Posted 5/16/2012 10:00 PM (GMT -7)
Hi everyone! I just found this forum today as I've been googling information about different treatments. I was diagnosed a year and a half ago, and it's been an interesting ride, to say the least! :) Until this all started, I've NEVER been sick. Seriously! I even won an award in high school for perfect attendance. I never had a sick day.
Three years ago (December 2009) I was in my senior year of college and home for Christmas. I felt crummy most of the break, and the day I was supposed to fly back to school I passed out. We went to the doctor and they ran some blood tests. My white blood count was at 24, and they had no idea why. Just so you know, normal range is supposed to be between 3 and 9 or something. A really, really bad sinus infection will only get you to 15 or 16. But I didn't have anything like that! No fever, all blood tests were negative (mono, leukemia, you name it!). I just felt really crummy. They pumped me full of a ton of antibiotics, and sent me back to college. Within a month I got a cough that wouldn't go away, and got put on more antibiotics for walking pneumonia. All of these antibiotics got my white blood count to normal and rid of the pneumonia, but gave me c. diff.
Fast forward 5 months, I was graduated, had moved to a new city, and got my first job as a teacher (7th grade math), which I loved. I started having bloody stools but being the "mind over matter, suck it up" person that I am, I spent a month just ignoring it. It wasn't until I was up to over 20 bloody bowel movements a day that I broke down and went to the hospital. They assumed it was c. diff. again, so gave me more antibiotics - it took us two months of negative c. diff tests, lots of bleeding, some ER trips, and finally a colonoscopy to diagnose me with moderate/severe ulcerative colitis (this was now November 2010, and I just found out this past week that what I really have is Crohn's). I was given prednisone, along with imuran and mesalamine (asacol).
Unfortunately, I was in the process of switching insurances right after I got diagnosed (off of my parents' onto my work insurance), and I had to switch doctors. The first place assumed the second place would tell me everything, and the second place assumed I'd already been told everything; I weaned off prednisone on my own, still bleeding pretty bad because I had no idea what was going on and thought it was normal to keep bleeding. The day after Christmas I had another colonoscopy; my entire left side was inflamed and bleeding, so we started the prednisone all over again (40 mg/day until the bleeding stopped).
In the middle of it (May 2011, so 6 months of UC and prednisone), I got salmonella. This is a type of food poisoning, although I have no idea how I got it. I ended up hospitalized for 4 days.
I finally weaned off the prednisone in June 2011, but have stayed on all the other medications (imuran and asacol). For about 5 months, I was good! And then I got married in December!!!
In the end of January I started bleeding again, but it took me back up to 20 bloody bowel movements a day before I broke down. I ended up in the ER and was hospitalized for a few days. The c. diff was positive, so my husband had to wear a gown, gloves, and mask to visit me (great way to start a marriage, huh?). They let me go home, telling me it was really rare this would affect my colitis in any way and the c. diff tests were now negative. That lasted two days, and I had to go back to the ER and was hospitalized for a few more days, this time for the colitis. They said it was rare the c. diff. would affect colitis, but apparently for me it did.
I was home for only two weeks. I tried going back to work one day and was completely wiped out - I couldn't get up that day, and almost passed out three times in the first two class periods. I ended up taking sick leave for an entire month and a half (which traumatized my poor 7th graders), and went back at the beginning of April.
All of this caused me to get an abscess, so three weeks ago I went to the ER in tons of pain (I had ignored it for a week, thinking it was hemorrhoids or something until I couldn't sit down or walk at all). They cut it open, drained it, and sent me home. Three days later I was back because I got c. diff. AGAIN, so they admitted me for a few days (while my husband was in Peru for two weeks with Engineers Without Borders).
Having the abscess, they decided that I really have Crohn's instead of ulcerative colitis.
Things started getting better for only a week; I went to my primary care on Friday with a fever, lots of vaginal drainage, a sore throat, and very painful urination. Turns out the abscess turned into a fistula and I also got thrush, which is a fungal infection in your throat.
I now have a draining seton, but I am also going to start Remicade infusions next week. I am moving to Utah in 3 weeks, so we've got a lot of changes coming up. I hope they remove the seton; I hate how it feels. I have never felt so wiped out!
I would appreciate any insights or advice or thoughts! Sorry for the long post.