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.

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4 Responses to “Update”

  1. morten said

    Hello My name is Morten:) I am a danish creative director, I am making an art project where I need some Ostomy pouches, but they have to be transparent. I googled some pictures and I could see that you had one on your picture. Do you have a website where you buy these? Thank you:)

    • Piper Lee said

      I don’t get them anymore, but I’m pretty sure I got those from my ostomy nurse. I would contact an ostomy nurse at your local hospital if possible, because I think you need a prescription to get them through a medical supplier. Either way, the nurse may have some ideas about where you could get them.

  2. Dot Langley said

    How are you doing now, love? Are you still trying to heal? I have a suggestion and it may sound weird to you but they use it at my hospital. Manuka honey (heres one link on it you can research more http://www.sciencedaily.com/releases/2012/01/120131205919.htm)
    There was a gentleman with diabetes who had a wound open for two years and within three weeks of applying the honey it closed up. Just thought I’d pass on the info if your still suffering. Please update, so we know your okay. I will pray for you, hope everything is sunshine and rainbows for you.

    • Piper Lee said

      Thank you for your suggestion. I know it’s been a while since you commented now. However, I just got my wound surgically closed. I’m not sure if it’s going to fix all of the issues I’ve been having, but it’s a start. Anyway, I don’t think the honey could’ve done much, only because I am very certain that my main problem is not infection. I’m sure it does wonders for infections though; I used to use regular honey on animal’s wounds when I worked as a vet tech. But yeah, I’m pretty sure that my healing issues are coming from my Crohn’s disease, and now I’m just hoping someone will treat me for it!

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