By Leighann Sturgin
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 nights 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.
Two weeks ago, a few days shy of 8 weeks after my stoma revision surgery I started having pain in my incision. It had been healed and hadn’t hurt in weeks. At first, I thought I pulled a muscle. The pain continued to increase over a few days, then I noticed a fever on Saturday. By Monday morning the incision was swollen, red and warm so I called my PCP. I explained all of my symptoms and recent surgery and asked if he should see me or if I should call my surgeon in Cleveland. He said he would see me at 3:00. At his office, he pressed on the incision and it burst open….lots of pus poured out. He sent me to the closest Cleveland Clinic ER which is 45 minutes from my house. I waited in the waiting room for 2 hours, then another 2.5 hours before getting a CT scan to determine the depth of the infection. The doctor concluded this infection was from surgery. It had probably been there the whole time and wanted me to go back to my surgeon in Cleveland (an additional 45 minutes further from home) via ambulance. It was 1:00 am when I got to Cleveland Tuesday morning. They placed a drain tube and changed the IV antibiotics the ER started and kept me until the cultures grew so they could send me home on the correct antibiotic. I’ll be giving myself IV antibiotics at home for a few more weeks. I came home Thursday with the drain tube for the really deep pocket of infected fluid and quarter sized hole that burst open in the doctor's office leading to a cavity in my abdomen that I have to pack with gauze and change twice a day. The hole is directly below my stoma and so close I have to cut a little bit of the ostomy wafer off so the hole is uncovered. If my ostomy leaks, it will most definitely leak in the open hole which is likely to send me back to square one with the IV antibiotics and packing gauze in the hole twice a day. It feels like I’m recovering from surgery all over again. It's very unusual for this to happen so long after the 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 go back to 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 being denied for various reasons.
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.”