What I want you to know about living life with a j-pouch

What I Want You to Know is a series of reader submissions. It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s guest post is by Heather.

A couple years ago, I wrote a post about living with ulcerative colitis, an embarrassing auto-immune disease that leaves you rushing to the bathroom, losing weight rapidly and becoming anemic. After living with this disease for seven years, I was getting weekly blood transfusions and my skin had turned an ashy gray color. When I hiked with my husband and toddler, I would notice my heartbeat racing and I would stop every few yards to catch my breath. Yet, thankfully I managed to maintain my professional status, interviewing and earning a promotion which required moving the family.
Three weeks after moving and starting this position, my husband called the gastroenterologist to say my meds weren't working. Within three days I was in the ER being told that I had the infection C-Diff spreading through my body and I was likely to die within days if I didn't go immediately into surgery to remove my large intestine. Because I was so sick, even the surgery had a significant mortality rate. So I called my immediate family members to say good-bye and my husband and I said desperate parting words, including me saying, "At least we have life insurance." I prayed and asked God to show me mercy and grace-- please let me join the cloud of witnesses. And then I woke up in the ICU where I stayed for a couple days. My boss came to visit and I tried talking business with a drainage tube down my throat. I had hallucinations that I can still remember and the nurses there gave me the best sponge bath ever. Eventually I was able to come home with a plastic bag attached to my abdomen where my small intestine was producing poop into the bag next to my belly button. There was also a huge incision from my ribs to my c-section scar and another opening where pus would come out of my rectum that had been surgically brought to the surface. I know, this is disgusting. It was frightening and my husband changed my wound dressings daily because I was scared to look at myself. I needed two more surgeries in the next seven months before my new j-pouch was constructed so my small intestine could function like my missing large one. I'm not even three months out of the last surgery but I am doing GREAT! I could have never predicted that I could regain health again. I don't have an ileostomy bag anymore and all my wounds have begun to become scars. I don't ever rush to the bathroom and I can even sleep through the night again. Every day I am grateful for the ability to live without pain. And last week, my 2-year old and I went hiking together. :) I am forever grateful for the opportunity to live. But I have one lingering concern-- I had long ago accepted that I would die young because of complications from ulcerative colitis. Now I don't know how I will die. Or how long I'll live. As I begin to embrace life, I have yet to embrace the unknowns.

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