Ohh, so much has happened. Let's see. I went to see my original colorectal surgeon at UNC Chapel Hill to get my fistula looked at to get fixed. One thing ab teaching hospitals... You never see the head physician first. You always see a "resident" first, who was dried off at birth yesterday and thinks he knows wtf he's talking ab today. He gave me his spiel while I looked him in the eye with my batted-eyelash "gtfo of my face" look, until he decides to go, "Well, we'll go get the big guy now!" Yes, you do that, you pompous lackey of an intern. Jeez.
Dr. Koruda comes in and takes up his standard pose of leaning against the closest wall or counter, crosses his arms, and looks at me over his glasses. I've known this man since I was 17. Even with not having seen him since 2010, he looked me up and down and said, "This doesn't look like you. You're way underweight." Points to the only medical professional in the room who knows wtf he's doing! He examines me, confirms that I do indeed have a fistula (the intern tried to say it was an abscess... Abscesses don't produce and expel gas. Air doesn't just float around in your abdomen. It has to be produced by the gut. Byproduct of food breakdown.), and agreed to fix it. I was admitted the following week to have it "fixed." When I came out of the anesthesia, all that had been done was to ram a Jackson-Pratt drain up into the fistulous tract, to suck out the drainage. Great. So, we want a tract to close... So we shove a tube up there to hold it open? This makes massive amounts of sense. Not to mention, while I was hospitalized at the good ol' UNC Memorial hospital, I gained not only a MRSA infection in the drain, but also a C.diff infection in my small bowel. Go me! Oh, and did they put me on any antibiotics for said infections? Nope. Not a one.
So, I go home with this incredibly painfully placed drain and attempt to live my life. Yeah right. It was constantly pulling the stitches perianally, and the bulb where the drainage was supposed to go was too big to be concealed by clothing. I figured out how to place it in my waistband so I could at least go out to dinner with my boyfriend, but the drainage plugs would dig into my skin, causing painful indentations.
Eventually, after the second drain replacement, it just wasn't cutting it. I was heavily expelling around the drainage tube, so it was a pretty pointless endeavor to continue. I bought a plane ticket to FL on my own, and planned to fly back to St. Petersburg to have surgery. When I called Dr. Koruda's nurse to tell her, she goes, "oh, we can do that here!" I had a lot to think ab. I decided to cancel my flight and have surgery in NC. Most was peer pressure... People didn't want me leaving the state's proximity, etc. But I also wanted to believe that Dr. Koruda would help me protect my BCIR pouch, and just be willing to fix the fistula and leave my internal pouch alone.
I had surgery on September 21st. I was alone in pre-op, wringing my hands and trying to keep myself calm. Have you ever heard someone say that they heard a still, small voice speak to them? Inaudible in a room, just a voice that speaks to your soul? It told me that all the decisions I'd made up until now had led me here... And that I wouldn't be keeping my BCIR. My eyes just filled with tears, and one tumbled down my cheek. I wouldn't say that a peace came over me, more like a calm resignation.
They took care of me during and immediately post-op. In fact, I scooted myself from the surgical stretcher to the one in my room with no help. But it was true: I came out with an ileostomy bag and a jagged vertical incision, going up and around my belly button. Previously, all of my surgeries had used my original horizontal bikini scar... This one was/is jagged, deep, and ugly. My first time hooked to a wound vac... An instrument of hell is the only way to describe it. If you can imagine it by its name, you can pretty much envision it. If you can't, Google it. It's painful, awkward, and a complete pain in the padded ass. I barely escaped having to bring the hell-tool home with me... It was actually separating the sides of the incision, so they decided to send me home on wet-to-dry dressings. Awesome! I know exactly how to do those!
Small problem. The incision that I have to dress is literally less than an inch from my new stoma. So I have the ostomy wafer that I have to trim the side of rather creatively so it doesn't cover the wound. Then I have the tegaderm wound dressing that overlaps the wafer in some areas. Awesome. And it's not ostomy leakage that's causing loss of adhesive integrity... Its the cerous(sp?) fluid from the wound soaking into the ostomy and causing it to lift off my skin and pour out. Like, really? Can we not work together here? Just ridiculous. It got better once I stopped using the cheap Hollister supplies the hospital sent me home with and I got back to using my regular supplies from Convatec. I guess my skin is used to that stuff. I still have days where I wake up covered in it... Have to strip all the stuff off, get in the shower, strip the bed, clean the stains, try to resecure the dressings, and then climb back into bed because I'm exhausted. I legit passed out in the Aldi's exit one night when we went grocery shopping. I almost passed out in the shower yesterday when I was trying to clean up. My vision got black and fuzzy and I had to sit down or I was gonna crack my head on the porcelain tub. It doesn't get much lower than that... 25lbs underweight, can't control your ostomy output, almost passing out and plopped down in the shower, with the water just pouring all over you, unable to get up. The only thing that finally drove me out of the shower was the hot water running out. Then I trimmed and slapped on my ostomy wafer, put some gauze on my wound, wrapped up in a towel and just crawled back into bed, where I still am, right now.
Crohn's is no freaking joke. It's a Damn struggle every single day to even find something worth getting out of bed and being in pain for. In my head, I know what I have to do, but my body just says, "yeah, no way." And then I hit my head on the frame holding the glass lobby up in a grocery store and wake up in some lady's arms, who is holding me in an upright sitting position, telling me I'm gonna be ok. My head is too heavy to lift, but I manage to give another woman my boyfriend Brandon's name, and she goes back into the store to get him. I get checked out by EMS and am cleared to go home, where I make a beeline from the car to my bed.
Crohn's destroys your life and it's so hard to fight back sometimes. Sorry if this entry offended anyone, with language or content. The way I see it, this is my corner of the blogosphere, and I'm going to show my life and my struggles in black and white. There's a lot of gray in my disease, but my life and personality is very straightforward. Don't like it, don't read it.
Just my Public Service Announcement for the day (:
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