Restoration

Restore: to give back something that was lost or stolen One of the options available to people with extensive uncontrolled disease of the colon is what is known as a ‘restorative proctocolectomy with ileal reservoir’ or a ‘pouch’ procedure. The aim of the operation is to remove the entire diseased bowel as well as to avoid a permanent ileostomy (bag). The operation is done in two stages by most surgeons: the pouch operation with a temporary ileostomy to allow healing of the surgical joins, and the removal of the bag and closure of the ileostomy site after approximately six weeks. During the operation the abdomen is opened and the colon and rectum are removed to just above the anal sphincter. A reservoir is made out of the small intestine. This is done by folding it onto itself and then joining the folds together using specialized stapling machines to form a bag-like structure. The reservoir is then joined to the anus using the staple-machine so that it will be possible to go to the toilet in the usual way. The purpose of the temporary ileostomy is to prevent the faeces from coming into contact with the staples during the healing period after the operation. That is the factual explanation of the procedure that I underwent. The experience of it was filled with emotion, pain and trauma such that the description feels incomplete. At the time of the operation, I was so ill that I was desperate for relief. I attended pre-operative counselling where everything was explained and I could ask any questions and discuss any fears. In reality, I was too overwhelmed. I didn’t want to be so ill, but I didn’t want to have surgery. I definitely didn’t want to have a clear plastic bag hanging from my twenty-six year old body. I didn’t want to give up my job in London, but I was a locum and my position could only be kept open for a short period of time. I didn’t want to give up my room in London, but my friends had to pack everything up for me and put it in storage in their homes. I didn’t want my family, my friends, or my boyfriend to endure pain because of me. But watching someone close to you endure suffering, cannot be without pain. I needed a blood transfusion because I was so anaemic. My gastroenterologist recommended donor blood from people I knew. I can never and have never adequately been able to express my gratitude to my friends, my family and their friends and family who donated their o-negative blood to me. The six pints that I needed were all donated within a few days. When my blood transfusion began in the ward the day before the operation, I started to have some understanding of what was to come and the frightening state of my illness. The operation was going to restore to me what I had lost. I would again be physically healthy and have an active and full life unimpeded by chronic illness. But restoration is more complex than just the recovery of health. Waking up in the intensive care unit after the six hour operation was traumatic in a way that cannot be fully articulated. Even though I had an epidural which had some numbing effect, I could feel the pain clearly and sharply. I was on oxygen, fed through a vein in my neck, hydrated and partially medicated through a drip in my arm, wires were attached to machines monitoring my heart and my breathing, tubes temporarily stitched into my body to drain fluids and a catheter for urine. Although shifting position would have intensified the already almost unbearable pain, not being able to move made me feel totally powerless and dependent on people that I was forced to trust rather than had grown to trust. I was asked to rate my pain when needing additional relief, but frequently could not speak because of its intensity. The nurse would assume that my pain was adequately controlled. It was a time where screaming could have communicated my needs effectively, but screaming is impossible without being able to take a deep breath. All I wanted was for someone I loved to sit where I could see and touch them all the time. This was not allowed, so that the staff could take care of our physical needs. But our emotional needs were therefore largely unmet. The nights were the loneliest and most frightening. The ever-moving shadows and noisy machines that could never be a background hum became menacing. The terror of being undefended was overwhelming, competing with the unrelenting pain. In reclaiming something that was lost, it felt as if something else was stolen. The beginning of physical restoration certainly, but coupled with a new loss that would require restoration in a different form.

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