I do this every day.

I do this every day.

Examine The Area for bumps, openness, bleeding, dryness, red/purple/black discoloration.
I’m 16. I cannot sit with my legs over the side of the bed, as the rush of blood causes tremendous pain. I miss the last three months of my junior year. It’s all because of a few small purple wounds on my lower legs. My first run of Prednisone, which is a miracle drug that masks the pain and symptoms but is not a cure. I do experience many of the side effects of large doses of Prednisone, but I suppose they’re more tolerable than the pain.

I miss the baseball season, Junior Prom, and my grades sink even though I tried to keep up.

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I do this every day.

Determine if topical treatment is necessary.
I’m 19. Riding the bench for a Division III baseball team. But I’m in Cocoa, Florida, enjoying our annual spring break trip that includes ten games in seven days. The pain starts in my legs again. Heavy. Dull. Aching. Walking is hard, much less playing ball. A couple small purple wounds. My doctor sends me Prednisone via overnight shipping. A few months on it, and eventually it doesn’t hurt with every single step I take, walking from the furthest house on campus to my classes. Things get back to normal. In the deepest parts of my brain, I know my baseball days are done.

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I do this every day.

If necessary, apply topical treatment.
I’m 25. On a trip to my brother’s grad school graduation, my parents notice me caring for a giant purple scab on my left leg. (Looking back, I have no idea how I let it get that bad.) When we return home, I see my doctor — who refers me to the wound care department of a rehab/therapy facility. On my first visit, the specialist takes a look at my left leg (the outside part, mid-shin-high), puts on his latex gloves and grabs some kind of tweezers. I ask, “Uh, what are you doing?” He calmly replies that the scab has to come off.

He clips and tugs gently, and shockingly, the removal does not hurt. (I have a Polaroid of this actual moment, but I will spare you the visual. Unless you want to see it. Post in the Comments below if you’d like me to send you the photo.) Underneath the crusty purple scab is a half-inch-deep layer of what looks like wet pink goosebumps. He places a non-adhesive bandage on The Area (as I will refer to it now and forever) and wraps it with cling-roll bandages, followed by tape to hold the bandages on.

I am to return three times a week for hot whirlpool treatment, which sounds cool but is limited to my left leg below the knee. This is to debride (remove any bacteria, dirt, etc.) The Area and hopefully enable healing.

For several years, this kind of treatment — and many others — had varying degrees of success and failure in trying to heal The Area. Real skin graft. Artifical skin graft. My own plasma, spun in a centrifuge and frozen.

Some of The Area heals, breaking it into separate segments. But then it gets angry again, the segments join together and become one big nasty deep ulcer, which is finally diagnosed, properly, as pyoderma gangrenosum. (Google it only if you dare, yucky photos abound.)

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I do this every day.

Place bandage or gauze pad on The Area.
I’m somewhere between 25 and 30. (If you had all this in your head, you’d be fuzzy on dates too.)

A hacking winter cough leads to amoxicillin, which leads to a bad reaction, a fever, weakness and fatigue, and finally a hospital stay. The diagnosis is C. Difficile Colitis, seemingly brought on by the medication. While in the hospital, they test me and confirm that I also have Crohn’s colitis. And after trying a whirlpool treatment that had me literally screaming (you try putting your exposed nerve endings in swirling hot water), a surgical debridement is done. Because the pain of the surgery would be so great, they have to knock me out (and keep me going on morphine).

A few days later, I am quite possibly bending the metal bar on the side of my hospital bed as they attempt to remove the silver nitrate bandage that has protected The Area since the surgery. This is horror-movie-level pain. When I am finally released from the hospital, I am on 80mg of Prednisone a day (which will take about a year to slowly wean off of), as well as Oxycontin and a couple immunosuppressive drugs.

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I do this every day.

Apply three long strips of tape that extend beyond bandage to adhere to leg.
I’m 31. I’ve met a woman who could be The One. She’s gorgeous, she’s fun, she’s smart, and she challenges me. And somehow, I have to share all this with her without scaring her off.

