Update

October 10, 2013

I figured I should update since it’s been quite a while since my last post and a lot has happened. I’ll try to keep it short though.

For one thing, Crohn’s is the only disease I have as far as anyone knows. There were some ideas that I could have Behçet’s due to the ulcers I had on my skin and eyes, but I guess they were due to severe Crohn’s plus the stress of infection.

In September 2012, I had really hit a breaking point where pain was concerned. It was getting very difficult to walk, stand, sit, or basically do anything but lie down on my side. I basically begged my GI to help me. She sent me to the Johns Hopkins emergency room. The GI team decided to debride my wounds and basically make the two small wounds into one very large wound. After that, they attempted to place a wound vac, but it couldn’t get a good seal, and it just wasn’t working out.

Since the debridement allowed my wound to drain freely, it actually took away some of the pain and the weird symptoms I had been having. I was able to walk a little more freely, but the wound was huge and the inside was still really painful. They started me with pulse lavage treatments to clean out the wound. I feel like they didn’t do much, because there was literally so much drainage that it was a constant flow. They also treated the wound with silver nitrate to get rid of hypergranulation tissue; it hurt like hell, but they gave me some lidocaine beforehand which made it easier.

Most of the time spent between then and now was just doing that and healing very, very slowly. However, the purulent drainage just kept flowing. Eventually, they decided to put me on penicillin, and the drainage just went down to almost nothing. It seemed ridiculous to have waited so long to try antibiotics again; I was told I didn’t need them after I had IV antibiotics in the hospital, because they assumed my wound would be clean after debridement. There were no obvious tracts for drainage, so I guess I can’t blame them. Plus, I had been on antibiotics before with no improvement. This time though, there was a huge improvement.

After starting the penicillin, I just went to the clinic every week for silver nitrate treatments, and the wound started healing better than ever, but still very slowly. I was on penicillin for at least four months. Now, I am off medications and not doing the treatments any longer (or at least that often). However, I STILL have a rectal wound and it STILL has small amounts of drainage. I pack it with gauze every day, and I still have pain. To think, this all started on December 11, 2011, and I STILL have a wound. It’s pretty depressing, and  all I can do is hope that it goes away soon.

The worst thing is that I will no longer be eligible for my health insurance in a few days. I don’t really know what to do besides wait it out and hope I don’t have major problems until I can get something cheaper in a few months.

Also, one thing I didn’t mention was my encounter with a plastic surgeon. After my wound was debrided, they thought they’d give me muscle flap surgery to fast forward the healing process. The plastic surgeon I dealt with was really the worst doctor I ever dealt with. I mean, I’m sure he performed great surgery, but otherwise he was really the worst. Basically, I was jerked around for months without even being scheduled for surgery. I kept calling and his assistant would just tell me she couldn’t schedule my surgery until the paperwork was done; well, the paperwork literally took weeks to get off of his desk (even though my GI surgeon had wanted the muscle flap done while I was still hospitalized). I even had appointments and emails with him where he kept saying he was placing me at number one priority, but after he’d tell me that he would go back to ignoring me for more weeks. I eventually had to just break off contact with him, and my GI surgeon told me I probably didn’t need the flap anymore anyway because it had been so long. I’m glad it didn’t happen, because I’m almost 100% certain it would have failed since the drainage came back full force, but it was still the worst experience I had with a doctor and office. I was really made to feel like I didn’t matter at all, when all of my other doctors were always prompt with callbacks and never left me hanging.

Anyway, that’s basically where I am now. Just waiting and waiting forever for this wound to heal so I can move on with my life.

Winging It

December 31, 2011

A few days ago, I had another checkup. My deep wound has a good amount of pus boiling inside of it. Awesome. The visit involved a pretty torturous wipe out with gauze. My surgeon recommended I go to physical therapy for “pulse lavage.” When I went, I found out that it’s basically a tube with a little rubber cone on the end where water comes out and shoots into the wound and vacuum suction pulls it back out with the debris to wash to wound. I basically lasted 3-5 whole seconds before I couldn’t take it anymore. I was nervous to begin with, but I was hoping it would be a moderately soothing experience, but I didn’t even really feel the water, just pain. So the guy who was doing it is also a wound care specialist, and he gave me a different packing to put in the wound. I’ve used it before on my stoma; it’s called aquacel and it’s basically a silver dressing that promotes healing and soaks up debris. He also gave me an antiseptic wound spray to spray all up in there. The packing hurts a lot less than stuffing all that gauze in there, but it is also very expensive and not covered by insurance. I’m going back tomorrow to see if we need to make any changes.

Pain, pain go away…

December 23, 2011

I talked to my surgeon on the phone yesterday and told her how bad it hurt with the packing in. It’s like I can’t sit, lay down, walk, do anything! The packing also fell out as soon as I got up to pee two days in a row; just plopped right out into the toilet. Her advice was to try a little less packing and see if it helps, and she mailed me another prescription for dilaudid since I’m going to run out before my next appointment.

So last night, instead of struggling to pack the wound where my butthole used to be with a 4×4 gauze, we cut that gauze in half and packed it. Before, half was hanging out, and I think that’s why it fell out twice. Now, most of it goes in, but it stays in better. As for the pain, we’ll see if it’s any different. Last night and this morning were pretty terrible, but it has subsided a little this evening. I still think there is really about the same amount of packing inside the wound, so it still hurts and it is still excruciating to go through the actual packing process. I really dread that every single night, so I hope that it heals quickly, but I still get a lot of bloody drainage as well.

I didn’t really know what to expect going into this surgery and knowing that the wound would have to stay open. I guess I didn’t expect it to be this painful. It definitely makes me wish everything was taken out at once and I was all sewn up, but then I probably would be in a different place in life, and I wouldn’t want that.