Ugh--Another Fistula Question (Long vent-ish, sorry)

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". 

Thoughts?

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.

Hi Mag, i too have the same fistula as you and can relate to how you are feeling i had mine operated on in jan before the op i had poo coming out and had to wear a stoma bag on it  because it was draining so much(sorry for the TMI)after the op i still have drainage but it is less than a teaspoon and is a pale greeny colour (it is that colour because of the meds i take) just needs a small dressing  now  my surgeon was reluctant to operate at first as he said" its quite a tricky op" i don't know to much about what he done apart from he had to leave the stump.I have some little pediatric stoma bags that i wear when i go swimming  as its waterproof also if it gets smelly i have drops that i put into the bag that illiminates the smell  i may use these little bags to if im going out for a while and i don't need to worry about changing dressings don't know if you may find this a bit intrucive  using these but i was just trying to think of ways which would free you up from the fistula for a while. hope i've helped a little. Bev x 

Prednisone is defeintly slowing down the healing process. Have any of you ever used the hyperbearic chamber for your fistulas? I have for rectal fistulas that wouldnt heal, and didnt for about 2 years or more.

Hi Mag, I've had CD for bout 8 years now, 2 surgeries, lots of meds... preds, asacol, imuran ...etc. My experience is that the meds are only temp solutions, if they work at all. I currently on remicade 6 weeks. Its either that or my diet now thats bringing some relief for me coz I sort of like on this blood type diet. Whats your blood group? You can email me at [email protected] if you're willing to try, I'll give you more info.

Fortunately, I haven't had a fistula yet (knock on wood).  I get recto/vaginal fisures all the time though.  I also did pretty well on the Prednisone considering I was expecting the absolute worse.  I have had the C-Diff though.  In fact, 6 weeks since my last course of treatment for it, it's back in all it's glory.  Talk about a smell, C-Diff mucous is disgusting, not that your oozing goo isn't awful too. 

I can't empathize not having had a fistula before but I can certainly sympathize and wish you the best of luck in getting it cleared up and all better.  :)

Is it draining feces? Because that will contribute to the smell..but whenever its color is close to green or dark yellow..or pus like...that is a definite sign of an infection ( i have come to learn....that a fistula is like a constant infection)...i would call the doctor..or talk to a nurse in the same office..explain that to them..and maybe they can give you some antibiotics...its so difficult..because for you..where its located..its hard to soak...can you take baths with a little bit of epsom salts in them? You know to allow that area to soak? My heart goes out to you my fistula friend..call your doctor..don't hesitate...they are their to help you..and its their job to make sure you are feeling good and all your questions are answered...take care!

Thanks for the response! I saw my drs yesterday and my surgeon is going to fix it with surgery on the 4th of sept.  I do cover it with gauze as well as pack it, but right now its draining a ton so it soaks through very quickly. It does sometimes drain feces, more so right now then before. Usually it drains what I call bile, what it actually is I dont know, but its usually a light yellow/tan liquid.  My surgeon said its probably because of the prednisone. Surgeon said on a scale of 1-10 (10 being the worst) my fistula is a 1.  However, I told him to me its a 10, and to anyone with a hole in them draining nasty stuff, Im sure its a 10 to them as well lol.  My fistula is located 1-2 inches above my bellybutton, so he said under NO circumstances can I get pregnant until its either healed itself or until its fixed surgically.  My brothers wedding is oct 17th, so hopefully Im all healed up and ready to roll by then!