post surgery fistulas

My surgery was a month and a half ago and my JP drain site turned into a fistula (it is also possible that I have a fistula going to my uterus). The doctors are kind of just...waiting and watching. They said that hopefully they are post surgery fistulas vs Crohn's fistulas because APPARENTLY post surgery fistulas might actually heal. I already had a fistula before the surgery and have failed Remicade and Cimzia to try to close it. I'm nervous that these fistulas aren't going to close. I know I should be more worried about the uterine one but honestly having my guts spill out of my stomach is a bigger concern to me.

Has anyone had post surgery fistulas that have actually healed on their own? Any ideas on how to deal with the pain? Meds don't seem to help and I'm having a lot more abdominal pain now because it has been draining so much lately. I've been trying to keep it really clean so it doesn't get infected. I change the bandage every time I feel it drain but it is still SO sore.

Also the GI dr suggested I go on an elemental diet but I don't have a tube or anything so I'm just trying to do a low residue diet. Any suggestions on how diet might affect the closure?

Thanks guys!

I had a post surgery fistula in my abdomen.  I had it for 2 years attempting to heal with with meds but it wouldn't.  It took 2 surgeries to get it to close completely, and even then my surgeon left me with an open wound incase it started draining again.  So it took about 6 months AFTER surgery for the wound to actually completely heal up. 

I didn't really have pain from it, but what did hurt was how irrirated it would get from the drainage, UGH I wouldn't wish that on my worst enemy.  I used baby wipes to keep it clean, and I changed the banages about 5 times a day to avoid drainage bothering my skin.  My GI said it was OK for me to take baths, so soaking in the tub helped a lot.  I have heard many people say that their doctors told them not to soak it so I would ask before doing it.  Sometimes I used diaper rash cream around the opening.  There were nights that I just wrapped a towel around my stomach and slept because my skin was soo sore.

Fistulas seem to drain worse when you are having D, so I would avoid fatty foods and such, eat plain rice, breads, pasta...

Thanks guys. Sorry it took me so long, things have been bananas lately. I'll admit that I haven't even been good about the diet. It's just so hard for me to stay mindful of it if it isn't REALLY restrictive. I have been thinking that I might just do pastas/breads right now because the drainage has been hurting so bad.

I'm really sorry to hear that you had so many problems dragonfly :( I'm really hoping I won't have as many but I tend to be worse case scenario girl. I have an appointment with my GI tomorrow and my surgeon next Wed so I will definitely be discussing my options in the next week or so. I am really scared of surgery after the last one but I'll do what I need to do. I know one of the GIs was talking about putting me on 6MP and Imuran for maintenance meds but I'm not on anything at the moment.

What is the skin prep you were talking about? I wonder if I could get them to give me something like that because if tape never touches my skin again, it will be too soon! I'm so sore, I want to cry every time I have to change my bandage...which is all the time because I can't stand the thought of it draining and just sitting there.

I would probably go to bed with just a towel except my boyfriend just moved in with me :( I'd like to be able to air it out and take a break from the tape/adhesive but I don't want him to see it, it's so gross!!! Baby wipes are a good idea, I've been using alcohol wipes to clean around it and every once in awhile, the drain itself but obviously that hurts a lot. I used a saline flush to clean it this morning but now it looks like its closing up again. I'm worried that I might need the strength of the alcohol to keep it open.

OHMYGOSH fistulas make me so insane.

Thanks guys! I'd be so crazy without you!