“Hey, so we’re really getting along well here, and I need to let you know that I have two rare and chronic diseases, and there’s a giant ugly hole in my leg. Do you want to get an appetizer?”

(The above is NOT how it went. I honestly don’t remember. I do know I had enough sense not to have that discussion on the first date or before a meal.)

Regardless, she had to know what she was getting into. And I later found out that at first, it was difficult for her to handle — because my health issues could become very important in our shared future. Happily, she realized that my awesomeness (and humility) was worth any health issue we had to deal with. (Note: We’ve been married for 8 years now.)

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I do this every day.

Carefully pull compression sock over foot and then up leg to knee.
I’m 36. I’m tightly holding my wife’s hand in the operating room as our beautiful girls enter the world. It is the most surreal, wonderful, exhilarating experience of my life. And in the middle of it all, I wonder if these innocent little angels will have to deal with health issues like mine. I hope they don’t get any of my bad genes, only the good ones. Sadly, parents are pretty helpless in that department.

The girls were preemies, and both had 3-week NICU stays. You can read that story here, but suffice it to say that after a terrifying ordeal, the girls are healthy and amazing. I just want them to stay that way forever and ever. Is that too much to ask?

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I do this every day.

Go about day as if everything is normal.
I’m 41 as I write this. That number blows me away. I vividly remember thinking “wow, I’ll be 27 in the year 2000.” Well, here we are, 14 years after THAT. I’ve got a nice bald spot going on top of my head, plus some serious gray/silver happening in the remnants of my once-semi-glorious head of hair. And that’s no big deal.

My health is under control, thanks mostly to my Remicade infusions every six weeks or so. It’s no big deal, I get an IV infusion and work on my laptop during the four-hour treatment. If that’s what’s keeping away new wounds or Crohn’s flares, then it’s a tiny price to pay.

But every day, I go through the steps written here in bold type. And let’s be clear about something — there are many people who have it worse than me. I know this, and have reminded myself of this fact for years. There are pyoderma patients with wounds that never heal, or break out in much worse places than the lower leg. And there are Crohn’s and IBD patients who require surgeries and removal of intestines and all kinds of other life-changing procedures.

I didn’t write this for pity. I wrote it I was pushed by a buddy (thanks, Matthew) who believes you’re either a creator or a consumer — and I wanted to focus on being that first one for a bit.

Above all, I wanted to share a part of my daily routine that very few people know about, and even fewer can relate to. Maybe I wanted to persuade the 17 of you who read this to be grateful if you have your health. It is truly a gift to be cherished.  And to remember that there is always someone who has it worse than you.

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I do this every day.

Happy World Crohn’s & Colitis Day! (MySpace blog from 5.23.07)

Wednesday, May 23, 2007

Happy World Crohn’s and Colitis Day!
Current mood: awake

Seriously, that’s today. Don’t go out and try to get either disease, I think they just want us to educate people about it.

See more at http://www.trueguts.com or the True Guts page on MySpace.

If you don’t know me personally, you don’t know that I have Crohn’s colitis. And not just the “normal” version–my tummy problems didn’t really manifest themselves with big bad horrible stomach symptoms.

No, I developed pyoderma gangrenosum (say that 10x fast), which is basically large deep ulcers–mine appeared on my left leg between the ankle and knee. After a zillion different medications, a couple failed skin grafts (one real, one synthetic) and about 8 years of daily bandaging, I’ve been fully healed for about a year.

You may not know that I go for Remicade infusions every eight weeks, or that I take Imuran (an immunosuppressant) every day, or that I actually shrank a half-inch or so due to bone loss, thanks to long-term Prednisone use. (I know, you’ll all still think of me as a glorious 5’7″.) So I also take a bunch of calcium every day.

I’m not writing this to elicit sympathy or charitable contributions (which can be made to me directly, send e-mail for details). I’m trying to help the guy at TrueGuts.com get this thing going, because every other disease has a day…why not mine?