I was just diagnosed with Ulcerative Colitis and it sucks.
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…….
Prednisone………no longer on it
Iron……….I call it the ferocious iron pills because it makes me constipated
Submitted by “Lara” in the Colitis Venting Area
Related Ulcerative Colitis Stories: