This has to have an end… right?

June 19, 2012

So, I know I haven’t updated this in a while, but I didn’t realize how close to the surgery it was when I made my last update. Basically, the reason why I haven’t had the urge to make any updates is because my wound hasn’t healed. At all. None. I’ve just been living with an open, draining, pus-filled butt wound for six months. Two of them, in fact. I’m just done with all of this, and I’m soooo ready to be a normal person again.

Anyway… since my last post, I went through a bunch of different kinds of packing in the wound, some tingling sensation they called “electro-stimulation”, some guy shined an infrared light on it for like 30 seconds, and oh…they tried more different kinds of packing.

When the wound care specialist/physical therapy/not a doctor guy I was seeing couldn’t help me anymore and my current surgeon decided she couldn’t help me anymore either, I was referred to a wound care center with special wound care doctors in a special wound care facility with special wound care nurses. I had my hopes up with all the fancy wound-y sounding stuff, but honestly it was the biggest disappointment. First of all, all they did was put a different kind of packing in and give me checkups like 4 weeks apart. I repeatedly asked many different people about trying a wound vac; all seemed to agree it would be way better than the packing but a wound vac has yet to touch my body. Everyone seemed to think they *maybe* wouldn’t be able to get a seal, but no one even *tried*. This device could have potentially saved my tissue and skin from all the terrible drainage, but instead I got some dressing that is supposed to “wick away” the moisture…. Doesn’t really work when the drainage soaks through a bunch of menstrual pads per day. The only good thing that may have come out of what seems like a waste of time was a referral to a reconstructive surgeon.

So I had an appointment with the reconstructive surgeon, and it only lasted like 5 minutes or whatever, but instead of just pushing me to another doctor and not wanting me to come back, he seemed like he really was  going to fix me. He did refer me to a colorectal surgeon he works closely with because they are probably going to do my surgery together. I guess he wanted someone with Crohn’s experience to take a look at my CT scan and wound to make sure there weren’t any freaky things going on. My appointment with that surgeon was last week and seemed to go pretty well too.

I haven’t gotten a date for my surgery yet, but I got a very brief explanation so far of what’s supposed to happen. They are probably going to take the gracilis muscle out of my inner thigh, scrape up the innards of my butt, and insert the muscle. Apparently, this will make it heal. They seemed confident. I have no choice but to trust. Now is just another waiting game until it happens.

I also have to get an MRI in, uh… two days. I’ve never done that before. I’m pretty sure it’s going to suck, if not only because it hurts me to lay in one spot for a long time, and I can’t have anything at all by mouth 6 hours before the procedure.

The last thing I wanted to mention are these new symptoms I’ve been having within the past week. I have been having really sore joints. I’ve never felt anything like this before. My wrists, ankles, knees, elbows, hips, fingers, toes, spine… all killing me whenever my meds wear off. I am pretty sure I also have a more aggressive fever. And I’m getting some skin involvement. Pretty sure I have an “erythema nodosum” bump on my shin. Had just one a few years back that resolved with remicade, but I’m no longer on Crohn’s meds anymore. I’m just worried that I’m having all these Crohn’s symptoms, yet no intestinal involvement. Should I be worried that my immune system is screwed up in yet another way? How am I supposed to decide which doctor to go to now? I’m definitely not in my comfort zone anymore.

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