Saturday, September 8, 2012

It's getting real

It's getting real - real old, real fast. I haven't felt much of anything lately. If you have asked me "how are you feeling" in the past few months you probably got my standard "great!" response or my tried and true "I'm fine!". I lie. I lie. I lie. WHY do I do that? It isn't helpful to anyone, certainly not to me. If I tell people I am fine then a few weeks later I blog something like this and everyone is confused! Just like when I was sick (more sick?) with Crohn's symptoms - instead of telling people I was fine, going ahead with plans because I didn't want to disappoint anyone and making believe that it was all rainbows and unicorns I SHOULD HAVE just said I FEEL LIKE HELL. And if no one "got it" or understood, meh - move on.

So, here I am back in that same horrible cycle. Well, guess what readers. I am NOT fine. There, I said it. I told the truth. Do you know WHY I am not fine? Everything SHOULD be hunky dorey right? I mean, I had surgery, I don't have to run to the bathroom every 45seconds, I made cross country road trip with my kids and there were no major incidents to report. Life is fine. On the outside I suppose it is, but inside these walls it is anything but.

What Crohn's disease did to my insides, surgery has now done to my outsides. I hate my body. I'm pissed. I'm mad. I feel like having a pity party but I KNOW that my "issues" are SO the bottom of the barrel compared to other's lives. Which in turn makes me feel pathetic.

The other day I started watching YouTube videos - I have NO idea why, I guess I was bored. Oh wait, I remember. I was watching little Elijah's videoabout his new ostomy and then I just started clicking videos that popped up along the side of the screen.

And I started to get mad. Jealous. Angry. Depressed. The people I saw had little to no scar on the bellies. Perfectly intact skin around their stomas. Tiny mid-sections. You can go to YouTube and google to see the same things I saw - you know what you WON'T see? You probably won't see anyone with a horrendous malformed abdomen like mine. Yes, I said it. And now I regret it. All I have to do is close my eyes and put myself back at SAMMC that day to see that soldier with burns covering his face and his amputate limbs to realize that my issues are so miniscule. Silver lining, I'm always talking about it....I always need to find it.

I need people to KNOW that I am not "fine". I'm not "okay". Close? Yes. But yet still so far away. It's not that I necessarily care WHAT people think about me and what has been going on with my disease - I can handle the snide comments or the roll of the eyes people so often share. But somewhere out there is someone who doesn't yet have it in them to fend off that kind of ignorance, rudeness or just flat out mean people. I can help those people - if I can stand up and say HEY LOOK AT MY BODY and what Crohn's is doing to it, then maybe someone else will be able to say I HAVE CROHN'S DISEASE. It's a step. And the more steps we take, the more awareness there is. The more awareness means more attention. More attention means more research....and that my friends will hopefully someday mean a cure for this wretched disease.

So, it is a about to get real up in this piece - as my husband likes to say. You are warned. I am going to share pictures that only a handful of people have seen of my body being ravaged by extra-intestinal Crohn's disease in the form of pyoderma gangrenosum. Yeah, it even SOUNDS bad doesn't it? Ick. I'm not posting this picture to garner attention for myself or have people shower me with condolences and whatnots. I am sharing it because I want to spread awareness - Crohn's disease does NOT leave you alone! It is always with you and it WILL raise its ugly head whenever it damn well feels like it. I would take this pyoderma problem ANY DAY OF THE WEEK over the Crohn's related problems I was having just a year ago.

I repeat, you have been warned - graphic picture to follow of peristomal pyoderma.

Seriously, click away now if you are not prepared.

Last chance.

Taken June 12, 2012. In case you are slow on the math like me - that is almost 3 months ago. That wasn't the first picture of it. It started way back in April - so this photo is 2 months into it. That's 5 emm effing months I have been dealing with this BS. Can ya tell I am mad!? Those are open lesions on my skin that I have to (attempt) to apply an adhesive barrier over. Try putting the sticky part of a bandaid on your just out of the shower skin - before you dry off. Doesn't work too well does it? Same principle here. I just want to be my new normal. I want to wear my ostomy pouch like a normal ostomate. I want the process to take 5 minutes not 15 or 20 like it does now. This isn't even the end of the fun with my skin either. I'll share what has evolved in my next post.


  1. I have heard/read your comments about how others have worse problems and that yours are miniscule... and while I want you to think about others that you see such as those at SAMMC to help your perspective, I really HATE that you beat yourself up for feeling bad about things. Everyone should be allowed to think that life sucks once in awhile!

  2. While it is always good to remember the old adage "be kind to all you meet because everyone is fighting a tougher battle than you" I think that's because whatever battle we're fighting (and I think we're all fighting one) it's the toughest battle. It's the toughest thing we're going to fight right at this minute in our own skin.

    Comparing yourself to someone else is like comparing apples to oranges.

    Acknowledge the suckiness, but don't berate yourself for having issues that have to be dealt with.

  3. Hi. Just followed a link to your blog while searching for ideas on wound coverings for PG around a stoma. My wife is battling the same thing. Her first go around was shortly after her initial illeostomy in June of 08. Since that date, she has had a relocation. Everything was fine for about 6 months then the PG came back with a vengeance. PG has completely surrounded her stoma. At least 1 barrier / bag change a day. It's horrible.