I work at a fast-paced tech company as a project manager and play music in a local band. I graduated from UW Madison with a BA in communications.
I first noticed symptoms of UC in high school: blood in my stool, excessive cramping (distinctive from menstrual cramps), and constipation rather than urgency.
I was first diagnosed with IBS and prescribed Zelnorm and metamucil. I noticed things getting worse as time went on and my symptoms shifted from constipation to very urgent episodes. I was a distance runner and that activity only made my symptoms worse and less predictable. I didn't like drawing attention to my condition or my symptoms because of the nature of them - it's embarrassing and annoying, especially for a high school student. So I chose to attempt to ignore it and deal with it as much as I could.
After graduation and beginning of college, my symptoms worsened tenfold. I was seen by a different GI doctor for a colonoscopy (full sedation) and diagnosed with a C. Difficile infection. A few weeks into antibiotic treatment for that, my symptoms did not improve, so I had a follow up visit with yet a different specialist for an endoscopy (conscious sedation). This time I was diagnosed with Crohn's disease and prescribed Azacol.
The first two years of college were very difficult as I was taking Azacol with spotty improvements. For the most part I was not much better, not as one should be on medication, and struggled with the urgency and unpredictability of my digestive system. I was also very anemic due to the loss of blood, so I was tired often. Combined with my college schedule and demands, I fell into my habit of trying to avoid dealing with it as much as possible. I had to leave classes and even exams often to go to the bathroom; multiple times during one class, probably raising suspicions of some of my professors. Every 6 months or so I would develop a pretty bad flu with chills and loss of appetite. Besides those times, I didn't experience a lack of appetite and I wasn't losing weight.
Once I decided enough was enough and to go back to the doctor that diagnosed me with Crohn's. I did a procedure where I swallowed a camera the size of a horse-pill and attached sensors to my body around 2006 and was re-diagnosed with U.C. based on the results of that as well as the 'clues' that I had UC and not Crohn's: wasn't losing weight, only affected my colon, not even the terminal ileum or rectum. I was to remain on the Azacol medication anyway.
Soon after I had a bad experience with Azacol - it "back-fired" on me, again with flu-like symptoms, chills, vomiting, two years into the treatment so I stopped taking it. After that I was disillusioned with medications and my doctors so stopped seeing them and instead tried regular contact with a nutritionist per the advice of a family acquaintance. I was on a white-grains only diet (white flour-only pasta, bread, or rice + water) for about 3-4 months in 2007, which did allow my colon to heal the open wounds I'd had for so long that caused me to bleed. Though I had very little energy during that time. After that I slowly incorporated protein and fiber back into my diet, in that order. This was a very slow process to build back to eating regularly and the 30 minute calls with the nutritionist cost me $30/week which was not sustainble for me being a senior in college with no money and needing to stay awake to write papers, go to class, work, etc. Caffeine and sugar were strictly to be avoided as they released adrenaline into my system; a chemical which my nutritionist believed affects those with UC more than other people. It acts like an acid in the colon, making it develop sores and ulcers more easily. I did find this to be true for me.
After I stopped seeing the nutritionist, my symptoms grew worse again, but not as bad as they were before. I seriously considered Remicade and was even getting happy about the idea of surgically removing my colon to stop my symptoms, so I made an appointment with yet a different specialist. At this point I had graduated college and got my first real job that offered me health insurance. This was my ticket to try someone new and maybe do something drastic. At this point anything was better than what I had going for me at the time.
Dr. Saha at UW Health listened to my full history and did a physical exam. This was in 2008. She said that some patients react poorly to Azacol after awhile and prescribed me Sulfasalazine instead. At first I was taking 3 500mg pills/day and then we worked up to 2 500mg pills 4x/day. I began to feel better after about a month of taking it; it felt miraculous. I've been taking this for 2.5 years and it's still working very well for me. I do notice if I have excessive amounts of caffeine, sugar, or fatty foods that I feel worse, and I also notice feeling worse if I fall behind on my medication schedule. If I'm experiencing a lot of stress, I also notice a difference. My lifestyle and job keep me very busy and my normal level of stress is probably pretty high to begin with, so it takes a lot in order for me to relapse these days. I wouldn't say I'm 100% normal compared to those that do not have UC, but I'd feel confident saying I'm maybe 75% of the way there. I have accepted my condition as something that will never fully go away, and I'm pretty happy with that. In fact, it bothers me more when people keep asking me about it or if I'm ok. :)
I hope my story helps some people out there with UC. I look forward to reading others' experiences.
Apr 14, 2011
Sep 14, 2011
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