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

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.