Hello everyone! My name is Kelsey Scarborough. I live on the East Coast and I’ve been a colostomate for the last three years. To introduce myself, I wanted to tell you about my diagnosis and my decision to undergo surgery.
I lived my whole life a healthy child and young adult until my sophomore year of college at the University of Vermont. During my second year, I started having stomach cramping and eventually blood in my stool. At 18 years old, I did what you shouldn’t do: I went online and convinced myself I had cancer. I quickly scheduled an appointment with my primary doctor and explained to her that I had been having stomach cramping, diarrhea, and bloody stools. She diagnosed me with irritable bowel syndrome, gave me some medicine that was not helpful, and referred me to a gastroenterologist.
It took me almost eight months to see the gastroenterologist. My primary doctor, who happened to be a longtime friend of my mom, referred me to the top GI specialist around. While this was great in theory, his status made it hard to get an appointment with him. When I was first referred to him, I was experiencing cramping, diarrhea, urgency and bloody stools. By the time those eight months passed, however, my symptoms has escalated to dehydration, large amounts of blood in my stools, debilitating stomach pain and severe rectal pain. I was mainly eating iceberg lettuce and boiled eggs, as these seemed to go down easiest, and I knew where every bathroom stop was around campus. I was desperate.
When I finally got to see the GI specialist, I only saw him for ten minutes, and during this time we scheduled a colonoscopy. I remember starting to elaborate on what I was experiencing, and he interrupted me and insisted that I needed to schedule a colonoscopy. After waiting eight months to see him, I felt rushed and not listened to; but at the same time I felt relieved that he was going to do a test — something that would give answers and hopefully lead to a solution. (It’s funny looking back at this awkward and brief encounter now, as my doctor and I are quite close and he always tells the receptionists I’m a VIP when I go to schedule follow-ups.)
My initial colonoscopy revealed that I had ulcerative colitis. I didn’t know what that meant, but I had moved on from thinking that I had cancer to thinking that I had ulcers from all the stress school was putting me under. I was surprised and scared to learn that this was not a condition we could “cure.” I remember thinking, But I’m not a girl with a chronic disease. I’ve never had anything seriously wrong with me, not even a broken bone. That said, I was relieved to have a concrete answer to what was going on with me and by the doctor telling me that this could be managed quite well (not quite true in my case, but that was a later discovery).
After this initial appointment, we tried all sorts of medications — suppositories, injections, more injections, pills. Nothing worked. I took a leave of absence from college three days before my senior year began.
I would sit at home alone with tears in my eyes all day while friends and family were out living or even just going to work (something many people take for granted). I wouldn’t eat much — just watch TV, knit, color, and pet my dog. I had met my boyfriend only a year before I got sick and I had never been so happy in my whole life. Then when I got sick, I had to miss out on everything. I tried to break up with him but he laughed at the idea and promised we would find a way to make me better and that he would be right there until then and after then. (He wasn’t lying, apparently, as last summer he asked me to marry him.) At that time, though, I basically just sat around waiting and hoping for a new medicine or another round of prednisone to give me a good day or two.
One day when the FedEx man came to deliver my medication, there was a note on the door that no one was home because I was in the ER. (I was in and out of the ER quite a bit during this phase because I was in so much pain and nothing was helping. I would stick it out for a few days and then go to the ER to see if they could do something until I could see my GI doctor again.) The next day, the FedEx man came back with my medicine and told me about a temporary colostomy that he had for diverticulitis. I did not know before this that an ostomy could be temporary. That’s when I decided I would have a temporary colostomy in hopes of resting my colon and ending my UC misery.
After about a year of steroids, suffering, and trying all kinds of medications with no relief, I told my doctor that I wanted to have a temporary ostomy. He agreed that this was an appropriate next step for me, and I underwent surgery by the end of that week. The plan was to reverse my colostomy in six months, after my bowel had time to rest. However, a colonoscopy six months post-op showed that my colon had not healed and reversal would only land me back to sickness and pain.
While I was ready to have my colostomy reversed, I was also scared to and rather relieved to keep it. The idea of reversing my ostomy only sent me into flashbacks of the pain, suffering, and lack of living I had endured before my surgery.
I was not ready to chance going back to that life with ostomy reversal surgery, so when my doctor said I wasn’t healing, I was relieved. Of course, I was a little disappointed, too, but I will never risk going back to that life.
Breaking Free
Since my surgery, I’ve gone back to school, this time for nursing, and I’m now in my senior year. Picking a new major meant I had to do three extra years of school, but now I am almost done (again)! I’ve been to Honduras on a medical mission with my nursing class, and my class still doesn’t know I have an ostomy, even after bunking in a room of 20 girls with just three bathrooms and showers with teeny curtains. I’ve gone to Seattle and San Diego to participate in Youth Rally (a camp for children with bowel and bladder conditions and diversions) as a camp counselor. Now that I’m engaged, I have begun (sort of) to plan my wedding.
But mostly I have been happy, something I surely was not when I was so sick. I have come so far since my “sick days,” and none of it would have been possible without my ostomy surgery.
Read more about Kelsey and find other helpful articles:
How can one limit ostomy output while sleeping?
