Once I Learned The Ins And Outs Of An Ostomy My Life Was 1000% Better

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For as long as I can remember, I’ve experienced active symptoms of IBD. In high school I suffered from extreme pain in my abdominal area (mainly the left side), severe fatigue, frequent bathroom use, and constant nausea. During a hospital stay in 2010, I was placed on a high dosage of IV steroids and received blood transfusions until the physicians confirmed the diagnosis as ulcerative colitis in my senior year.

The illness became my life.

By age 22 I had undergone many different treatments for UC to try to control the symptoms. Pills, injections, infusions, and for years I was on Prednisone (off and on)… all which failed. My symptoms continued to get worse. I had multiple leaves from work, and multiple hospital stays. Even on my best day I was still exhausted and dizzy from all of the blood I was losing. I was running to the bathroom over 15 times a day and basically had no life of my own. I wouldn’t go to events for fear of embarrassing myself. I was so self-conscious because of the illness that eventually I completely alienated myself from the outside world.

When my GI doctor suggested surgical treatment I was highly skeptical. Although he referred me to a colorectal surgeon in early 2014, I did not have my first consultation until much later in the year. I wanted time to do a lot of research on surgical options, outcomes and reviews. I went into my consultation with 60 questions written out on paper and the surgeon and I went through each question one by one. He volunteered a lot of useful information and was very confident in his abilities which gave me confidence as well. I was scared to have the three-step surgery for a J-pouch because I knew if it failed I would never be able to “get my large intestines back” and would be left with a permanent ileostomy. Although terrified, I made the decision to go forward and give myself a better quality of life. I scheduled the first surgery in December, 2014 which left me with a temporary ileostomy.

 Goodbye large intestines.

Goodbye large intestines.

It was extremely hard to manage life with a new ostomy, at least for the first month or so. I called on my home healthcare nurse to come out at all hours of the night. I remember one night talking to her as she changed my bag over the toilet. She mentioned about how well I was handling everything, and told me how many ostomates feel depressed and discouraged after their surgery. Here I was, sitting on a toilet in my grandma’s house, not well enough to live on my own... with no knowledge of how to change the appliance myself, or how to handle the smallest incident… I knew nothing, yet my ostomy nurse was giving me praise? That night I went online and LEARNED. I researched everything. How do other people live with their ostomies? What supplies do they prefer? How do they hide the bag in public?

Once I learned the ins and outs of an ostomy my life was 1000% better. I was different, but I was HAPPY. I finally felt relief and could go out without being in pain or worrying about embarrassing symptoms. In April, 2015 (a few days before my 23rd birthday) I had the second step of the J-pouch surgery which was by far this was the hardest recovery since being diagnosed. After surgery my heart actually stopped and I had to be placed on oxygen for a while. My intestines didn’t “wake up” as fast as we’d hoped and I was in a massive amount of pain. I needed help with everything from using the bathroom to doing my hair. Time past and in July, 2015 I had the final surgery which was a reversal of my ileostomy and full use of my J-pouch. It was an extremely long and tough road but I am so happy with my results and don’t regret a thing! I still have some symptoms of UC and the scars from multiple surgeries, but the pain has decreased dramatically and I haven’t been hospitalized since. I am not cured, but I am happy.

my J-pouch buddy, Amber of Colitis Ninja!

with my J-pouch buddy, Amber of colitisninja.com

A version of this post originally appeared on MoreSpoons.com.