Surgeon created my exterior fistula hole!

[Graceiferd]

So I'm very new to the crohn's situation. (This is my first post) My surgeon is convinced I have it crohn's and my new crohn's dr is telling me that I do not. Second seton placement surgery /colonoscopy 6/23/14 and came out having been told in a very excited manor that it was crohn's and they found it!! Yippie....

So to cut the story short I had a peri-anal abscess 2 years ago in July and was in the hospital for 3 days and nobody could tell me what it was or why I had it. They drained it in the ER and put me on intense antibiotics (invanz) and just kept me there until my fever went down sending me home not even seeing a surgeon which they promised I would get to see one every day I had been there. (But that's a whole different story)

Anyway I found a colorectal surgeon and ever since then every 3-4 months I would have to go back to the hospital and get it drained in different areas around my perianal region because I would have more pressure and pain and abscesses. I even had a surgery 11/22/13 and the surgeon said she had fixed the problem and still they returned.

Last august my surgeon drained my last puss collection (in her office) and created a decent sized hole that essentially would not close to the left of my anus and told me that if it didn't close then I had a fistula and to come back 6 weeks later. Needless to say it never closed and I have a complex transsphincteric fistula.

It has been draining ever since and I use so many gauze pads to keep my area clean. I was afraid to have surgery because of the risks due to it being so deep. I've tried a lot of alternative medications and whatnot. I'm very into not being invasive and healing things without drastic measures like surgeries.

I had my first seton placed 3/20/14 and my second 6/23/14.

Anyway so here is my question is your surgeon supposed to create the hole that your fistula drains out? Had she done something wrong because I just keep getting sicker and sicker and it's baffling how my two doctors are contradicting each other. Has anyone else had there fistula pretty much created by their surgeon? I've searched a lot and haven't really seen this question being asked.

 

[afidz]

I typed out a long response, and then hit a bookmark on my screen and lost what I wrote, so here I go again, hopefully I don't forget anything I said
I have never had a fistula, but I have had several (more than I can count) infections in my abdomen where the surgeon had to cut me open and leave me open for the infection to clear out. One of the biggest reasons they do it that way is to debride (http://en.wikipedia.org/wiki/Debridement) the infected tissue to give the healthy tissue around it a chance to heal. I don't think the surgeon did anything wrong, but, I can't say for sure in your specific situation. You can always get a second opinion and talk to that doctor about your concerns with what the first surgeon did.
I have had a wound vac multiple times in the past as well. Basically its a sponge that connects to a vacuum that is continuously sucking on the wound. It encourages non healing wounds to heal y encouraging cell growth while sucking out any pools of puss or infection that are in the wound. The wound then heals from the inside out. It takes a long time, and the vac is cumbersome and frustrating, but it does a good job with non healing wounds. I am not sure how it would be used with a fistula, but it might be worth bringing up with your surgeon.

 

[Graceiferd]

Thank you very much. I tried to get a few second opinions and the first dr said he wouldn't touch it because another surgeon had all ready done things. The second one said oh you know my friend...referring to the surgeon I see and essentially said the same things and was a useless appointment. Which is crazy because I went to two very good hospitals.
Also I will defiantly look into the wound vac it sounds too good to be true!

 

[Graceiferd]

Has anyone had their surgeon create there external fistula hole?

 

[theOcean]

I had a fistulotomy where they lay the fistula tract open and, if it hasn't already burst open, they create an exterior hole and put a seton in to keep it open and draining. Mine drained until I went on Humira, and then it stopped all drainage within a month. It hasn't drained since December now and all abscesses are gone, and I got my seton removed because of that so it could try to close. It's a slow process but it's healing.

 

[Graceiferd]

Interesting. Thank you! I can't have a fistulotomy due to it being a complicated one and the risk of incontinence and whatnot.
Now the two drs are saying two different things. The surgeon wants to put me on remicade the crohn's dr does not because he is convinced I don't have crohn's due to the biopsys being negative. There is a ton of inflammation though and I'm always sick and my stomach is always in shambles. I went gluten free 5 years ago, then soy, dairy, corn, tapioca and the list goes on an on until I just only ate certain foods that were "safe" and still am sick all the time. So I don't even know I just thought I had a ton of food sensitivities. That's off topic though. I just hope one of them can figure out what to do. Sorry for rambling.

 

[theOcean]

If you have a fistula, even if you didn't have Crohn's, you would still go on a biologic to treat it. A friend of mine who doesn't have Crohn's went on Remicade and it cleared up her multiple fistulas instantly and made them stop draining. I would insist on going on a biologic even if your doctor argues you don't have Crohn's. I was originally diagnosed as having Ulcerative Pancolitis, but the moment they found the fistula they changed my diagnosis to Crohn's.

And it's all right! Getting treatment plans figured out is difficult, especially when you have a doctor who seems to be disagreeing with things...

 

[Graceiferd]

Thank you. You've helped a lot.
I'm still confused though do regular fistulas creat there own exterior hole or do they always get made from a surgeon?

 

[If*]

Hello, some come through on their own and some get a hole created. Usually the ones that come through on their own have a abscess that burst.
Have you looked into hyperbaric oxygen therapy for hard to heal wounds?? It might help??

Hang in there

 

[Lady Organic]

It is so difficult to be in a situation where doctors have different opinions and when we dont understand the whole story of whats is happenening to our body. You are courageous. hang on, the solution will come :ghug:. I'd try to get a third GI opinion if I were you.

 

[Graceiferd]

I live near Boston and go to mass general. One would hope that they were good but it's kinda strange the way they operate. (No pun intended)

Thank you I will deff look into the oxygen therapy. I really appreciate all of your responses

 

[Sailorluna]

Hi Graceiferd, I have two fistulas there and in both cases they opened up the abscess cavity, cleaned it out and placed the seton. The exterior flesh slowly healed up to the seton which defined the exit of the new fistula channel. Due to the seton I drain in a different and easier to manage location. So in a sense yes, my fistula holes have been created by the surgeon.

 

[Graceiferd]

It makes sence now. Thank you all for explaining!!