BIO: My name is Christiana. I am 20 years old and was diagnosed at the age of 18 after a year undiagnosed. I lost 50 pounds before diagnosis, down to 98 pounds at 5’8″. Since diagnosis, I was in remission for about the first six months on prednisone, but have experiencing a seemingly unending flare for the past year.
Some more background details:
I enjoy working out, but haven’t been able to for quite some time. Every time I even think about going to the gym I end up having to trot off to the bathroom for the next few hours.
My Colitis Right Now:
Currently, I have what I’d describe as a sour stomach most days. On my bad days, I’ll have a two hour period where I’m essentially stuck in the bathroom.
Chasing After the Ever Elusive Remission
I first noticed symptoms two days before Christmas 2011 during my senior year of high school. A hemorrhoid formed and I started noticing blood in my stool. My starting weight was about 138 pounds. I lost five pounds between Christmas and New Years. From there it continued to get worse. I was getting up 3-4 times during the night for a BM. Luckily, the urge to go would disappear before I got to school in the morning. During this time, I began experiencing fatigue and several new hemorrhoids formed. At the time of my graduation in June 2012 I weighed about 125 pounds.
The summer of 2012 my symptoms worsened considerably. I had essentially no appetite. I was tired all of the time. Because I could barely eat, I didn’t have much in my system to form into stool, but I still felt the urge to go, oftentimes 10+ times a day. My hair was falling out, to the point where any time I’d run my fingers through it, I’d end up with a handful of hair. It wasn’t until the end of the summer that I finally admitted to my mom that I was experiencing frequent diarrhea. At this point, it was too late to meet with a gastroenterologist because I would be leaving for college in a few days. By the end of summer 2012 I weighed 111 pounds.
My first semester of college was rough. I found it difficult to make friends as I did not have the energy to go out and meet people nor did I want to have to explain why I wanted to stay close to a bathroom to people I had just met. By the end of the semester I was down to 98 pounds. At 5’8″ I was skin and bones, able to count my ribs and every single vertebrae. I could wrap my hands around my thighs and I had a thigh gap the size of my fist. Basically my mom was horrified when she first saw me while picking me up for Christmas.
I visited a gastroenterologist a few days before Christmas, almost exactly a year after the symptoms first started. After a colonoscopy, I was diagnosed with UC and put on 60 mg of prednisone with a taper. I immediately started feeling better and put on 15 pounds within 2 weeks. My hair started growing back in, my fatigue went away, and I continued to gain weight. I was put on 4 pills of Lialda to control my UC and it worked well for the spring and summer of 2013.
At the beginning of my sophomore year of college I began experiencing the old symptoms of the frequent urges. Since I was still able to eat, my BMs were more substantial and oftentimes very bloody (sometimes it looked like someone had been murdered in the toilet). Mostly it was in the middle of the night and early morning so I was able to continue with my day as long as I didn’t need to be anywhere too early. However, I began losing weight again, my lowest weight down to 126. After multiple stool sample my GE diagnosed me with cdiff and prescribed antibiotics. However, the antibiotics did not work, even after switching to some hardcore ones (vancomycin I think).
Finally, after my sophomore year ended (spring 2014) I went in for another colonoscopy (so much fun). My GE found the cdiff was coming up as a false positive and put me back on 60 mg of prednisone with a taper. I no longer have bloody stool, but still have an upset stomach most days. Essentially the only times I have the dire urge now is when a bathroom is not conveniently close. My GE wants to start me on humira. After reading all the reviews online about humira I’m sort of weary to start it. Help?
Medications / Supplements:
60 mg prednisone and tapered down (winter 2012-13 and spring 2014)
4.2 g lialda (winter 2013-present)
vancomycing (for cdiff)
difficid (I can’t even remember why)
humira (about to start in fall 2014)
written by Christiana
submitted in the colitis venting area