stoma

Bag: a container that is open at the top, often with handles, that is used to carry things

Depending on who you are, the word bag can bring to mind a number of different images. It is however, unlikely that unless you have had surgery for Ulcerative Colitis, Crohns, or cancerous lesions in the large or small intestine, an ileostomy bag would come to mind. This is truly one of the ugliest bags possible, which fortunately largely remains hidden under clothes. Except when someone asks to see it. To have people look at part of my body protruding into a clear plastic bag attached to my stomach with adhesive tape and then running away to be sick or feel faint as a result of seeing it, are difficult memories.

An ileostomy can mean an opening (stoma) constructed by bringing the end of the small intestine (the ileum) out onto the surface of the skin and can also refer to the surgical procedure which creates this opening.
The purpose of this procedure is to divert the flow of waste matter while the surgically made pouch is healing. The waste is collected in a bag which can come in a number of forms depending on the needs of the patient.

I felt a heaviness from the bag as soon as my pain decreased and I became aware of other sensations. The heaviness was both physical and emotional and was a complex mix of feelings including horror, disgust, defeat, curiosity as well as a strong feeling of being challenged. The horror and disgust came from the large hole on the right of my abdomen which would not heal because I was still on high doses of cortisone. The adhesive tape in the shape of the circular stoma was meant to fit neatly around the hole. But because of the irregular swelling which made my stomach look like an extreme mountain bike track and the larger than usual stoma, attaching the bag securely was a challenge. I remember the stoma nurse packing the wound with medicinal seaweed to encourage healing. I felt as if my body and personality were separate. I imagine it was a necessary detachment. The feeling of defeat came from needing to have my colon removed, and having an ileostomy bag felt like a terrible loss. But truthfully, I was curious. I was curious to experience living with a bag. I was curious to know how I would respond. I felt challenged by the experience as if I had been taunted and needed to confront the aggressor. I was determined to be the victor.

Once I had become more familiar with the bag and knew how to control the output of pouring liquid, there were a number of benefits. Certainly far better than going to the toilet every few minutes with uncontrolled diarrhea. Going to the toilet at functions was no longer an anxiety-provoking humiliation. The bag needed to be held over the toilet basin, unclipped at the bottom and the largely odourless contents would soundlessly be drained. There was no feeling of needing to go to the bathroom. No fullness or discomfort. The bag filled with very little sensation as the stoma has no nerve endings.

Six weeks later, the night before I was due to have the reversal operation, the adhesive would not stick to my skin so the bag could not be secured. I spent hours trying to secure it. It signalled for me the end of a struggle and a subconscious refusal to allow this to be part of my life. Waking up in the intensive care unit after the operation the next day was almost exhilarating. There was no pain at all and a feeling of lightness where the bag had once been. My spirit felt the same unburdening. I felt hopeful and confident. This truly was a miracle operation. And my reconstructed pouch worked perfectly, just as it was meant to.

And now, bag would no longer mean a plastic pouch hanging from my body collecting waste matter but rather, a container that is open at the top, often with handles, that is used to carry things.
Hope, restoration, healing.

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