I actually have an appointment on Thursday to see both my GI and surgeon (how did I get so lucky!) but I'd like to get some insight on this before I go, if possible. Ive had this abdominal fistula (result of a resection, then 3 abscesses) since December, every medication my GI has put me on to try to heal it I'm either allergic to and/or have bad recations to. I've been on Humira, Remicade, Imuran and right now Im on 6MP.
The fistula has actually gone from about the diameter of a baseball down to the diameter of a pencil which is nice, however the depth of it hasn't changed at all, its about 2-3 inches deep. Which leads me to believe its not healing (obviously). I go through periods of heavy drainage for weeks at a time, to almost no drainage at all. My sugeron refered to this as "waxing" when it will get stuffed up with gunk and eventually break through and continue to drain. Boy do I love when its clogged!
Anyways, I was hospitalized about a month ago because of a C-diff infection and one of the doctors that treated me kept insisting that it was a Crohns flare (he's an idiot) and decided to put me on prednisone. I was ticked but I was like okay whatever. I started on 40mg, right now Im down to 25mg, next week I'll be on 20mg, then after that discontinue. Those were his orders but with my history of complications with prednisone the taper will probably be a lot longer.
For the past 2-3 weeks the drainage, color, and smell from this fistula are absolutely horrendous. I mean its always unpleasent but this is beyond disgusting. I have to change the packing every hour or so (before all this happened I only had to change it twice a day), the drainage is crazy colors of yellow, green, and brown (normally a light yellow/tan color) and the smell is putrid (usually musky, but faint).
My first thought, its infected, but I do not have a temperature, everytime Ive checked it its been between 98.1 and normal at 98.6, ONCE I took it and it was 99.1 but an hour later it was back to normal. Also on the left side of it there is a hard small lump, and its tender to the touch. I pointed my finger straight at the prednisone. I think it's the reason this is happening, but at the same time wondering if after Im tapered off, if it (the fistula) will go back to "normal".
Also, when I meet with my surgeon on Thursday I believe its time to discuss having surgery to fix the fistula. He wanted to wait 3-4 months to see if it would heal itself on medications, it has not and its been 7 months. Another questions is when he says surgery to "fix" the fistula does he mean, after the surgery I will no longer have it at all? I have heard of people having surgery to reduce the size of a fistula and such, but never to completely get rid of it. Wondering if its possible? I mean to me it seems fairly simple (but what do I know) but according to my surgeon its a very complicated procedure.
Im just really sick of it. I want to live "normal" aka without a hole in my stomach, I don't want to have to run to the bathroom to change my dressing because I know I stink because of it, and wondering if other people have smelled it too, who knows how long it takes me to notice it because I'm so used to it. Ugh! I want to go swimming, I want to have a baby, I want to be able to wear a pretty dress to my brothers wedding but I CANT because I have this dang thing on me!! I'm sorry, I know some people are so much worse off then me, but I guess when something is happening to you its hard to see beyond that. Thanks for listening.
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.