, but the surgeon doesn't want to.

I was having a lot of pressure and pouchitis type symptoms before my whole bump/abscess/fistula started up. All of that might have contributed to getting the fistula, but who knows. I had been feeling "off" for a bit of time prior to it, too, sort of running low grade fevers off and on (but was that the fistula forming, or the pouchitis? Chicken/egg situation, I think.) This seton has changed that for me, thankfully. I don't feel "sick" anymore with that overall tired/yucky feeling. If I have to live with a seton for a long time, then so be it, I guess. It gets easier as the days go by.
Last edited by rachelraven

Add Reply

Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×