I have experienced active symptoms of Ulcerative Colitis for as long as I can remember, but I was finally diagnosed with the illness in 2010, my senior year of high school. At the time I suffered from extreme pain in the abdominal area (mainly my left side), extreme fatigue with adequate blood loss, frequent bathroom usage and constant nausea. During my hospital stay, I was placed on a high dosage of IV steroids and received blood transfusions until the physicians confirmed my diagnosis as UC.
For years after I would take Prednisone (off and on) to try to control and hide my symptoms. By 22 I had undergone many different treatments for my Colitis including pills, injections, and even infusions. All of which failed. My symptoms continued to get worse. I had multiple leaves from work in the year, multiple hospital stays. Even on my best day I was still very exhausted and dizzy from all of the blood I was losing. I was running to the bathroom over 15 times a day and ultimately had no life of my own. I lived around my UC. UC became my life. I wouldn’t go to events for fear of embarrassing myself. I was so embarrassed of my illness that eventually I would completely alienate myself from the outside world.
When my GI doctor suggested surgery (in 2014) I was highly skeptical and although he referred me to my surgeon in early 2014, I did not have my first consultation until much later in the year. I did a lot of research on surgical options, outcomes, and reviews. I went into my consultation with 60 questions written out on plain printing paper. The surgeon and I went through each question one by one. He volunteered a lot of useful information as well. The surgeon was extremely confident in his abilities which gave me confidence as well. I was scared to have the surgery series suggested (IPAA/ JPouch Surgeries) because I knew if it failed I would never be able to “get my large intestines back,” and therefore be left with an irreversible Ostomy.
Although terrified, I made the decision to give myself a better quality of life. I scheduled the surgery. My original scheduled surgery date came and I had a terrible infection. I was hospitalized but unable to undergo surgery for another few weeks, until I healed. A few weeks passed and in December of 2014 I had my first JPouch surgery, this left me with a temporary Ostomy. It was extremely hard to manage life with my new Ostomy, at least for the first month or so. I would call my home healthcare nurse to come out at all times of the night.
One night I even remember talking to her as she changed my bag over the toilet. She talked about how well I was handling things, how most people are usually crying or dwell in self-pity after their surgery. Here I was, sitting on a toilet in my grandma’s house, not well enough to go back to living on my own. No knowledge of how to change myself, how to handle the smallest incident with an Ostomy… I knew nothing, yet this healthcare professional is giving me praise? That night I went online and LEARNED. I did research, what did other people live like with their ostomies? What supplies do they prefer? How do they hide it in public? I learned the ins and outs of my Ostomy and my life was 1000% better. I was different, yet. But I was HAPPY. I could finally go out without being in pain or worrying about my symptoms. I finally felt relief.
Months later, April 2015 I would have my 2nd of the Jpouch surgeries. This surgery was much harder on my body. After surgery my heart stopped and I was placed on Oxygen for a while. My intestines didn’t “wake up” as fast as we’d hoped it would and I was in an immense amount of pain. I had to have help with everything from using the bathroom to doing my hair. By far the hardest recovery since being diagnosed. Time and surgeries passed and finally in July of 2015 I had my final reversal of my Ostomy and began to use my JPouch. 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 scars from surgery but my pain has been decreased dramatically, I haven’t been hospitalized since surgery. Ulcerative Colitis is an auto-immune disease and chronic illness. I am not cured, but I am happy.