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

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MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/11/2009 8:57 PM (GMT -7)   
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.


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.
 
www.myspace.com/mastermelissa

Post Edited (MAG102886) : 8/11/2009 10:02:50 PM (GMT-6)


FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 8/12/2009 4:47 AM (GMT -7)   
Wow! I don't have an abdominal fistula so I don't know what that is like. But that sounds intolerable. I hope you doctors have an answer for you!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


crohnielass
Veteran Member


Date Joined Mar 2009
Total Posts : 1118
   Posted 8/12/2009 7:47 AM (GMT -7)   
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 

Diagnosed with crohn's at 13 now 42
resection, right hemi 1993 In remmision from 93 till last sept with no meds or docs
2 resections small bowel  and fistula jan 09 and given temp stoma.  reversal sheduled for Nov09 Meds:Pentasa 500mg 3x day,  B12 shots, every 3 months, iron syrup,loperimide,folic acid, Back on citalopram 40mg (for Anxiety.)


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 8/12/2009 6:23 PM (GMT -7)   
I don't have an abd. fistula but I do have a rectal one...and have had numerous others ones. The pred is definitely not helping the healing process.

When my crohns flares, my drainage becomes stinky...one way that I know that I'm having a bad day, and it will drain more.

I have the go ahead from my surgeon to swim with mine....and I do all the time.

Don't know if this was helpful at all...hope so. So sorry you are going through all this.

CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/12/2009 6:30 PM (GMT -7)   
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.

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/12/2009 7:19 PM (GMT -7)   
No I havent tried the hyperbearic chamber, sounds interesting though. I did at one point have a wound VAC when it was still just an abscess, I assume the hyperbearic chamber is the same thing in theory just much larger in scale and isnt hooked up to you obviously.  I'll ask my surgeon about it tomorrow though!  Although if he says he can fix it with surgery Im running with that all the way!
 
Thanks everyone for the replies, it means a lot!
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.
 

spurscouk
New Member


Date Joined Jan 2009
Total Posts : 5
   Posted 8/12/2009 7:41 PM (GMT -7)   
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 spurscouk@yahoo.com.sg if you're willing to try, I'll give you more info.

MissCris
Regular Member


Date Joined Jun 2006
Total Posts : 321
   Posted 8/13/2009 5:22 AM (GMT -7)   
I'm sorry that I don't have any helpful information but I just wanted to give you a million e-hugs because while I can't understand exactly what you are going through, I kind of get it and I'm just so sorry sad I really hope that they figure something out for you soon!

love love

Cris
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 8/13/2009 1:07 PM (GMT -7)   

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.  :)


Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum. 
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, 3xday, Hyomax, Welchol 625mg, Flagyl 250mg, 3xday, Calcium, Acidophilus & Potassium
Previous Medications I've been on:  Asocal, Pentasa, Cipro, Prednisone & Entocort


MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/14/2009 8:20 AM (GMT -7)   

Update:

I saw both my GI and surgeon yesterday morning. All went well. Surgery is Sept 4th to "take down" the fistula aka get rid of it! YAY! Im so excitied.  He said he saw no reason why he shouldnt do it, and he has a good feeling everything will turn out well.  I was hoping for a sooner date but I'll take it!  He said I would probably be in the hospital for about 7 days after, and should need around 2-3 week recovery at home depending on how things go.  He suspects he can do it lapro but he wont know until he gets in there.  I told him I honestly dont care as long as its gone!!!


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.
 

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/14/2009 10:26 AM (GMT -7)   
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!

frogeleita
Regular Member


Date Joined Jul 2009
Total Posts : 342
   Posted 8/14/2009 10:34 AM (GMT -7)   
Is their a way..you can put a nice big piece of gauze over it so you can wear a pretty dress maybe a cute dress like an empire waist...no one would ever know anything was there..because it was baggy...and swimming..if you can get a good suit that criss crosses in the front..ll bean or lands end sells them..and it would disguise any packing you had in that area...also..though my fistula is in a different place..i had two kids by csection..so their is hope..that you can have kids as well..

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 8/14/2009 11:39 AM (GMT -7)   
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!
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.
 
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