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I would like to have one day off from being an ostomate

It's important to have the freedom to say that.

This post appeared on The Colon Club and is reprinted with permission.

photo by Mark McCarty Photography

photo credit: Mark McCarty Photography

I’d like to have ONE DAY OFF. One day that I didn’t have to think about the sack of crap on my belly. One day where I don't hear the bag crinkle or my stoma make weird, loud, embarrassing noises. One day that I’m not worried about my crapsack leaking. One day where I don’t need to know where every bathroom along my path is 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 holes on our backside. Nobody was ever supposed to crap into a bag through a hole in their stomach. I’d like a day off. I’m grateful some brilliant doctors figured out that people can actually live like this because I know without an ostomy I’d be dead. I don’t want to be dead. I just want one day of sitting on the toilet and pooping the "normal" way. You people-with-healthy-intestines may take this experience for granted. Not joking. When’s the last time you thanked God for your colon? For your small intestine? 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 an obstruction. One day I can drink anything I want. One day without a Hickman Catheter sticking out of my chest. One warm sunny day that I can jump in a lake 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 three trips to the bathroom to empty my bag.

I'd like 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. There is always a stack of boxes and bubble wrap from medical suppliers 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 ONE DAY OFF.

Eight weeks after my stoma revision surgery, I started having pain near the incision. At first, I thought I pulled a muscle but the pain continued to increase over a few days and then I noticed a fever so I called my doctor and made an appointment that same day. At his office, he pressed on the incision and it burst open… lots of pus poured out. He sent me to the closest ER which is 45 minutes from my house. I sat in the waiting room for two hours, then waited another two hours before getting a CT scan to determine the severity of the infection. The ER doctor wanted me to see my colorectal surgeon in Cleveland (which was 45 minutes further away) via ambulance. It was 1:00 am when I got to the hospital on Tuesday morning. I stayed until more tests came back so they could send me home on the correct antibiotic. I came home with a drain tube for the really deep pocket of infected fluid and a quarter sized hole in my abdomen that I had to pack with gauze and change twice per day. The hole was directly below my stoma, so close that I had to trim the wafer so it remained uncovered. If my ostomy appliance leaks, it will spill into the hole which is likely to send me back to square one. It feels like I’m recovering from surgery all over again. It’s very unusual for this to happen so long after surgery. I’m the definition of unusual.

Yesterday I got a bill from the ambulance company for $929 which my insurance has denied, stating it wasn’t a medical emergency for me to see my surgeon. I want a day off of fighting with insurance companies and hospital bills. I have several other bills from the surgery that are denied for various reasons too.

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 a day off 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. I’m writing this because it’s the truth. It’s my truth. Today. It’s such a dichotomy feeling grateful to be alive and cancer-free, yet so frustrated with SBS and all the junk that goes with it. It creates a lot of turmoil in my mind. But 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.”