I'd Like To Have One Day Off Being An Ostomate

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I’d like to have One Day Off. One day that I didn’t have to think about the crapsack on my belly. One day I didn’t hear the bag crinkle or my stoma didn’t make weird, loud, embarrassing noises. One day I’m not worried about the crapsack leaking. One day I didn’t need to know where every bathroom along my path was located. I just want one day off from my skin hurting all the time.

I believe there’s a reason God put our noses on our face and our poop hole on our backsides. Nobody was ever supposed to poop out of a hole in their belly. I’d like a day off. I’m grateful some brilliant doctors figured out people can live like this because I know without it I’d be dead. I don’t want to be dead. I want one day to sit on the toilet and poop the way God intended. You healthy-colon people take this experience for granted. Not joking. When’s the last time you thanked God for your colon? For your small intestines? You put all that garbage in your mouth and expect miracles… magically… poop comes out of your butt.

I want one day without Short Bowel Syndrome.

One day I can eat anything without fear of obstruction. One day I can drink anything I want. One day without a tube (Hickman Catheter) sticking out of my chest. One warm sunny day I can jump in a lake, pond or river without putting my life in jeopardy. One day without IV nutrition and fluids. One day to shower without tubes, bags or open wounds. One full night’s sleep without tubes, IV, crapsack and 3 trips to the bathroom.

One day without a mountain of medical supplies to maintain… this is a bigger job than you realize. The financial burden, ordering the correct amount at the right time, organization and storage, recycling all the boxes and packaging. It seems like there is always a stack of boxes and bubble wrap at my house. It’s hard to keep up. I’m grateful to have access and insurance for these supplies but I wish I could have just ONE DAY OFF.

I’d like to have one day off from having to watch people I love battle cancer.

One day they suffer no pain. No nerve pain. No headaches. No back pain. One day off of treatment. One day off from feeling sick, nauseous, scared and tired. If I could have one day off I’d only want it if they could have it too.

I’m usually a pretty positive person. I don’t sit around and have pity parties for myself… often. I’m just feeling a little overwhelmed today and I’m sure I’m not alone. So I’m going to post this blog because it’s the truth. It’s my truth. Today. It’s such a dichotomy feeling grateful to be alive and cancer free and frustrated with SBS and all the junk that goes with it. It creates so much turmoil in my mind. However, since this isn’t my day off I’m going to be grateful for what I have and choose to be happy even if I don’t feel it. Happiness is a choice not a feeling.

As I conclude this pity party let me leave you with these words of wisdom.

If you are healthy today consider this your day off and really, genuinely, appreciate and enjoy it. Be good to your body. If you’re over 50, GET A COLONOSCOPY. If you’re not healthy, if you know something is wrong, go to a doctor. If the first doctor doesn’t find anything or won’t listen but you KNOW something is wrong, go to another doctor. If your poop is irregular insist on a colonoscopy. Don’t let any medical professional tell you “you’re too young for colon cancer.”

photo by Mark McCarty Photography

photo by Mark McCarty Photography