Another Update

August 31, 2014

Updates these days have been few and far between mostly because of the lack of change in my situation. There have recently been some new developments though, so I thought I should write about them. Also, thank you to everyone who has commented; I have been terrible about replying. 

So, I went a very long time since the last update without any changes in my wound at all. When I started the antibiotics, the drainage slowed down immensely, but never ever stopped completely. Anyway, I ended up losing my insurance for a few months, so I just packed the wound once a day until I could finally afford to go see the doctor again. 

Once I did get insurance again, I decided to skip going back to my surgeon and go to the wound care center, since my surgeon was just doing wound care anyway. I only went there maybe 3 times before my doctor there decided to leave. She ended up referring me to a wound care center at a different hospital and recommending that I get hyperbaric oxygen chamber treatments there. I was told by that hospital that my insurance wouldn’t cover the oxygen treatments if no one had tried a  surgical flap closure before, so he set me up to talk to a plastic surgeon. There is no way I could have afforded the treatments out of my own pocket, because they were $700 per treatment for 40 treatments. 

It’s been almost three years with a chronic wound now, so I figured that trying to surgically close the wound couldn’t hurt. I mean, I just needed to try SOMETHING new, you know? I never had any real faith that this would cure my problem, but I knew for sure that what I had been doing was never going to close my wound by itself. 

After briefly discussing things with the plastic surgeon, I got everything scheduled in a timely matter (which was the complete opposite of the plastic surgeon I had dealt with before). The plan was to just close my wound locally, sewing the muscle layer together as long as it was healthy. Plan B was to take a muscle from my thigh, but luckily Plan A worked fine. 

After surgery, I wasn’t allowed to sit for four whole weeks, so a lot of laying in bed was involved. I had a drain in for two weeks that was mostly annoying because not much drained out for the last week besides some old blood. In fact, everything seemed quite normal at my two week check-up when the drain came out. 

Shortly after my follow-up visit, I finished my course of antibiotics that I was taking (Bactrim AKA SMZ/TMP). I’m not sure if the following was due to coming off the meds or if it was just a fluke, but I started having fevers above 101 and a lot of drainage from the incision. The drainage looked mostly like bright red blood, so I decided just to go back to the hospital. 

In the hospital, they did some bloodwork, a CT scan, and some cultures. I still have free fluid in my pelvis, and no one can really tell me why. My blood culture came back negative, but I was told I had MRSA, so I was admitted and put in contact isolation. The good thing about contact isolation is you don’t have to deal with having a roommate. Anyway, they put me on IV vancomycin, which is a really harsh antibiotic that they use to treat MRSA. I had 3 different IV catheters in like 3 days, because it kept screwing up my veins. After 3 days of bleeding a lot and feeling miserable because of the medicine, I was allowed to go home. 

I recently had my 4 week follow up appointment with the surgeon. He took the stitches out finally, and a lot of the wound  actually seems to be healing alright. I still have this one little spot, however, that is really weird. It’s like a red, raised portion of skin; it’s not where my rectum used to be, but it’s higher up on my gluteal cleft where all of this drainage started pouring out of me in the very beginning of my troubles. Where the raised patch is, there is a tiny hole that looks like a drill hole, and it is draining a pus-like fluid. So now I feel like I am just back to where I started. 

The surgeon did say that it could be fat necrosis instead of pus, but I am thinking that it’s something altogether different since I have had this issue for so long now. I saw a general surgeon in the hospital that seemed to think I could possibly have a hidden piece of rectum left in my body causing these issues. What he was saying made sense at least in the fact that he didn’t think any amount of antibiotics or wound closures were going to fix me, but he did say that it would be a very difficult and involved surgery to find it IF that was even the cause. Also, my plastic surgeon sent out a biopsy of some of the wound tissue, and it came back with evidence of cutaneous Crohn’s. So my next step is to go to my GI doctor and beg to finally be put on some sort of Crohn’s medication. 

I believe if I am given meds for my Crohn’s that this problem can actually get resolved. If it happens, it will definitely be bittersweet though, because I have been asking for Crohn’s meds since the very beginning and they all denied me because of the immune-suppressing side effects combined with my supposed infection. I just can’t accept that answer anymore, because I have been on like ten different antibiotics over the course of many months and there is still no improvement. There is WITHOUT A DOUBT an underlying cause that needs to be treated!!! This is what I have been trying to get them to figure out for 3 years!!!!!! I am just praying now that someone will GET it and treat me like the complicated case that I am. 


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