Navigating the Joy and Pain
“We will remove your colon and create a hole in your belly for a piece of your small bowel to come out of. It will empty into a bag. And then anywhere between 6 months to a year, we will reverse it into the j-pouch we were talking about yesterday. I know it’s fast. I know it’s a lot. The wonderful thing is, you will live.”
The conversation is burned into my consciousness. Word for word, I can hear it, and I smell the hand sanitizer in the air and the latex gloves. I can feel the scratchy fabric of the hospital gown. I had been given options on how to save my colon two days before this conversation, however, the colonoscopy performed an hour before this conversation changed the entire plan. I was dying. There was no way to sugarcoat it. But the team of surgeons was not willing to give up so easily. This was my last opportunity to make sure I made it to my son’s third birthday.
A second chance at life with an ostomy
My head was spinning. Trying to find a place to land between joy and despair. The idea that I would have a second chance to be the mother I intended to be. Present and healthy. A second chance to accomplish all of the things I had started and dare dream to finish. A reset on my life. And yet, my body would be altered. Scars on scars on scars on scars. Procedures and surgeries had become my life since my diagnosis of ulcerative colitis in 2008. However, this was different.
My social and romantic life was heading in a new direction, as well. Earlier that year, I had become a single mother. I had no job, no home of my own, no independence. And now I was setting off with no colon and a piece of bowel hanging out of my stomach. I struggled with the vanity of it and the gratitude for life. Everyone kept telling me to not think about the stoma itself, be grateful. I was grateful. Very appreciative. I was also going to poop out of my stomach. Not one person who had a plan for my life with a stoma had actually lived with a stoma. Except for one person, my younger cousin, who was living with Crohn’s disease. She had her resection on her 16th birthday and had recently had her reversal. Her words carried me through.
Support and help from others who have an ostomy
I have over 20 cousins just in my immediate tribe of close family. We were all bonded in some way and are genuinely friends. This particular cousin and I are incredibly close. Ironically, our fates were the same. When the ET (enterostomal therapy) nurse came to chat with me about my stoma and living with an ostomy, she encouraged me to seek out support groups.
Find someone who has lived or is living with an ostomy and make them your person. I was fortunate. My person was a friend I had most of my life, my cousin. She understood my struggle with the joy and pain of living with an ostomy. I wasn’t struggling so much with the stoma itself, as I was with the reason I had the stoma. My disease had gotten the best of me. I felt defeated. I felt like a failure. I had been told that I was never a candidate for surgery because I was not that bad. However, I was that bad and had been for a long time. I was just receiving poor healthcare & medical advice.
It was difficult to accept this surgery
IBD related surgery was never presented to me as a treatment that could increase my quality of life. Or as a method of intervention to help my therapy heal my body. Because of this, my view of surgery was bleak. Which made my acceptance of surgery, desolate. I took it personally, believing I had failed my family, myself, and most of all, my child. I had somehow thought that I was the reason for the decline in my health, and nothing to do with the inflammation wreaking havoc on my insides coinciding with emergency room care sprinkled with GI care when I could afford it. I didn’t blame Congress for making it hard for me to receive proper healthcare. I didn’t blame an arrogant ill-informed GI who didn’t specialize in IBD. I didn’t blame the insurer for either dropping me from coverage or not covering my medication. I blamed me.
I blamed myself for my ulcerative colitis
I blamed the skinny girl, with shedding hair and gray teeth. I blamed the mother in me who taught her son to read from her bed or couch. I blamed the producer in me who took a step back from her dream job and opportunities to focus on her health and family. I blamed the lover in me who didn’t have the energy to celebrate milestone birthdays or do date nights with other couples for more than an hour without visiting every single bathroom. I blamed the girl who looked sick and didn’t know she was as ill as she was. I hated the girl for being stupid, but I loved her for being brave.
I hated the stoma that it represented the death of one part of my life but loved it for the experience it was about to give me. Joy and pain. Finding the balance in the truth of it not being my fault. Find the silver lining through the fog of defeat. Finding the courage to forgive me for something that wasn’t my fault. Loving myself through body dysmorphia and fear of loneliness. Seeing the light through the darkness. Find the life I had yearned for and finally living it.
Life was better with an ostomy
I thought I would spend the rest of my days mourning my pre-surgical life. I have found that it’s actually the opposite. I am so grateful for the opportunity my stoma gave me to live my best life yet. My second act has been better than the first. And it’s only going to continue to get better. On this ostomy awareness day, I am living in self-awareness. Awareness of where I have been and where I am going, because of my ostomy.
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