Introduction:
I was just diagnosed with Ulcerative Colitis and it sucks.
My Story:
Looking back I should have seen all the signs that something was just not right. However, I chalked up my unusual bowel habits to all the stress I had going on: my grandfather had died, I started graduate school, my sister had no clue that she was 7 months pregnant (she never showed) & then 2 weeks later she delivered a baby girl, & I had to move out so the baby could have my bedroom. So I tried changing my diet to help the situation. Ha! Like that worked. But, I didn’t really think about it too much.
That all changed when I thought I came down with a stomach virus — complete with nausea, vomiting, & TONS of diarrhea. I was taking over-the-counter medicine & it wasn’t helping. I went to see a doctor about my left ankle being inflamed & told him about my stomach virus. He told me to keep taking the over-the-counter medicine. Finally after a month of dealing with this I had enough. I went to an urgent care clinic on Father’s Day where I was told that they couldn’t help me. They sent me to the ER.
Imagine my shock when I found out I had lost about 45 lbs!! I’m 5’10” & being 108 lbs is terribly unhealthy. My blood pressure had dropped to something like 78 over 64. I was told I was anemic & set off a lot of alarm bells in the ER. I was sent to get a CT scan & that found that my colon was inflamed. My fever was close to 104 degrees & sleeping on 3 ice packs isn’t that fun. I had a sigmoidoscopy & my doctor told me that I had severe, severe Ulcerative Colitis. What fun! I was in the hospital for a week.
I went home & my mom helped take care of me. Then literally one week later I bolted out of bed one morning I ran to the bathroom. I was losing a LOT of blood; so much that I ended up passing out. Fortunately my mom caught me so I didn’t hit my head on anything. We called the doctor & he said for me to get to the ER. When I got there, my blood pressure was something like 68 over 52. They got me stabilized & I was then admitted for another week. I had a total of 6 blood transfusions & spent my Fourth of July preparing for my first colonoscopy. I was then told that it looked like I had Crohn’s Disease. The bleeding was so bad & I had so many ulcers that he told me it would take 20 hours to stop it all. He wanted me to start on Remicade right away. I was like, “That’s fine. I just don’t want surgery.” My primary doctor came to check on me & started to explain what my body was doing. She compared my colon to a raw chicken — when you cut it, it just oozes blood. It was an odd analogy, but it made me laugh.
I went to my follow-up appointment with my GI doctor a week later. After really reviewing my case, he determined that I really do, in fact, have UC. Great! We know what it is & we know how to treat it. I had my first Remicade dose & within a week I no longer had loose stools. Yay!! I was still going a lot to the bathroom & still saw some blood. I was really tired for about a week after & had a huge appetite. I was able to wean off the Prednisone & lost some of the water weight. I just had my second Remicade dose & now I’m going to the bathroom on average 4 times daily. It took a while, but I finally stopped seeing blood. (That could have been because of the hemorrhoids, but I don’t know)
Right now I’m on a low-residue, sugar free, lactose-intolerant diet. I never had problems with milk, but I had one doctor tell me that I wouldn’t be able to tolerate milk products well while in a flare. I also lost about half of my hair. My primary doctor told me that that was because I wasn’t absorbing vitamins well. I dream of the day when I can eat normal food again!! What is remission like? I have some good days & some bad days. Will I have no symptoms or just very few? At least I’m not ruining my panties anymore…….
Medications:
Remicade
Apriso
Prednisone………no longer on it
Potassium
Iron……….I call it the ferocious iron pills because it makes me constipated
Vitamin B-12
Multi-Vitamins
Xanax
Submitted by “Lara” in the Colitis Venting Area
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I was Just diagnosed with Ulcerative Colitis(Summer 2011). I’ve had UC for three years. I’ve got a great job, great family support, and a man who adores me. I’ve also got two cats, whom I absolutely love and cherish.