Ulcerative Colitis…more like Uncomfortably Confused.

Meet the Ragin Cajun:

I am a two decade old Ragin Cajun. I was born in Houston, Texas but I now go to school in Lafayette, Louisiana. In addition to being a full-time student I also work as a live-in nanny to 2 little girls.

Some more about me:

I am a member of Delta Delta Delta. A few of my idiosyncrasies include exercising, being sarcastic, busting out in a British accent at inappropriate times and wasting hours Facebook stalking. A few of my obsessions are Friends, Harry Potter, and eating.

Symptoms Right Now:

Diarrhea, loose stool, chronic fatigue, urgency, and abdominal cramping.

Ulcerative Colitis…more like Uncomfortably Confused.

I have had UC symptoms for 3 years of my life. It all started with blood in my stool my junior year of high school. It didn’t get really epic until my freshman year of college, the blood had continued with every one of my BMs so much so that it just became routine. I had just moved into my aunt’s house to be her full-time nanny to her 2 children, Bella and Ava. Ava was a newborn at the time and my job description soon changed from “nanny” to “second mom.” I would take care of her all day long, go to my night classes, and sneak in a nap until it became time to do the 12am, 3am, and 6am feedings. Needless to say, I was stressed. So stressed that I hadn’t noticed that my bowel movements had changed from stool mixed with blood to strictly blood. So stressed that I failed to register my daily stomach aches that forced me into the fetal position were not normal. So unbelievably stressed that my 5’1 1” 130 lb body had shrunk down to a 107 lbs over the course of one semester and the only thing I recall thinking is that my clothes were getting a little big.

The beginning of my spring semester was met with a GI appointment where the doctor sent me home with a lab sheet to get some blood drawn that afternoon but I was running late for one of my classes so I figured I could just go the next day, which I did. I went the next morning and didn’t worry. I still wasn’t worried when I got a call from the Physicians’ Assistant at the GI office. She was calling to say that my hematocrit blood level was 6.69 and they needed me to go to my nearest ER. This started the longest 2 months of my life.

I was hospitalized that night and my mother came in from Houston to stay with me. I was in that hospital for 6 days. In that time I received 3 blood transfusions, 2 fresh frozen plasma, 2 bags of iron, 2 bags of potassium, and a colonoscopy. My doctor said that the sigmoid section of my colon was so ulcerated and inflamed that he only went up 6 inches because he was afraid of perforating the lining if he went any farther. So instead of searching for a way to stop the bleeding he gave me new prescriptions and released me from the facility. My mom told me that in light of this experience and the state of my colon her and my dad thought I should go back to Houston until I had healed enough to go back to my aunt’s house. I agreed and we headed home much to my aunt’s dismay. I also withdrew from all of my courses.

I was out of the hospital for all of one week when my Houston GI sent me out for another blood test since I was not able to keep down anything. I was so ill that the 20 minute wait sitting next to the woman wearing an obscene amount of perfume brought me dry heaving to the bathroom. I looked like a drug addict, sweating, huddled in the chair, just trying not to vomit. Yet I still didn’t grasp the full gravity of the situation since I still wasn’t worried until the PA called me again to tell me I needed to go straight to the nearest ER, my levels were dangerously low again.

This new hospital stay lasted for 17 days in which I received another blood transfusion, another colonoscopy that showed that 97% of my colon was ulcerated, a PIC line to get my nutrients, started Remicade, a recommendation to get a colostomy, and a transfer to the Houston Medical District to meet with a surgeon to accomplish the removal of my damaged colon. That third hospital stay lasted 16 days where I got my 2nd batch of Remicade, got to keep my colon, and developed an addiction to the Sweet Tea at the McDonald’s in the lobby of the hospital.

That whole experience was one year ago and I still struggle with why that had to happen. I lost 37 days of my life, incurred thousands of dollars of debt, and started an infusion system that will continue for the foreseeable future. I am only 20 years old and I just get so overwhelmed. My family and friends try to be supportive but they truly can’t comprehend any of it. When I get so drained that I have to lie down for 20 minutes I know they’re just thinking “Why cant you just suck it up?” Or when my joints are so swollen I can’t walk up the stairs to my class and I wait for the elevator I look at the kid in the wheelchair next to me and think to myself “what the hell is wrong with me, I am not as incapacitated as that guy and I can’t even walk up the stairs”

In the middle of one of the worst cramping extravaganzas when I decided to Google “I have UC” and magically found this site. I started reading and realized, I’m not a freak. There are others suffering from not only the disease but the side effects of the shit that is supposed to make us all better.

For those of yall who have had this disease for a while:

• Does any of this get any easier?
• Do the Remicade treatments get easier to fit into your schedule?
• Do the treatments get easier on your body as the time goes?  Cause to be perfectly honest I am tired of having cankles and knees the size of my hips.

Medications I’ve Dabbled In:

urrently I am on:
Remicade (every 6 weeks)
Azathioprine (Imuran)
Lialda

In the past I have taken:
Prednisone (I hated all the side effects with this steroid)

written by Chelsea

submitted in the colitis venting area